The Firecrotch Fairy Diary - The Next Chapter

The Firecrotch Fairy Diary The Next Chapter

Dolores Runte

The Firecrotch Fairy Diary

The Firecrotch Fairy Diary: The Next Chapter Copyright Š 2018 by Dolores Runte Acknowledgment I would like to thank all of my "Fairies" for helping and supporting me while writing this book. We WILL be heard!

All rights reserved. No part of this book may be reproduced in any form or by any electronic or mechanical means including storage and retrieval systems without permission in writing from Dolores Runte

Powered By Bookemon. www.bookemon.com

The Firecrotch Fairy Diary The Next Chapter Dolores Runte

In Memory Of Lisa Benshabat June 13,1988 - Feb 9, 2016

Gail Benshabat: In honor of Lisa It took me many months to write this. I knew it would be hard, but not this hard. I tragically lost my 27 year old daughter on February 9th, 2016. The pain, as many might imagine, is unlike anything I have ever had to describe in words. The shock of losing a child, sister, granddaughter, niece and friend is incomprehensible. The pain is paralyzing. I am the mother of Lisa Benshabat. My family lost her to a monster of an illness that was bigger than we could ever imagine. She was not only battling a physical condition (Interstitial Cystitis, otherwise known as Painful Bladder Syndrome); she was also fighting with anxiety and depression for most of her teens and twenties.

The best years of Lisa’s life were growing up in Vancouver (1992-1998). She was 4 years old when she attended her first pre-school in Richmond, B.C. I can still see her big smile when she was greeted each morning by two kind teachers. The following year she joined her sister at Vancouver Talmud Torah, where she spent the next 5 glorious years forming close

ties with her classmates. She was a very happy child and loved life, her sister and amazing grandparents. Trips to the island were always exciting and family (on my mother’s side) always left with happy memories. Leaving B.C. marked a sad turning point in our life. As much as we wanted to stay, Toronto offered more in terms of a future, work-wise.

Despite everything that Lisa went through in life, I was always amazed by her innate sense of positivity. She was a trooper, often following in her big sister’s footsteps and creating fun out of the smallest of things. Some of those things are so touching because it showed the real essence of Lisa. I can’t help but share a good example of this. We lived in Israel for a short 6 months and I’ll never forget the time when Sherry (Lisa’s sister) and Lisa were alone in our tiny little apartment while my husband and I went for a parent-teacher interview down the street. While we were gone, they invited a good half a dozen stray dogs from the streets of Kiriat Tivon (outside of Tivon) into our apartment for treats! Lisa thought that they looked too skinny and needed to be fed! Her heart was definitely in the right place. Being close in age, they always found ways to create a little honest mischief. Lisa had that little twinkle in her eyes and mischievous give away

laugh. Her love of animals was quite evident from a very young age; she was most definitely in sync with their souls.

Sadly, Lisa developed a very debilitating health condition called Interstitial Cystitis (painful bladder syndrome) at the age of 10. It crept into her life and never really left her at peace. For a good part of her middle to high school years, she was relatively fine but not entirely. By her late teens, the pain and discomfort of this debilitating disease showed its ugly face again. Doctors and specialists found it a challenge to diagnose, let alone treat.

Together, we were adamant to find some kind of relief from the pain. I sought out specialists, naturopaths, and physiotherapists. I connected with I.C. support networks. The support networks were our life saviors. They offered advice and moral support. Despite all the ups and downs, Lisa was a fighter. She came up strong and fighting after everything she went through. We went to countless medical appointments, each time anxiously waiting for answers to questions that didn’t always provide the answers we were looking for. One thing this did for us; it brought our small family closer together emotionally.

Lisa had studied at George Brown College and had finished all of her courses and a practicum. She wanted to work with young children or adults. Her love of music, playing guitar and drawing complimented this career choice. She was clearly gifted, even though she didn’t always see that in herself. Unfortunately, the I.C. robbed her of a life that she so wanted to experience. Although there were many good days and her pain was actually getting better in last 2015, she was worn out. She was fearful of what the future would bring or not bring. As her mom, I gave her a lot of hope. Her sister gave her an enormous amount of encouragement and she was recognizing that changes can happen.

She had courage. Not only did she have the courage to face her own inner turmoil and pain, she was incredibly gifted at recognizing the pain of others in the face of everything happening in her own world. Lisa never just looked at her own problems. She looked at the whole picture, every one’s life. Her ability to see a problem and face it with strength and perseverance was remarkable. If I had to describe Lisa in a few words I’d say she was pure, honest and loving. She could find laughter in almost anything. Right up to the last day I was with her. She lay with me on my bed

and asked me (giggling) “Mom, sing the song

by Miley Cyrus, “Wrecking Ball” and laughingly I tried several attempts until we were in hysterics. She made me laugh and that’s just one of thousands of beautiful memories I’ll always have of her. Lisa could feel the pain in others. When her father was battling cancer, she knew exactly what needed to be done, tending to him, monitoring his medications, tube feedings and pain management. In the face of adversity, she was calm and focused.

Her empathetic and giving nature was embedded in all that she did and we are all forever grateful that we were on the receiving end of that special love.

Her Saba (grandfather) and Safta (grandmother) were her life. They were her second parents. They raised her along with us and wherever they moved, we would follow!

There was a very close bond between them.

Sherry and Lisa were their life. They were Lisa’s guiding lights. She would turn to them for advice, talking to them for hours on the phone about life. They provided us with food, shelter and love. She so deeply valued her relationship with them.

Her sister, Sherry, hardly two years older than her was always her “big sister.” They had an inseparable bond. Sherry would fight tooth

and nail to do whatever she could to make life just a little more tolerable for her. She would live for those moments when they’d dance around in my kitchen or roll over laughing about something silly our cats were doing. Those moments were Lisa. Outside the pain and suffering, those moments filled with laughter and smiling were Lisa. That contagious smile of hers could light up a room. Those moments were the Lisa we knew and still hold in our heart. She was Sherry’s biggest advocate. She believed in her so much and made her feel so much bigger than she could ever credit herself for being. They really built each other up; Lisa motiving Sherry to complete her teaching certificate in 2014 and Sherry motivating Lisa to recognize her genuine beauty inside and out.

If words could wrap around Lisa and say what we all want to say, they would spell endless love. That is what we all have for her. If you knew Lisa, you knew that she had ambitions that were full of love; she always wanted to help people. She wanted a loving husband, and have a beautiful family. It was her dream to have babies when her sister was having babies and share the joys of those special times. She so badly yearned for a future where she could share her heart. She had the sweetest, kindest and most loving soul. I know

that she would hope to see the people in her life move forward by adding just a little more sweetness, kindness and love in their lives. I truly believe Lisa is not gone. She is with us. It may sound strange, but I feel her presence often.

In Lisa’s exact words: “Please hug more, give more, laugh more and never hold back from saying I love you to those around you.” I know that this is the message she would want you to hold and pass on to your loved ones.

I urge all of you reading this right now to do the same. Please don’t be afraid to talk to one another, to actually “talk” to one another. Some of you are hurting because you’ve lost someone who meant the world to you. Words are not enough. I’ve written what I wanted to say, but I would like more people to come forward and reach out to one another from time to time. If you see someone is hurting inside, don’t be afraid to speak up and let them into your heart. A warm hello, a smile, a touch on the hand, a hug is all that is needed. I can assure you that you will be helping this world be a better place and making a difference.

National Suicide Prevention Lifeline 1-800-273-8255

" My bladder spasms , sometimes so much that it feels like I am in labor and I don't even have a uterus. My bladder feels as if it's " making a fist", balling up so hard that it feels like a boulder, heavy and hard. As my bladder spasms, it feels like my urethra is being pulled inward, deep inside my bladder. My outer labia burn, as if on fire. The only time I get relief is when I have surgery. The inside of my bladder is burned / cauterized to stop the lesions from bleeding. Then my bladder is overfilled with liquid to stretch my bladder with the hopes of enlarging it for temporary pain relief. If I'm lucky, my bladder won't perforate, for if it does I could wake up without a bladder. If I'm lucky, I will get up to six months of an almost pain free life. Then, it's starts all over again. Another spasm, another surgery. I have Interstitial Cystitis. There is no known cause, and there is no known cure."

Authors Note I wish I could have written just one book and it would all be over. It's just not that simple. If there were a cure I wouldn't be writing this today.

We have lost two more IC Sisters since Allison's passing. No matter how much we try to describe our pain, we just aren't taken seriously. There is no cure for IC. We may go into remission, but it will never be gone.

Interstitial Cystitis is compared to stage four cancer on the pain scale. Imagine dealing with that pain on a daily basis. Imagine dealing with that pain and you have no choice but to work because you are denied disability, just because you appear to be fine. How can we have hope when there isn't any?

When we complain about our pain to family members they say, " But you had surgery.

Aren't you better?" It makes me want to scream when people say that to me. There is no surgery that can cure or fix an IC bladder.

Some have even opted for bladder removal surgery as a last attempt to get rid of the excruciating pain, only to realize the body experiences phantom pains after .

If you have a loved one that is suffering from IC, please listen to them . Educate yourself on what this illness really is. It's not a UTI. It's not something that can be fixed by taking antibiotics. It's a life altering illness that takes our lives away.

"New research supports that interstitial cystitis (IC) is much more prevalent than originally thought. The total and the proportion of men with IC is much higher than originally estimated.

Women: 3 to 8 million women in the United States may have IC. That is about 3 to 6% of all women in the US. Men: 1 to 4 million men have IC as well, however, this number is likely lower than the true rate because IC in men may often be mistaken for another disorder, such as chronic prostatitis/chronic pelvic pain syndrome.

Children: Many adults comment that their IC symptoms started in childhood. Pediatricians also diagnose children with this chronic condition. But, epidemiology studies have not yet been done to estimate the true prevalence of children with IC."

ICHelp.org

Present Day May 22, 2018 I'm sitting in my trusty recliner, MinMin on my lap. I'm in pain. Horrible pain. It feels like my urethra is swollen. It burns. I've been having these symptoms for about 4 weeks now. As I stated in my first book, I have started a new anti-depressant that I thought may be the cause of my pain. Last night a lightbulb went off in my head. I started doing planks the same week that I started the anti- depressants. I've been planking like crazy! It's turned into a mind control thing now. #howlongcaniplank This brings me back to my theory that my pain has something to do with my pelvic floor. I no longer have a uterus, so I know it's not that.

The pain definitely feels like it's near or above my urethra. The pain is consistent, but yet it changes. Sometimes it's a burning sensation, sometimes it's throbbing pain, and sometimes it feels like little jolts of electricity. I try to stay away from the doctors as much as possible, they can't "fix" me, but they can still take my money. I can't take this pain anymore. I'm going to have to see my Urologist.

I called my Urologist today to make an appointment. Good thing I did because the secretary said I already had an appointment for the next week and that I needed to have my labs done a week prior. She said if I had missed my appointment it would have been months before they could fit me in. I gave my blood and urine sample today. I hope they find something in my culture because if they don't I fear it may be my Pudendal nerve.

The twinges of pain that I have start at the top of my vagina, around the clitoris and shoot all the way along the vaginal wall to my bottom.

This is the same " route" the Pudendal nerve follows. We talked about this when I did my pelvic floor therapy. My therapist said my pelvic floor muscles were very tight and my hips were a bit off.

I often find my mind wandering, which brings me back to thinking all of this is related somehow to my childhood. I've had vaginal issues my whole life. If I were molested at a young age it would explain the nerve damage .

It would also explain why the pain came so suddenly after the drunk night of sex my husband and I had .I need to tell my doctor what we did . #handsovereyes

I'm going to have to come clean and tell someone. I don't know why I feel so ashamed , but I do. " Deep breath and get your big girl panties on!" Ok, I'm going to tell the doctor next week and make him do whatever testing needs to be done in order to rule out pudenal nerve damage. #ughhh

Pudendal Neuralgia "The pudendal nerves arise from fibers of the sacral nerve roots in the lower back beneath the sacrum or "tailbone". These nerves course through the muscles and ligaments of the pelvic floor and buttocks. They are responsible for sensation and muscle function in the pelvic floor, vulva and clitoris, rectum, base of the bladder, and the lower outer third of the vagina. In males the pudendal nerves also innervate the perineum and portions of the scrotum and penis. They relay pain messages to the spinal cord and to the brain. Pudendal nerve pain (neuralgia) may occur when the nerve is injured, inflamed, compressed, restricted, or "trapped".

This can be caused by inappropriate pelvic floor muscle spasms, recurrent microtrauma from certain repetitive flexion exercises, or tendinous or bony abnormalities around the course of the pudendal nerve. (Biker's Syndrome in long distance bikers is a common example of pudendal neuralgia. Over time, the nerve malfunctions, developing abnormal fibers and producing local chemicals, which send pain signals described as burning, stinging, itching, crushing, aching, or numbness, to the level of the brain. Neuropathy, a more complicated nerve disorder, may also develop with chronic cases. In cases of pudendal neuralgia the vulvar, penile or perineal and perirectal tissue may either appear only mildly abnormal or completely normal.

Treatment A pudendal nerve block injection is a procedure by which medications that inhibit pain and inflammation are injected into a space around a nerve, thereby preventing pain messages that travel along the nerve pathway from reaching the brain.

Pudendal nerve blocks are most frequently used to provide anesthesia for pain releif in patients with chronic vulvar pain and/or itching that does not respond to topical or oral medications. It may be diagnostic, in that if the pain is temporarily relieved, then the pudendal nerve is held responsible for that pain. Usually a series of pudendal nerve block injections, combined with pelvic floor muscle physical therapy, is used to treat the persistent pudendal nerve pain. We have been successfully lowering the levels of pain in both women and now men with this approach for a number of years in our pelvic pain program.

The easiest approach to the pudendal nerve is outside the vaginal opening, or just beneath the scrotum near the "sit bones" that are landmarks easily felt by an experienced pelvic specialist. These blocks are not only effective in lowering the sensitivity of the nerves but are extremely safe and in the past were used routinely in childbirth to numb the "saddle area" just before delivering the newborn.

If the pudendal nerve is the causative structure producing vulvar pain then the block will be quite effective and provide immediate relief.

At a minimum there will be partial relief, depending on what percentage of pain is produced by the tissues innervated by the pudendal nerve or damage to the nerve itself.

Pain relief can vary dramatically from person to person. In some advanced cases, in which the pain has become neuropathic, pain may increase briefly following the procedure before more lasting improvement is seen. More "permanent" attempts to correct a small but difficult subset of these patients may include referral for "pudendal release surgery". Only a small number of surgeons are trained in the US to do such surgery and Dr. Echenberg with his networking in pelvic pain organizations and resources has a working relationship with selected physicians if needed (both for pudendal neuralgia and other peripheral neuralgias)."

* Information provided by The Echenberg Institute for pelvic & sexual pain #checkthemout

Has Anyone Had A Pudendal Nerve Block?

"I've had temporary blocks with all of my pelvic floor botox injections. Heaven to be numb for a little while!! Interesting to hear about the adrenals though..."

"I've had a hypogastric nerve block done a few times and it was helpful for bladder pain. Is that the same thing? Do you think that can cause the adrenals to fail? All this stuff sounds so scary I don't know if I want to go back to try and any of it ." " I’ve had hypo gastric and pudendal and was getting them every month to two months and The Mayo Clinic said that the high doses of steroids if done too often can cause steroid induced Adrenal Insufficiency, which is what I have."

"Yes and now I have a pudendal nerve stimulator!!! It’s done wonders for my IC symptoms."

They do the nerve block as a test before doing anything permanent to the pudendal nerve. All of the nerve blocks I had before then actually hurt me more than help. That one made my pain go away, so that’s why I went ahead with the pudendal nerve stimulator. My doctor is wonderful and sees people from all over the country. There are only a few doing pudendal nerve stimulators now, still “experimental” technically. But he doesn’t have to do pudendal surgery anymore on his patients because of this. I was just telling someone else about him this morning!! Can’t say enough good things ." http://www.gynpain.com "I had one done before and it only lasted about a month but that was the first time I got total relief from my ic pain. I would definitely recommend it for relief. I had it done during my last cystoscope/hydrodistention." "yes i tried them for awhile but became more painful than it was worth" "I had a shot in my back .Is this the same? I did it for pain. It lasted about 6 years."

" I had one done earlier this month to hopefully help my PGAD, unfortunately other than flaring it for a couple of days ,it did nothing. On the other hand the Botox in the piriformis and sciatic nerve block I had done in the fall gave me about 3-4 months relief from the pelvic pain which in turn decreased the IC pain I believe."

May 23,2018 Now we all know that I try to stick to the whole natural thing, but sometimes you gotta bring out the " big guns". I have cabinets full of natural supplements. I have so many that some of them end up expiring before I use them. I also have a "script" drawer. Luckily I have really good health insurance, so if a doctor offers a prescription that may help me I take it.

Last night I couldn't take the throbbing pain that was coming from what feels like my clitoris. I have a script for Doxepin. Was prescribed to me for Vulvodynia . Vulvodynia is a word used when the doctor cannot determine the cause of vaginal pain. Did you know that?

From what I've read Doxepin is a script used for nerve pain. I took it before bed because I didn't know what reaction I would have to it.

This morning I woke up very groggy. This grogginess lasted all day. My burning throbbing pain was down to about a 4/5 on the pain scale. This was pretty good considering I Was at a 10 the day before. Around 3 PM the pain started to return. My daughter is graduating from CNA class tonight so I couldn't really take anything.

There's nothing more uncomfortable for an IC'er than having to sit on hard bleachers. I missed almost all of the football games this year because of IC. Last year I used to bring a bean bag to sit on. I'm sure people thought I was strange, but I was much more comfortable than they were. Tonight I had no bean bag. I could feel the throbbing from my urethral area.

Sometimes it feels very strange . If I were to describe it it's like my urethra were a pair of socks. You know how you fold the socks from the top and fold it over to keep them together?

That's exactly how my urethra feels at this very moment.

Like someone is pulling on it and folding it over. The most horrible feeling ever. I am also very bloated. The dreaded IC belly has returned.

May 25, 2018 My vagina feels like it's being dehydrated.

It's the end of the school year which means a lot of year end functions, which also means a lot of sitting. Uncomfortable sitting. My daughter Hannah is graduating from high school. I am an emotional mess right now. The bond her and I have is beautiful. She trusts me completely knowing she can tell me anything .

Just this week she graduated from CNA class and next week, high school. Although I am very proud of her, my insides are a nervous wreck.

She will be going away to college. AWAY! Away from ME. Like I've said before, I'm a stressor . Now I have new worries. Worries of fear for her new endeavor. We drove to every single college she was interested in.

We even flew out of state. Driving. Ughhhh.

Driving hurts. Sitting in the car for hours on end, shifting positions so our privates aren't uncomfortable. Ok, I'm rambling! Anyway, all of this year end stuff is taking a toll on me. My routine is interrupted and I have to sit on very uncomfortable bleachers. I HATE BLEACHERS! Five more days until I go to my one year post - op appointment. I'm afraid to be honest with my doctor. Do I dare tell him I quit taking my Elmiron? What if I tell him and he says he can't treat me if I don't follow his orders? What if he releases me as his patient like the other Urologist did? Do I tell him about all my concoctions and natural remedies? I'm pretty sure my Hunners lesions are back. Maybe it's just stress, but I am very familiar with this burning sensation.

I've incorporated slippery elm powder back into my cup of coffee. Yes, I know , I'm not supposed to drink coffee but IC has already taken so much away from me. It's NOT taking my coffee!

The pain I'm experiencing right now is a 10.

I think I'm going to get a culture to check for yeast. It seems every time I'm in this much pain I test positive for yeast. You all know how I think this is all yeast related. We'll see!

"The symptoms of interstitial cystitis may well be connected to the overgrowth of Candida. ... Infact, such individuals go on to show severe manifestation of the interstitial cystitis symptoms. These all point to the yeast Candida being the culprit and not bacteria.The connection between interstitial and candida albicans as a contributing factor to this condition makes perfect sense. Before a woman is diagnosed with interstitial cystitis they are diagnosed with multiple individual episodes of UTIs which are treated with multiple courses of antibiotics. Every time we take antibiotics we put are internal balance at risk, as antibiotics kill both the good and bad bacteria in our body and consequently allow the candida to flourish unchecked and cause multiple symptoms. If you are suffering from interstitial cystitis and traditional treatment has been unsuccessful than the exploration of candidiasis and the Candida treatment may help you gain new awareness of your condition."

*Linkeden

What Has IC Taken From You? "A normal sex life."

"My life. Time with my kids. It breaks my heart. I sit and cry about it all the time. My youngest is Autistic. All 3 have been so awesome about it even though I know I have disappointed them. I will be totally honest, I don't know how much more I can take."

"Sex, relationships, piece of mind, sleep, healthy water intake, faith in doctors, freedom of traveling as I please..."

"Sex completely. Let down my children so often because of wanting to do things my body just wouldn't allow me to do. Having to leave a theme park to go to the ER to control the pain because my children wanted to go on rides with me. I loved rides before IC. Any form of alcohol. Almost lost a job and was threatened that if I were to miss one more day I would be walked to my care and forced to leave the premises. My union did not stick up for me.

This after 10 years of service. Took away far too many foods to mention. I could go on forever."

" IC has taken ME. I am no longer the woman I used to be. I live in a recliner. I avoid any and all activities that require leaving the house, even missing my children's school functions. I am no longer the woman my husband married.

Instead I am a woman who doesn't want to be touched, much less have sex. " "That and I can't do things with my daughter like I used to. It took away my gosh damn life."

"A normal life."

"A future, at least the one I had imagined.

Friends, a social life, sex life, faith in the medical community. Career. A better question would be what doesn’t it take?"

"Sleep, sex, friendships, freedom to travel and enjoys the outdoors, career advancement, peace of mind, overall calm lifestyle with normal worries."

"Youth and sex!"

"Everything that has been listed above!!!!!"

"My sense of comfortably, normal life, sex, and lately the ability to have another baby."

"IC has taken away more of my energy which has already been exhausted from an existing autoimmune disease. Mostly, it's taken away my ability to wear my normal clothing (can only wear loose yoga pants and big shirts) and my ability to function at all during a flare."

"Sex, time with my daughters, clean house, broken promises, time with my husband, too many medications, too many dr appointments, everything."

"An easier to answer question would be what did ic not take from me..."

"It has taken away my ability to jump in a car and go on adventures and changed everything about my life. Now I must plan, pray and hope I get thru vacations without flaring. Taking away simple pleasures of life everyone around us are enjoying like coffee, exercising, drinking alcohol and chocolate etc. I don’t even consider getting a job cuz who wants someone not reliable."

"Leaving my house without fear of flare."

"Sex, traveling, cocktails, career, energy, and piece of mind....I thank God that in my younger years I was able to at least have a healthy sex life! What hasn't' it taken from all of us??"

"Sex, I'm angry a lot more which sucks. I don't play with my son like I used to."

"Sex, coffee, Jean's, cute panties, food, long trips, vitamins, sleep.."

"Freedom. Sex with my husband of 34 years."

"A social life - drinks with friends and fabulous restaurants......."

"Exercise, sex, alcohol, chocolate, running with my kids, to be pain free."

"My job , marriage, friends, family , savings."

"Friends, family and my faith in doctors." " Intimacy with my husband. Sex hurts. Sex makes me bleed. The pain that comes after sex is even worse! "

"Life as I once knew it. Although I have had IC since I was a child , I learned to live with no fake sugars, my periods, foods, and even taught myself through a prayer. Needless to say I self taught myself all of this without having a diagnoses until I was 47 yrs old. It reared it's ugly head and took over my life. I have had to relearn to shop, socialize, travel, have sex, eat, sleep, be happy. The biggest thing it has taken away from me being able to enjoy my family and do for others. It has added me being a hermit, me saying no a lot, me being able to jump in my car and go any where, work, independence. It has made me reevaluate my entire life. I have to learn to make myself be happy when that always came natural for me. I have had to learn to do what I can on my good days and nothing on my bad. Heaven knows I miss my old me, my old life."

"My life the way it used to be:( it stole so much from me."

"I cry at least 5 times a day just because I feel like I am cheating my kids out on life." "everything..I've has severe IC for 25 years."

"There are so many things, but the most agony is not wanting to do things (or sometimes even not being able to do things) with my kids like I used to be able to do. I’m so tired of telling them “I’m sorry mommy can’t right now, because mommy doesn’t feel good.”

"Mine has kept me from being able to work. I’m stuck in my apartment 24/7. Pretty sure my boyfriend of 2 years is done dealing with my sick ass. And the barely any sex doesn’t help.

I’m on so many medications they have caused other illnesses for me. And I recently have been going through a bunch of surgeries on the bladder. It’s has truly ruined the life I knew. I cry myself to sleep most nights, but others I don’t sleep at all."

"Sex. Marriage. Ability to go and do whatever I want. Finances. My job."

"I can’t make plans anymore. And outdoor concerts, sporting events etc are pretty much out of the question because of how often I have to go to the restroom."

"Freedom, peace of mind, spontaneity, energy, stamina, happiness, ease, food, social life...its hard trying to manage this disease and have any kind of life."

"Sex, traveling, eating normal foods, socializing. Like probably most of you, I have other conditions that complicate life even more."

"No more traveling. I used to travel with my friends every year. Always going on cruises and other fun things. I have lost my peace of mind of being able to go anywhere without worrying where the bathroom is. Worrying what if I have to pee and I can't get to a bathroom quickly. Sex, coffee, any food I want."

"It has taken away my energy! My social life is affected,I have none. It makes me sad that there is no cure yet. I wonder what will happen as I age. I can't just go out and enjoy myself. I have to worry about a bathroom,what I will eat or drink. Sometimes I feel like this disease has taken over my body."

"I think the question is what hasnt it taken from us... Its like learning to walk again. Super hard... u fall down..u get back up and try again."

"Some falls hurt worse than others, but if we dont try there is no hope for the next IC sister or brother ,and to me its way more important to fight 4 the cure."

"Sexual intercourse. Yellow chilli peppers."

"It's taken everything from me.Some days I can't even get out of bed. It took my job,my financial stability ,and has driven us to the poor house."

"Can’t plan things.... can’t sit long!!!"

"Friends - not one friend I had when I was diagnosed still speaks to me. No sex life, but with being single that isn’t an issue . It stops me from being the active fun Mum I want to be . My independence . I have to rely on family so much for support."

"it’s given me knowledge of the importance of putting healing foods in your body, learning about acidity in the body, and finding other people who understand. being able to share info and support to help others. Finding new types of recipes to make. Trying to not focus on too many negative things in hopes that a more positive mindset can help with continuing to heal the mind and body. But, since the question is what’s been taken away, it has taken away many things, such as intercourse with my partner or being able to sit down in a meeting at work and not move around and get up constantly. Makes me feel like i'm not paying attention and am unprofessional when it just hurts a lot with back problems and pelvic pain to sit in a chair. Then things fall asleep more and burn more so you stand from your seat in the back but people look at you. Seems silly , but I always dread meetings and trainings because of this. Then the aftermath of the sitting when you try to sit longer comes roaring back and pelvic muscles are super tight and painful. The pain has gotten me into yoga over the years, which i see as a positive thing." " I have no social life because of IC. I live the life of an 80 year old Woman. "

"Between the IC and other associated conditions, I had to finally give up my full time job, which I worked at for years and struggled to keep. Years ago it was harder to get LTD. I just gave up!!"

"Sex, foods, joy of handing with my kid when things get bad...it has brought me lots of tears."

"Sex with my husband!!!"

"It's taken away my confidence , it's changed everything , every aspect of my being . Nothing is ever the same ."

"After 45 years my list would be so long and still going."

"Im sitting here now medicating myself just to drive to my best friends daughter's graduation party. No narcotics....Torodal, Prelief, Uribel, Pyridium. However I got the good stuff when needed. I hate this!!!!"

"A lot of freedom." " because of IC, I fear leaving the house. I have become this lost isolated being"

"Good sex with my husband, being able to travel long distances, being able to stand or sit for long periods of time, even though it's taken so much I rebuke it in the name of Jesus and I refuse to bow down to this disease. I declare that I will overcome this by the blood of the Lamb!"

"My husband understands my pelvic pain. But it still isn't right that this disease has taken away our intimate times together. IC has taken away joy out of life."

Let's Talk About Sex I know this is a sensitive subject, but it has to be brought up. I am writing this chapter for our spouses. Plain and simple, sex hurts! It's not that we don't want to be intimate with you, it's our fear of the pain it will cause that keeps us away. Honestly since having IC there hasn't been one single time that sex hasn't hurt.

Here's a little anatomy lesson for you. Learn where the lady parts are PLEASE!

The urethral and clitoris are so close to each other. If you happen to grab or squeeze our urethra it sends horrible " shocks" of pain deep inside . Our outer labia pretty much burn as if on fire 24/7. Our bladder is also right on top of our vaginal wall, so rough sex just isn't an option as it feels as though you are stabbing us. Foreplay is also a key component for sex.

Without foreplay our body will not produce the proper lubrication which will make sex easier.

We pretty much need to be treated like a delicate flower. As I'm sitting here writing this, I'm in horrible pain just from sitting in a chair. If I'm in this pain from sitting, imagine how bad it hurts to have something thrusts into you over and over again. We didn't get this illness on purpose just to get out of sex. We didn't choose this. Please do not punish your loved one because she can't be intimate. Did you get that key word, CANT? I love my husband with all of my heart and I have the same fear that every other woman in this book has. If we CANT be intimate he will find someone else. So please, study the diagram and learn about the lady parts that way you can do your part in making sure sex is as least painful for HER as you can. Sex has to be about her now. This is your spouse who is in pain all day long and now she has to fear sex

and fear losing you.

"I’m ok during, but afterwards I get sharp shooting pain inside and it can come and go for a day or two."

"My bladder and pelvic floor goes into spasms and can stay that way for weeks to months!!!

Sharp pain, aching pain, burning pain, during and after. Even getting aroused hurts. It's the weirdest thing ever. But I have pelvic floor and endo issues so maybe those are the icing on the cake."

"My pelvic floor feels like I just gave birth after sex. And I'm talking a birth that took 2 hours pushing, no epidural, huge episiotimy birth. Not worth it to me." "burning pain, hoping that your insides fall out eventually so they don’t hurt anymore. hurting so much you aren intimate anymore and worry your partner will leave you bc of it. feeling like you are being sexually assaulted bc of the pain and how it feels bad, your body tensing up as if it is an assault even though you just want to be normal with your partner."

" My husband and I have not had sex for over 4 years. He is very moody about it but won't come right out and say it unless we are in an argument about our relationship then he always brings that up, like I'm just not physically doing stuff because I'm being cruel to him. He knows better, but he will get that jab in a few times a year. So I know it bothers him. But he does get it, because back when we had sex I'd cry and even get to the point of pushing him off me. He didn't want to hurt me so then he'd feel bad. I'd feel bad, vicious cycle. But deep down I feel like I'm not fulfilling my duty as a wife and deep down I think he feels that way too. My urogynocologist (a guy) even came out and told me if I can't figure it out I'm going to be dealing with more than physical pain, I'll be dealing with divorce. He said men want sex. Period. It's an expectation. So my urogynocologist is on a mission to getting me feeling good enough to have sex. Well guess what.....I'm still in a ton of pain and PT, a hysterectomy, endo removal, bladder installations, pelvic floor injections, vaginal valium, etc, etc aren't doing the trick. At this point I'm really worried about the possibility of divorce. But I guess if he wants to go that route his true colors will show. But ladies, if it hurts, you don't have to do it. Period.

End of story. Gone are the days where you're expected to do it even if you don't want to. No one knows your body better than you."

"I'm divorced, he found someone who could."

"Besides just the physical aspect, I feel so guilty and hurt sometimes that I cant just go at the drop of a hat, when I love my man so much, and hes understanding, but I know it hurts his feelings."

"Sex is almost off limits; but I try anyways. It stresses me out. In the beginning I would take it till you make it and then cry with burning pain and a warm wet towel between my legs. Used every type of lube out there. My husband is super understanding, but frustrated. Had my hormones checked and found a estrogen cream that is also helping. Having IC has ruined my life, but I will not let it win. I do what I need to be my normal. IC is an awful disease."

"My partner also has a chronic illness so he is 100% supportive when I'm hurting too bad to have sex. There are times when he is hurting too bad when I want to. My suggestion is find someone who understands. I just ended a 17 year relationship a year ago. He didn't

understand what it's like being sick all the time.

Nor will anyone who is healthy."

"Charlie horse pain that’s deep deep inside and last for days on end after along with the LRQ pain I have makes me feel like I’m wearing a girdle that’s 100 times too small with barb wire from the spasms the next few days!"

"It has ruined my life too. My husband is so understanding but, I feel like he’s not going to wait forever. " "It's been very hard to find a partner to understand this illness. Most of the time I'm not in the mood. I think this illness preoccupies so much of my time trying to heal and manage symptoms that it kills my mood. Having sex changed as I need tons of lube, and must take IC meds and Aleve before and after. Also it's hard to relax and really enjoy it ."

"I can’t move after, I have to take something for pain. My bladder won’t stop spasming, it burns when I pee, I leak on myself and that pain can last anywhere from a few hours to 4-5 days.. all I can think about is the pain, and how sometimes maybe he’d be better off with someone else...it has definitely put hardship on

my marriage. He says he will be monogamous but not celibate.. if that makes any sense."

"It’s so physically and mentally stressful to even try to have sex. Besides the anxiety before hand of the pain, but the pain after is absolutely horrible. Then I get to here my boyfriend blame himself and see him feeling guilty for hurting me, even though it isn’t his fault at all. Plus, most of the time I’m never in the mood or even want to be touched I’m in so much pain constantly. I’m terrified for the day he leaves because he won’t be able to deal with my bullshit anymore."

"Same!!!!! I do have a really understanding boyfriend. I would be perfectly fine not having sex anymore for the rest of my life due to the fact of the aftermath it causes my body and mental state."

"I have to prepare for sex. It is never a spontaneous moment. I do a cocktail instill, cbd oil on my utethra last but not least acouple of puffs of my wink vape. I have found during sex that there is a position where I can control the pounding of my bladder. No foreplay except for kissing and small petting.stay away from the zone down there. Afterward my

bladder spasms for days and uti symptoms are worse. It is a dreaded task but unfortunately I don't have the husband who has a long tolerance for no sex...although he is precious and supports my IC and me in many ways. I miss sex as it once was...I miss enjoying it. IC controls every aspect of your life."

"I just had my 30 year anniversary with my husband. I can’t believe he has stayed with me for 30 years. The first thing I want to say is I was fortunate to find my soul mate and best friend who really loves me. The first 10 years were amazing we had a great sex life. After my 2nd child the pain started before and during every period. They misdiagnosed me and I had s hysterectomy. 5 years later I was diagnosed with IC. I also needed a ton of lube .

Sometimes the tears would run down my face during sex but i would turn my head away.

Orgasms felt great but afterwards the spasms started and the pain would last for days. This went on for years. I finally told him how much pain I was in during and after sex and he felt guilty. Our frequency of having sex lessened and I felt like s terrible wife. I used to tell him to go get a girlfriend that I didn’t care. He just stared at me. When you love someone so much you just want them to be happy but deep inside

it would have killed me if he acted on my suggestions. Today I take Valium before and use my vape pen before sex. We have a routine and find different ways to make each other happy. I’m trying to stop complaining of how bad I feel every day because nobody wants to hear it. I’ve learned to live with IC the best I can and take one day at a time."

"Since I had a hysterectomy, and I had my hormone levels checked I was put on a testosterone cream for low-t, I very rarely have pain WITH intercourse. However, after I have bladder spasms, increased frequency for hours, and my constant pelvic pain gets worse. My pelvic pain feels like period cramps. I wish the post sex pain would go away. I always had pain and dryness with sex for as long as I can remember so sex itself is enjoyable for the first time in my life. The post pain just makes it hardly worth doing though."

"I used to really enjoy sex. I was an every day girl. Now the things I need to do just to even think about it ruin it all. Too much pain.

Especially after. I feel robbed of a great part of my life."

"I write this as I just finished applying some “miracle cream” to my most intimate areas in hopes that maybe we can have a normal sexy time tonight. Dr recently prescribed some concoction to try to help with the burning and other things that afflict the lady parts. It’s more than 12 hours away, but I’m prepping now. I’ve dealt with this disease now for 18 years, it’s destroyed my self esteem, my body image, my sense of control, and my marriage 2x. We are still married, in spite of it.

It seems like opposites attract, and that seems true even for sex. First it was endo, then infertility, then a hysterectomy to help the endo, which it didn’t, then the dx of IC. Then hashimotos which wipes me out, then a car accident and a broken ankle, then another broken ankle recently, but to use Elton John, I’m still standing. My husband tries, but there have been many times he has threatened to leave, he’s cheated on me virtually several times and also with my best friend, who in her misguided attempts to help, also tried with me (not successful, I don’t like women in that way), and it still hurt either way. He and I have tried antidepressants, therapy and other things, and he’s trying to be supportive, but it’s sucks! He’s a sex addict and I just want to be a normal woman, have a normal relationship,

in and out of the bedroom. IC really really sucks."

"Even after my hysterectomy I was always a very sexual being. I was fortunate to have a husband that was not only my first but a very good lover. However ten years ago and approximately 2-3 years after my Vaginal Hysterectomy I started having pain. I had a rare cancer called non ocular sebaseous cell carcinoma. It was removed from the back of my head along with a large chunk of my waist length hair. It was sent to be biopsied and discovered it was a very rare cancer. It was sent to John's Hopkins who then ordered a larger margin to be cut out. So 2 days after my stiches were removed i was back under the knife to cut more out. I think what i felt the second time must be what a tight face lift must feel like. As they had a little less scalp to pull over the inscission. Ouch. Then 2 years of later I was Diagnosed with Hoshimotos disease. I ended up having my Thyroid and numerous cysts removed from my vocal cords. During my 5 years of being biopsied and cut on I was discovered to have numerous CYST, polyps and auto immune diseases even up to recently with the diagnosis of Sjorgens disease. I tell all this because I have always believed that IC is a

auto immune disease. I ended up losing my husband because of this disease. I began having terrible pain after intercourse. Then I would be having to pee so much that I got wrote up at work and eventually lost my job. I would try to hold it but would leak. This made me so raw. Then we would try to have intercourse. I started having the outside pain then. It felt like being tore open. I would bite the pillow and cry. I tried not to let my husband know for years because I was afraid he couldn't understand. I continued to deterate in everyway due to the continual pain inside and out. The lack of sleep while still trying desperately to play the wife role, the mom role and go to work everyday. I would sometimes bleed. When I started avoiding the sexual contact I eventual lost my battle to stay married. My husband's last words to me before I finally moved out was he was tired of me being sick all the time. So much for in sickness and health. I ended up getting very depressed, sicker and had a nervous break down. I was spending most of my time now on the toilet.

Even sleeping there. I wasn't diagnosed until my daughter found out what I was going through and had me go to a urologist. That was a full 8 years of full blown IC. I had symptoms of some degree since I believe I was a child.

Although I had a diagnosis I still received little help. I now cannot have intercourse at all. It as though I have been sewed up. The last time i tried 10 months ago the pain and bleeding was just too much for me. Thankfully I have a very understanding boyfriend. IC is the most debilitating disease of all my diseases by far. It has cost me my marriage, job, friends, travel." " Sex for me sometimes ends up looking more like a murder scene. I bleed when we have sex.

I don't know why. I have been going to the doctor for the last 6 years trying to figure out why I bleed. I've had Endometrial Ablation, a hysterectomy, and I still bleed. It hurts when we have sex , like he's going to rupture something.

I know it's going to hurt so I am tense the whole time. I don't initiate sex, which is what he complains about the most. Who wants to initiate, let alone have sex when you know how bad it's going to hurt. If only we could switch places for one day. Then he'd understand."

"I'm married 17 years to a man that is younger than me. When we have sex the pain hurts for days, even a whole week before it stops. The pain is in my pelvic, groin area, lower back, and genital area. The burn is like someone lit a match on my urethra. I must take prescribed

pain medicine before and after sex. Use Ice packs for the excruciating burn. He also has a disability. He has had 4 knee surgeries, and is in pain a lot. So we kind of let the sex go. He feels so bad when i'm hurting that he does not even want to have sex anymore. It has robed our intimate times. We have lost a lot. It is importent, but it's not the only way to show love for eachother. We are married, we are partners in pain. But we both are ok with it. We married for better or worse. So we hold hands, go out with friends. We are here for each other in sickness and health. It is really a touching subject to talk about. This disease is life wrecking. But we must fight the tears and look at the good things we have going for us.

Marriage is not about sex only. It's about loving and caring for each others needs. I hate having IC, although I am taking a natural remedy called UriAlive. It is taking away my symptoms of IC now for 5 weeks. But i'm afraid to have sex because it will trigger off all those IC symptoms again. I don't want to be in IC pain anymore."

"So typically I may have some burning and discomfort the next day .. but recently I actually almost blacked out during sex ... I wasn’t even sure why it happened because I wasn’t even in

super pain just my bladder felt heavy but woke up the next day with horrific uti symptoms."

May 27, 2018 My pain is at a level 5 right now. I used a boric acid suppository today, vaginally. It has seemed to help. If this burning pain is from a yeast infection, the boric acid should do the job.

"Boric acid has long been used as a very effective treatment for vaginal infections. ...

Since boric acid attributes as a mild antiseptic, antifungal, and antiviral agent, it is commonly used in the form of suppositories which is inserted in the vagina to treat yeast infection."

It's now 6:30 Pm and my pain is really intense. I'd say a 9 on the pain scale. The kind of pain where you start to panic and get the shakes. My belly is swollen and tender. I had to pull out the " big guns " and use a DMSO suppository! Hoping this helps or it's no sleep for me!

May 28, 2018 8:45 AM I was up all night. My bladder spasms were so bad it felt like I was in labor. It literally felt like my cervix was dialating. I have no cervix!

The pain is also on each side of my lower back.

I tried everything. I drank DMSO, used a DMSO suppository, used a DMSO/ CBD suppository .

NOTHING worked. My bladder is very angry right now.

I finally climbed out of bed. It's Memorial Day and my daughter is playing in the Orchestra at the cemetery and I'm missing it.

There's no way I could have gone. Once again, missing an important event because of this illness. I took an Oxybutynin . It's supposed to calm the bladder spasms. I don't take scripts if I don't have to, but this time it was necessary.

It's 10:10 and my bladder feels like a boulder. It's very hard and seems to be " balled up." Thought about going to the walk in clinic, but I'm seeing my Urologist Wednesday , so I'm going to try to tough this out. I don't know what's going on with my bladder. Maybe it's time for another hydro....

I've just applied an Oxydol patch. I forgot I had these. They were recommended to me by a member of my Facebook group.

"The Oxytrol for Women Overactive Bladder Transdermal Patch delivers consistent relief for four days and four nights. It offers full prescription strength oxybutynin, which works through the skin, not the digestive track. This overactive bladder treatment comes in a 4count pack to last you for 16 days."

It's 3:55 PM and I'm still in horrible pain.

Nothing I do or take is helping. My bladder is spasming so bad that it feels like it is pulling my pelvic floor muscles inward. It literally feels like it's trying to pull my urethra up inside of me. My lower back is hurting on each side. This is the worst pain I have had in a long time. In fact, it may be the worst. I really feel like I may have a kidney infection.

May 29,2018 I was able to sleep last night but only because I took a Xanax and two Tylenol PM. The cramping is still here, although not as bad .

I called my Urologist today to see if they had any cancellations . I knew they wouldn't , but I had to ask. The receptionist asked me if I was taking AZO. I told her it doesn't help. She then asks me if I had Interstitial Cystistis. When I replied yes her answer was , " Ah, I'm sorry."

The receptionist said my labs from last week were normal. I don't know what is going on.

The pain is now under my ribs. Could it be my kidneys? #ughhh Going to bed. My left side huts from bladder up to the ribs. Seeing doctor tomorrow .

Hoping we figure this out!

May 30, 2018 Went to see my Urologist today. I did my usual weigh in and the nurse asks how I am . I say " ok I guess, been in pain."

She replied, "your bladder?" My bladder?

Really? Well let's see, I'm at a Urologists office.

Of course it's my fucking bladder! I tell her how I'm spasming really bad and that the pain is in my lower back and side. She asks if I'm still taking Elmiron, I say no. The doctor comes in asks what's going on. He then asks if I'm taking my Elmiron. I tell him no and he's says, " because of the price?" I then proceeded to tell him how it costs between $300-$700 depending on the insurance provider. I told him about my hysterectomy and how I would flare from the hormonal fluctuations when ovulating .

He then looks at me and says , " obviously it didn't work."

I'm sitting there looking at him thinking, really this is all you can do for me? I told him isn't there some kind of shot you can give me or something to help? He offered for the nurse to give me an instill. I've never had one and with the way my urethra is feeling, NOBODYS touching me down there.

He said it's been almost two years since my last hydro-distention and said I could do it again. It wasn't that bad last time , so I scheduled the appointment . I told him I think my current flare is pudenal nerve related and he referred me to a doctor that works in the same office .Im going tomorrow. Then he left the room. That was my whole visit. No Examination. Nothing! He just looked at me like I was an invisible person he couldn't help, and quite honestly I felt like he almost didn't believe me. I almost felt guilty for asking for help.

I was able to convince them to let me try some blue pill that helps with spasms, Uro -MP .The nurse also offered to prescribe me Tramadol for pain. I declined. Not all of us are out seeking pain pills! I happen to have a very high pain tolerance, so if I tell you I'm in pain, you better believe it .The pharmacy called to let me know this particular prescription was $195.

ONE HUNDRED AND NINETY FIVE DOLLARS? That's with insurance! She asked if I wanted it filled. I said yes, then she proceeds to tell me that she will have to special order it because they don't fill it that often. Of course they don't.

Why is it that all of the meds they say will help us cost so much money?

There's no cure , and we can't afford our scripts.

I'm excited to see the nerve doctor tomorrow . She will be much easier to talk to.

I'm going to tell her what my husband and I did. that I think it is the cause of my pain.

May 31,2018 Today's doctor appointment was a fucking joke! I met the new doctor and proceeded to tell her about my pain. As I was talking to her she interrupted me and asked me what happened to my arm. I told her I had scratched it on a piece of metal. She asked if I had had a tetanus shot recently and I said I didn't know.

She opened the door and yelled for nurse. " We need a Tetanus shot in here!". I'm sitting there thinking, "look lady, I'm here for my bladder pain." She proceeds to tell me that I am not leaving the building until I receive my tetanus shot and that a nurse will take me to the quick care unit. Apparently Tetanus is a big deal. I've always heard that you need to get a tetanus shot, but never knew just how bad tetanus really was. The doctor told me she had a patient, a dentist that had cut himself on metal and did not get a tetanus shot.

He is now paralyzed from the neck down. I feel like somehow I was meant to see this doctor. I was having horrible bladder spasms and pain that I had never had before. THANK GOD I went to see her ! #getyourtetanusshot Now to the joke part. I told her about how I thought there was something wrong with my Pudenal nerve . Told her how I may have been molested as a child . Told her how I fell out of a tree and landed on my back when I was ten years old. I even put on my " big girl panties" and told her what my husband and I had done in the bedroom that I think damaged the nerve .

She looks at me weird. I even showed her the exact area that hurts, and told her it hurts when I sit. I told her I think I may have PGAD because the pain is always there . I told her I have had this pain since childhood. She then looks at me and asks if I've been tested for herpes.

HERPES? Are you fucking kidding me? Did she not read my chart ? That's one of the first things I did when I started having vaginal pain, and I'm sure every other woman would do the same thing. I wasn't there for herpes! I was there because I have IC and my fucking vagina hurts! OMG ! I was so mad! She didn't even listen to me!

She then had me sign a release for my gynecologist to give her my records so she could see if I had been tested for herpes.

RIDICULOUS! I have IC lady! My IC doctor works in the same office as you! He referred me to you yesterday!!! Why does this always happen to me? She prescribed me Gabapentin, and the nurse walked me to the quick care to get my tetanus shot. After that I was given lab paperwork to get my Vitamin D and B12 levels checked. Crazy because I was just discussing Vitamin D deficiency with my online group.

So anyway, another wasted doctors office visit. I don't know what to do. Do I wait and see if the Gabapentin helps with the nerve pain and cancel my Cystoscopy? Could it really have been tetanus that made my bladder go crazy all of a sudden? I feel like the whole medical system is one big huge guessing game. If she had just listened to me and did an MRI of my Pudenal nerve she would have seen the cause of my pain. I'm scheduled to go back in three weeks. #ughhhh

June 2,2018 So far the Gabapentin and little blue pills seem to be helping with the nerve pain. Those little blue pills happened to cost $213 by the way! And that's with insurance. Every time I have to sit down it hurts. It hurts really bad when I have to go somewhere in the car. Gee, I wonder why? PUDENAL NERVE maybe? Why don't the doctors listen to us? We know our bodies best. I clearly told her what was wrong.

No wonder people go to Mexico to have procedures done! I have great Insurance . I just want them to do what I ask them too. I've been dealing with this long enough to know what's causing my pain. The Tetanus was just a fluke thing making my bladder act up. #IWANTTOSCREAM!

June 4, 2018 Today my bladder keeps spasming. As it spasms it feels like it is pulling my urethra inward. It burns. It burns from urethra all the way up to my bladder . The burning is almost more uncomfortable than the spasms. Imagine having a red hot nail, or poker stick as I like to call it, shoved up your urethra.

Now imagine having to work, take care of kids, and deal with this horrible burning all day long.

It's MISERABLE! Every time I sit down , that hot nail pokes deeper and deeper into my bladder.

Every time I drive or ride in a car, that hot nail repeatedly jabs me over and over again, digging deeper and deeper inside of me over every bump we drive over. It FUCKING hurts!

Life must go on. I can't sit in this recliner all day long. I have a family to take care of. I can almost say that I have become " used" to the burning . It's been here for so long that I have learned that by keeping busy and moving about daily it seems to lesson the pain. It's when I sit down and try to relax that the pain intensifies.

Let's just say, I don't relax much.

Sex is a foreign word to me. I avoid it at all costs. I can't stand for my husband to touch me down there. It hurts. I don't think he truly understands just how bad it hurts. Sometimes I bleed when we have sex. Sometimes so much he needs to wipe himself off with a towel. I feel useless as a woman. I don't even know why he stays in this marriage. I know there are other ways to be intimate, but when you are in this much pain, that is the last thing on your mind.

The pain during and after sex is just not worth it for me. #FML

June 5, 2018 The pain is pretty bad today. I called my Urologist and asked if I could get a prescription for Myrbetric. It's used to treat overactive bladder. The pharmacy called to let me know that it was not covered by insurance and would be $400. I guess I won't be taking Myrbetric.

How the hell are we supposed to get relief if we can't afford our prescriptions? So many of us are suffering. I popped another Gabapentin , but it doesn't seem to be working.

The nerve doctor called and said my B12 levels were low and I'd need a shot. I'm so glad she's worried about my B12 levels, NOT. That's not why I went to see you lady! #doyourjob

June 6, 2018 Going to get a B12 shot tomorrow morning as it was ordered by my new so called nerve doctor. Cause low levels of B12 are so the cause of my pain. NOT! My little blue pills aren't working. The Gabapentin is not working. I'm burning so bad that you could probably roast marshmallows with my crotch! #overit

June 7,2018 Ok,I feel bad. Maybe I was too hard on the Neurologist. I think she's on to something. My B12 levels were low. Really low. To be honest, I've never really thought about adding B12 to my daily cup of pills. Not one single doctor I have been to has asked to test my B12 levels.

It all makes sense. B12 protects our nerves.

Why do we hurt? Because our nerves are exposed to the acidic our urine. She gave me a B12 injection, and I have to go back once a week for another. My Vitamin D levels were low as well. I have added both B12 1000mg, and Vitamin D3 2000mg to my daily concoction.

Maybe it's all in my head, but my pain isn't as bad today. Could it really be the B12 that has caused all of this madness? Ive already posted in group today about this and several women have told me their levels are low as well.I found an interesting article today online that related low B12 to IC. PLEASE READ THIS http://www.b12deficiency.info/ blog/2014/03/16/neurological-symptoms-inb12-deficiency-are-routinely-ignored/

Low B12 levels can cause fatigue, memory loss, clumsiness (that's me), blurred vision, AND burning pain. B12 deficiency affects our brain, our central and peripheral nervous system that runs through our entire body. I never in a zillion years even thought to ask for my B12 levels to be checked. It certainly makes sense. So, everyone, GO GET YOUR B12 LEVELS CHECKED! The hole herpes thing the doctor said the other day has had both me and my husband all worked up. Neither one of us has been unfaithful, but still the thought is in our heads.

He's going to get mad at me saying this, but he's had an itchy butt for months. How in the hell would we have herpes? Certainly it isn't, because we've been married 17 years and have never had any issues. I'm taking food grade hydrogen peroxide just in case. Even though I've been tested for STD's, I'm not taking any chances. It's like when someone says they have lice. Your head starts itching. Viruses cannot live in an oxygenated environment. I add 5 drops of food grade H2O to a full glass of water. Its VERY important to follow protocol with this stuff. I will include a dosage chart later on in this book. If there's any viruses in me , I'm gonna kill them!

June 10, 2018 I'm feeling ALOT better. The nerve pain in my vagina is almost completely gone. We've upped my Gabapentin to 300mg twice daily, although I'm still taking the old dosage of 150mg and just doubling the dose. ( don't want to waste anything) I though of something last night. Almost everyone in my immediate family suffers from insomnia. As far as I can remember I've always had trouble falling asleep, as does my Mother and Brother. Our body naturally produces melatonin which helps us fall asleep. Not only does melatonin help us sleep, it helps heal peripheral nerve damage. Melatonin helps to regenerate the nerves. DING DING DING! I just ordered NOW brand Melatonin . I chose this brand because it had the least fillers. Make sure to read the label on your supplement bottles! If you can't pronounce it, don't buy it.

I'm going to mention this to the girls in group and see if we can do a study of our own. Could this be the cause of IC?

June 12,2018 Well, curiosity killed this cat! I went to my PCP and had them test me for Herpes.She said

most people don't even know they have herpes. It can be caught at a very young age from pre-school or day care. I've never really researched herpes because I didn't need to.

I've always had little blisters that show up now and then inside my mouth on my bottom lip. I'd always bite them and sometimes fluid comes out. Not once in my life did I ever think this could be herpes until now. For the last week or so I've been waking up with several of these blister on my lower lip. More than usual . As much as I didn't want to do it, I'm glad I got tested. My PCP said herpes can make the urethra hurt really bad . Ughhhh! What if this has been herpes all this time? I read somewhere that herpes can cause IC. I also read they Wellbutrin can cause a herpes breakout! This all makes sense since all of these current symptoms started when I started taking that Wellbutrin. The sad thing is, the Wellbutrin is helping my depression tremendously. I don't know what to do. I guess I will just wait three more days to get my results. #getcheckedforherpes I'm going to continue taking the food grade hydrogen peroxide (5 drops in a full glass of water 3x a day) as it is known to kill viruses. I will also be taking L-Lysine which is supposed to help prevent herpes flares.

June 18, 2018 Pre-Op Day It's 5:35 PM. It's the first time I've sat still today. I had my pre-op appointment today. The nurse went over everything with me , and then I waited for the doctor. My Dr came in, sat down, and said ,"Are you ready to do this?", to which I said yes. " It's been about five years since your last one, right?" Ummm NO! It's almost been two years! I asked if he was going to do fulguration for the Hunners lesions again, and he said yes. He then said ,"see you tomorrow, the nurse has some final papers for you", and that was it. He didn't even look at my chart! If he had he'd have known it's only been close to two years since my last hydro.

Doctors know they can't help us. They get us in and out as quick as they can because they don't want to talk to us long enough to tell us they can't help us, or because they aren't educated enough to deal with us. ( This is my own personal opinion from experience) I really felt completely defeated again. I thought this doctor actually cared. Imagine how many doctors treat their patients and don't even look at their charts! I'm mean, come on! You're doing a surgery on me and you didn't even take

the time to read my chart? Doctors see hundreds of patients a week. They can't possibly remember each and every patient. It's critical that they read are charts. I'm just another IC'er who's tossed aside.

June 19,2018 Surgery Day I didn't sleep well last night. I have a headache. I'm not nervous about the actual surgery. It's the aftermath I'm worried about.

I'm sure I'm not the only IC'er who worries about what's going to happen after the surgery.

There is always a risk of infection. I'm mentally prepared a little better this time since I have the last surgery to compare this one to. I'm worried I'm going to have horrible burning pain. I know the stretching will benefit me . It worked well the first time, and I am hopeful it will work again. I'm a little antsy about someone going near my urethra, let alone sticking a device up there.

Although this is classified as a simple in and out procedure, I wish they would allow us to stay overnight for observation. Things can quickly become irritated or infected. There is even a risk for perforation of the bladder.

Others I have talked to have Hydrodistention up to two times a year. I waited as long as I could , probably too long. Now that I know what signs to look out for I hope to be better prepared in the future . #fourmorehours When I woke up I wasn't horribly uncomfortable. There was a very strong urge to urinate, but not near as bad as the first surgery.

The nurse put a bedpan under me but I wasn't able to go. She brought me two Pyridium. My doctor brought in a picture of my bladder to show me. He said everything went fine and that I should really be taking my Elmiron. My bladder didn't look that bad to me. At least not how I expected it to look. I got dressed, with the help of the nurse and she walked me to the bathroom. I was able to pee. She then wheeled me to the recovery room and brought my husband in. He wanted to speak to my doctor.

Usually after my surgeries the doctor will go to the waiting room and tell my husband how everything went. He wanted to here how the surgery had gone, and had some questions to ask. The doctor finally came by to see us, and my husband asked him how everything went.

The doctor seemed a little annoyed, and said ," I already talked to your wife about it." My husband said yes I know, but I want you to tell me, she probably won't remember. The doctor

said, "Well, it was the same procedure we did, what, five years ago?" There's that five years again. I shook my head no, and said, "No....It hasn't even been two years." Really? We just had this conversation yesterday at my pre-op appointment. My husband was now annoyed.

The doctor then tells my husband, " She has severe Interstitial Cystitis. She really needs to take Elmiron to get better. Go home and Google Interstitial Cystitis." That was it. He turned around and walked away.

So here I am again, being brushed off by my own doctor. They know they can't help us so they push Elmiron on us and send us on our way. These doctors know how much Elmiron costs but yet they do nothing to help us . I guess I will be looking for a new doctor. He should have been supportive and assured my husband that I was in good hands. Instead he acted like we were taking up too much of his time , like it was a huge inconvenience for him to come talk to my husband.

My husband wants me to try the Elmiron. I explained that it can take months to even start working . I told him how it will make me lose some of my hair. I've used Elmiron before. It made me bloat horribly. Made me cramp, and my eyebrows and eyelashes were falling out.

I just don't know if I can do it. I feel horrible when I take Elmiron. Is it really worth it? I'm going to try to stop drinking coffee. I have this " new" bladder now and I don't want to irritate it. My head was pounding today because I didn't have coffee.

My pain isn't that bad. It hurts when I try to pee. I didn't take any pain meds, they make me sick. Going to take two Tylenol PM and try to sleep.

June 20, 2018 I slept pretty good. Woke up a few times to pee. I have to really concentrate to relax the pelvic muscles and not force the urine out. Pain is still not bad. It hurts when I change positions too quickly. My bladder feels swollen, but I think that's normal . I did just have it burned and stretched. I'm trying to rest, which is very hard for me. I have to leave town tonight to go to my daughters College orientation. What was I thinking? #exhausted

June 25, 2018 Feeling pretty good today. Honestly the pain since I've been home from the hospital has been at the most a level 5. I'm peeing less often, and when I do pee it's a lot more urine than before. I'm still really fatigued, I think from the anesthesia . I haven't had any coffee since my surgery. I'm going to try to quit. I feel I owe it to my " new" bladder. I need to take care of her . I've been having horrible headaches . Not sure if they are from the coffee withdrawals or the anesthesia. Haven't taken any pain meds except for a couple Tylenol, and that was for the headaches. I tried the Elmiron but once again it made me cramp and bloat horribly. I just don't know if I can deal with all these side effects. My bladder is still spasming a little.

When it does so it feels like it's in a hard ball .

Feels like a heavy boulder in my crotch. I've been drinking a lot of water. I even made some special CBD water which really seems to calm the bladder. I will teach you how to make it later in the book. I'm enjoying being a little lazy, and by lazy I mean not working out. It's so hard for me to sit still! #thankgodforxanax

June 27, 2018 I didn't go to my post-op appointment today. There was no reason to. I've been through this surgery before. I wasn't going to waste a $60 co-pay just to have the doctor ask how I was feeling. They never do any physical examinations, so what's the point? If I wanted a Psychologist, I'd get one. All he was going to do is ask how I'm feeling and say " Take your Elmiron." I know how this game works. Nothing gets done. Those of us with IC are not treated accurately by the medical community. I know there are a few exceptions out there, but I haven't found that yet. I will say my, doctors receptionist Maria is the bomb!

I'm feeling pretty good. I'm still really weak from the surgery, but my bladder pain is down to a two at the moment and that is amazing. I am still sore and crampy , but that is to be expected. I did just have surgical instruments shoved up my urethra and my bladder burned and stretched! I'm upset at the fact that my own Mother hasn't once bothered to call and see how I am doing. I sent her a picture today explaining my illness , hoping to get some type of reaction out of her. Nobody understands our illness. That is why it is important to educate

the world on Interstitial Cystitis . That is my goal with these books. We are not taken seriously! Simply just brushed aside by loved ones who think we are hypochondriacs .

Shrugged off by doctors who think we are addicted to pain meds. I will continue to spread awareness anyway I can . If it will help just one person to be treated correctly than I will feel I have succeeded.

Christian's Story Hello! My name is Christian. I am 20 years old, and a freshman in college.I have a furbaby, German Shepard, named Toby.I spend my time working, hanging with friends and family, and trying to better myself everyday.

Now on to my story...

I was first diagnosed last summer but I have had symptoms since I was 14, so for 6 years.

At the time I didn't really think any of my problems were serious because I was always told that it was normal for a female to have problems like this a few times in her life. I found myself at a local gynecologist at least once a month, sometimes more, for 6 months straight.

Every time I went in, I would do all the tests, and leave diagnosed with yet another yeast infection or UTI. I would take the medication just like I was told, I would feel better for a few weeks and then everything would just keep coming back. I finally just stopped going to see the gyno and hoped it would all just fade away.

But as all of you know, it didn't. Going thru school would be stressful. I found myself so uncomfortable and would go to the bathroom and just cry, then eventually missing a lot of school. I eventually decided to go to another

doctor, but still got the same thing every time.

"It's just a yeast infection." Skipping on a bit, I have been to 6 different doctors, including my family doctor, a few different gyno's, urgent care, and even the hospital. Until one day, my grandma found me laying on the bathroom floor screaming, with blood in the toilet.I had had enough. So I went to yet another gyno, rated the best around my area. This was the first person to sit down with me and said, "I don't know what's wrong with you, but I do know SOMETHING is wrong." Just her saying that gave me hope. She then recommended me to a Urologist, who doesn't only work with the bladder, but the lady parts and is also a surgeon. After just one appointment with him, I left the office crying. Not with fear but joy. He didn't give me good news but I finally got different news. He thought I had IC but had to do a few tests to make sure. I went back to his office once every week for about two or three weeks, did all the tests, and then had my surgery, which he did himself. I don't know if everyone has to have this procedure but he basically took a look at my bladder and "blew it up." It wasn't really a "surgery" in my opinion, but they called it one. I left that day knowing I had IC. Ever since then, I have not been on any treatments, my insurance doesn't pay for

any of them (Which is weird since we have the top insurance in my area) and I didn't feel the need to pay hundreds of dollars on something that may not even work, just to be let down even more. I take it day by day and hope everything works out in my favor. This has led to serious depression for me, as I am sure it has everyone else.

This is the first time I heard about an IC support so I am hopeful. I'm looking for what everyone else here wants. Support, help and freedom. Thank you for taking the time to read my story. I want to keep everyone updated frequently and I am excited to hear other stories and learn new things about IC care.

Much love đ&#x;’•

Kenope's Story My name is Kenaope , my friends call me Kenzo. I am a 41 year old woman living in Orlando FL. Just like many others, I was diagnosed with a chronic debilitating bladder condition called INTERSTITIAL CYSTITIS,12 years ago after being misdiagnosed 5 times by 5 different urologists. All the doctors I went to concluded that I had urinary tract infection even though they didn't find any infection or bacteria in my urine. Two of the doctors even suggested that my pain was psychological which was really upsetting because I knew something was terribly wrong. I lost hope & thought I would never get to find out what was wrong with me. I kept praying until one day I decided to do a search online about different bladder conditions. While searching I came across a bladder condition called Interstitial Cystitis which I had never heard of and it matched my symptoms 100%. I became suspicious right away and strongly believed I had it.

INSTERSTITIAL CYSTITIS or as we call it IC, is a painful bladder condition that usually consists of multiple symptoms.

Most IC patients have recurring pelvic pain, pressure, or discomfort in the bladder and pelvic region, and urinary frequency & urgency.

The pain becomes more severe as the bladder fills and is relieved upon urination. The bladder pain people with IC feel can range from a dull ache to piercing pain. Peeing may feel like just a little sting, or it can feel like serious burning.

Imagine your bladder has an open wound inside and every time there is liquid in it, it’s as though someone is pouring lemon juice in it.

Now add to that, the feeling to pee urgently night and day. IC may also be referred to as painful bladder syndrome (PBS) and chronic pelvic pain. According to ICA (Interstitial Cystitis Association) 4 to 12 million people may have IC, 3 to 8 million women in the United States have IC & 1 to 4 million men have IC as well. The condition is extremely uncomfortable.

Consequently, it won’t show up on regular urine cultures for bacteria and other pathogens. It is difficult for sufferers to perform daily activities such as shopping, leisure activities & housework. On an average, a person urinates seven to eight times a day, however, in severe cases of IC, urination may occur around 40-70 times a day and 10 times during the night & in my case up to 60 times a day and 15 times during the night.

IC is not an infection, but is often mistaken to be a bladder infection. Factors contributing to Interstitial Cystitis are: a defect of the epithelium layer of the bladder, leaking epithelium allows toxic agents in urine to irritate the bladder wall. Other anticipated, but not clear, contributing factors include heredity, an autoimmune reaction. Various therapies and medication may provide relief from the symptoms for IC; however, there is still NO CURE for this horrible disease.

For a number of women, constant trips to the bathroom control their lives. Numerous women are desperate to minimize an extremely painful, stabbing pain in their pelvis. Interstitial Cystitis can be downright unbearable for some women & men preventing them from going to school, work, or participating in any of their normal day-to-day activities. Too often women just “live with it� for years before looking for help. A person with IC could see up to five different practitioners over the course of many years before being accurately diagnosed with Interstitial Cystitis. Many different techniques have been tried but none have a huge success rate to date. After reading about Interstitial Cystitis online, I printed the information & immediately looked for a urologist to discuss

my suspicion. I found a urologist in the Philadelphia area where I lived at the time. Just like the previous tests, no bacteria or infection was detected in my urine. Luckily the doctor agreed to perform a biopsy & cystoscopy as that was the only way to confirm if it was Interstitial Cystitis . Because I desperately needed to know, I was very persistent & begged him to perform the procedure. I had no health insurance at the time & when he told me that I had to pay about $3500 for the cystoscopy & biopsy I knew I had to come up with that money somehow. I had to ask a friend for a loan because I was tired of suffering & was determined to find out what was causing me so much pain. A few days later I got my results and I was officially diagnosed with IC. The fact that I took charge of my health really helped me with the diagnosis. Although I felt relieved that I finally found out what was wrong with me, when the doctor told me that it was a chronic condition that had NO CURE, I was very sad & confused. I remember thinking I was going to die. I remember feeling very helpless and defeated. I had to educate myself about different ways to cope mentally with the news I had just received. It was very apparent to me that there might be millions of people out there who have been turned away by doctors and

been told nothing was wrong with them or that it was just in their head.

IC has robbed me of my joy and happiness.

It's draining & also causes severe sleep deprivation. It limits one's ability to work or do normal things. Most people take for granted access to restrooms. For people like me, having to use the restroom can be a medical emergency. At any moment, I can have a sudden and painful urge to use the restroom.

Waiting to go is not an option and it often happens when a public restroom is not available. Its even sad when we get turned away when we need a restroom in areas where they don't provide public restrooms. Some states have restroom access laws that help people with such conditions. I am not aware if the state of Florida has a Restroom access law specifically for people with conditions like Interstitial Cystitis. However, I am aware that other states have the Ally's law (also known as the Restroom Access Act) for people with Crohn disease, I also know that Florida is not among those states. I have attempted to contact senators in my state to ask for help in passing a restroom access law or reviewing which ever one may be available. I have never had any luck. There are so many issues

surrounding Interstitial Cystitis that must be solved. Not everyone is ready to use their voice as an advocate, which is often due to the symptoms of IC and effects of having a condition that some see as not socially accepted to discuss in public. The thing about IC is that it has to do with things most people don't like to talk about, such as urinary problems, pain in private places, etc. I think it would help if we could somehow get the word out there to the public. When I mention Interstitial Cystitis to people they tell me they have never heard of it but I have also heard others describe that they have had similar symptoms which means that they may not be aware that it could be something serious like IC. I have read about a few celebrities that shared their stories about IC but I still haven't heard of anyone getting out to raise awareness like most people do with breast cancer and other diseases. I think raising awareness may also help with funding for IC researches & clinical trials. I want to encourage anybody in the public eye to help inform the public about this terrible condition. The combination of chronic pain and having your life ruled by your proximity to the nearest restroom is hard to cope with, and the condition doesn't just impact your physical wellbeing, but your

emotional health as well.

I have been living with shame & embarrassment for so long. I was always afraid that if people knew that I have this terrible disease they would look at me differently. Because of IC I now have a low self-esteem & feel inadequate at times because I can't do a lot of things I used to do. I don't go out as much as I used to.

Staying home is always better because I can frequent the bathroom as many times as I need to without the shame & humiliation.

Living with this condition causes us to socially isolate ourselves, it's depressing & affects relationships. I have lost a lot of friends. I've lost & changed jobs multiple times. I even had to change my career. I have lost interest in a lot of things I used to enjoy. When I initially came to the United States in 2004 to do an internship at Disney World, I had no plans of staying, but after learning about my diagnosis I decided to settle here so that I could receive better medical care after learning that there were no urologists who specialised in treating IC in my continent of Africa. This means I made a tough decision to live far away from my

loved ones who could care for me when I need support. It is the most difficult thing one can ever go through. In 2014 I had the privilege of becoming a US citizen & thought it would be easier to get medical assistance from the government but that hasn't been the case.

There has been times I couldn't work at all & was denied disability & medicaid & it is not easy for someone who is already battling chronic conditions to afford a disability attorney, so I just gave up. I have always survived by getting financial help from close friends & family members & working when my condition isn't severe. I wear a medical bracelet that indicates that I have IC & I also carry a Restroom access card around from the IC association to prove that I have a chronic bladder condition in case I need restroom access urgently. Unfortunately in most cases we are denied restroom access. I really wish I didn’t have to explain what I’m suffering from just to get access to a restroom, but sometimes it is necessary. One particular incident happened at a local post office here in Orlando Florida two years ago & while waiting in a very long line, I felt the urge to pee so bad. I felt a lot of pain, pressure & inflammation, I was there to mail something important to my Mom who lives in Botswana, Southern Africa. I remember

thinking maybe I should just leave & drive back home to use the bathroom but I was in so much pain that I wouldn't be able to walk to my car unless I relieved myself. I requested to speak to the post office manager & begged to use the bathroom, he said it wasn't possible because the bathrooms were not for the public, I was in tears and pulled out my restroom access card & also showed him my medical bracelet hoping that he would realize the seriousness of my condition but he still refused to let me use the bathroom. Even with the tears running down my face he had no remorse. But then he was probably just doing his job which is why we need restroom access laws to help us in such situations. So after being denied a restroom, I was obviously in a lot of pain & my bladder couldn’t hold the urine anymore. I will never forget how I felt as I stood there seeing all those people waiting in line. I was very embarrassed & the pain was too severe for me to even walk outside. It felt as if I had needles inside my bladder and my whole body. Just when I thought I could try to slowly walk outside I felt the urine coming out, I looked down and saw a few drops on the floor, although it wasn't a lot I felt so humiliated. I immediately felt some relief and was able to leave. One nice lady followed me outside.

I didn't know that she had witnessed the post office manager denying me the bathroom. I will never forget how caring & compassionate she was. She shared with me that her mother had an over reactive bladder and although she didn’t have IC, she understood my pain because some of the symptoms are similar.

She was just an angel. I went to my car & just drove home without doing what I went to do at the post office. I really understand that the post office & other businesses have strict policies regarding giving customers access to employee restrooms, but no one should ever have to suffer the way I did and be humiliated the way I was. This was not the first time I was denied a restroom when I needed it the most. I think we just learn to hide our pain and shame very well. The sad thing is that the restroom access card I carry around explains in detail why I need access to a restroom, what the disease is, how it affects me & the pain I feel when I feel the urge to go. It doesn't seem to be convincing enough. Imagine being in pain and being denied the one thing that could actually give you relief, (A RESTROOM).

Although emptying the bladder relieves the pain, it's only momentary.

When I travel long distances I carry a bucket and tissue in the car so that I can relieve myself

if I can’t get to a restroom fast enough.

Sometimes depending on the location I may hide behind a tree, building or my car to pee but worried about getting arrested if caught by the police. In some cases I have to leave a location where I was denied a bathroom to drive around in pain until I find a restroom.

Once I feel the pressure and pain in my bladder, it's hard to focus because of the inflammation and you can easily get in to a car accident because the pain causes your vision to be blurry (at least in my case). It's not safe at all to drive while in this kind of pain. In 2014 I was on a date at Epcot Center, I remember having a flare & had to go to the restroom every 10 minutes after being there for an hour. When I told my date that I had to go again he looked at me and said" but you just went 4 times already’’ I was very ashamed but I responded by saying" yes I know I just went but I need to go again". I wasn't ready to share that I had a bladder condition with someone I was just getting to know but I felt obligated to explain what was going on. Normally when I'm asked why I pee a lot I say I drank too much water or coffee even though caffeine irritates a bladder with IC. I always feel like if I blame the frequent bathroom visits on the coffee then I wouldn't be judged but eventually people can tell that there

is much more going on even if i have a smile on my face. Most of the times we want to hide the pain & try to act normal so we can be accepted by society. We fight a never ending battle, trying to find relief, getting up each & every day, going about our business trying to be brave. It is very important to educate those around us & encourage them to read & learn about the condition so they can know how to support their loved ones suffering from chronic pain but most people don't have time to do that & they end up being annoyed by our mood swings and the frequent bathroom visits. When I go to the airport or to places where there are very long lines I often ask for special assistance because at anytime while waiting in line I may have an urgent need to go to the bathroom multiple times. Getting special assistance mostly involves a wheelchair which is very embarrassing because no one sees a disability when they look at me. It takes a lot to even convince people why you need this kind of assistance when you look just fine. It hurts even more when they don’t believe you.

Dealing with an invisible chronic condition like IC is painful & draining enough so the Restroom Access Law can help ease some of the frustration caused by the inflammation, pressure & pain from the bladder. When we are

denied restroom access, it doesn't only leave us in pain, it makes us feel inadequate, helpless, worthless, alone, abnormal, hurt & hopeless.

One of the most difficult aspects of living with IC is that people like us who have it don't look sick. We try to hide our pain & look normal.

A few years ago I used to frequent the emergency room a lot due to the severe pain because I didn’t know what else to do. I ended up with thousands of dollars in medical bills that are now on my credit report. Then I learned that the ER doctors couldn’t really do anything for me except help me with the anxiety so I reduced my ER visits so now I only go if it’s really necessary. I remember them always asking’’ on a scale of 1 to 10 how would you rate your pain’’ and when I would say 10 they would look at me in such a way that made me feel like they didn’t believe me or that I was being dramatic. It is very discouraging because the condition is not visible for them to see the pain you are experiencing & they always referred me to a urologist because there isn’t much they can do for me. Throughout the years I've tried many treatments & medications.

When I have a cough it is almost hard to cough & sneeze with no urine leakage. Before my IC got very severe I used to be able to work out a

lot even though it was challenging, but now I am not able to work out like I used to because I can't run or jump. When I have my 'best days' I take walks & try to do light exercises. I have lived with this terrible disease for so long pretending to be ok. What hurts the most is when people say, “but you look great, just get over it or you don't look sick or you are being dramatic when you are actually in pain. I also try to stay away from acidic foods, caffeine, too much sodium, potassium which are some of things that aggravate the bladder. There are so many other important nutrients that my body needs like vitamin c but they worsen the condition. I still remember during one of my doctors visits he said to me, "if you want to piss your bladder off you should continue taking vitamin c". For some reason I was still taking it until I realized that he was right. I try to maintain a healthy lifestyle & diet but its very hard because most foods & drinks affect the bladder. As I already mentioned, It is often hard to keep jobs due to pain therefore it is impossible to afford the treatments that could give some relief or even to have medical insurance so the condition just worsens & worsens by the day. Interstitial cystitis is also affected by stress & it’s impossible not to have stress & anxiety especially when you go for

long periods of time without seeing a physician.

I only see my urologist when I have insurance.

What's sad is that when I filed my tax returns I got penalized for not having health insurance for many months or years even though it was due to a chronic condition. It’s painful enough to suffer from this terrible chronic condition but what worsens the pain even more is when the government punishes me for my suffering. If I don’t have a job I can’t afford health insurance.

Another frustrating thing is when I have a job interview & have to explain why I didn't stay long at the previous job or why I was let go. I try to hide my pain & pretend to be normal until I have flares & have to explain to my employer why I have to go to the restroom every 10 minutes. I never say anything until the pain becomes unbearable. I always end up getting frustrated & feeling insecure because other employees start to gossip about it & if I share that I have a medical condition they often say I look fine & that I am always smiling. Sometimes I have to call out from work & stay home because of flare ups & employers end up complaining about my poor attendance & often people assume that I go to the bathroom a lot to avoid work or that I am lazy. I've even been accused of lying about having a medical condition. The combination of pain & frustration

can easily cause one to quit a job. This causes a lot of emotional distress. When I get a different job the same thing always happens. I avoid going out with friends because I don't want to have to explain why I'm the only one getting up to go to the bathroom every 5-10 minutes while we are at a restaurant or event.

For us going to the movies is a waste because its easy to get up 6 to 7 times to use the bathroom.

Living with any invisible chronic illness is not easy & for some IC patients like me there may be other chronic conditions involved. Before I was officially diagnosed with Interstitial Cystitis , I was already dealing with severe endometriosis and ended up having a total hysterectomy in 2014 at age 38. My uterus, ovaries, cervix & Fallopian tubes were removed after many years of suffering. It was the worst thing I ever had to deal with because I always dreamed of having kids. Interstitial Cystitis & Endometriosis are often referred to as 'the evil twins'. As I continue to educate myself on this journey, I learned that people with Interstitial Cystitis often have endometriosis & IBS. As if the ‘evil twins’ weren’t enough, I was diagnosed with Irritable Bowel Syndrome (IBS) 2 years ago & had both the colonoscopy and endoscopy

procedures. After the endoscopy was performed I tested positive for helicobacter pylori infection which I was treated for. Having a total hysterectomy clearly didn’t treat the endometriosis because I’m still struggling with the pain, now add the horrible side effects, early menopause, extreme fatigue & the trauma of losing my organs. I have also attempted to participate in clinical trials & research studies as a way to get involved in the fight to find a cure but most of the studies are conducted out of state. I have reached out to several researchers/urologists in other states to express interest in getting involved in the clinical trials but they do not fund patients for travel & accommodation expenses & I can't afford it as they require frequent visits. I just feel helpless because I long to help myself & others but the resources are very limited. My wish is to one day start a non-profit organization for people who suffer from Interstitial Cystitis & bring awareness because a lot of people are not aware of it even though it affects millions of people. After suffering for so many years I have decided to turn my pain in to something positive. I feel so much relief even just writing & sharing my story with you. There is just so much power in talking about it & having support from friends & loved ones plays

a major role in the healing process. I do hope that my story can help someone out there who has lost hope & doesn't think they will ever get a proper diagnosis. I have been there, it took many years, a lot of medications, many doctors, a lot of money, tears, prayers & the willingness to educate myself, it took a search online to finally get my diagnosis. And there is so much power in knowing.

PLEASE help me get the word out to the right people, Representatives, Mayor & Senators. We need a RESTROOM ACCESS LAW in our state & other states that can help reduce our pain & suffering and give us a better quality of life. This condition is debilitating & causes sufferers to experience feelings of depression, anxiety, difficulty in concentrating & insomnia. Frequent bathroom needs & fatigue from getting up several times at night to urinate completely incapacitated me. The treatments & medications are extremely expensive and even with insurance it's still a lot as you have to keep trying different drugs & treatments to see which one of them will give you relief. I have tried different treatments in the past when I had health insurance.This included bladder instillations administered through a catheter. I didn't feel any relief because I wasn’t consistent, I couldn't afford the core pays &

never completed the treatments. I have not seen my urologist since my last cystoscopy in 2015 because I have been in and out of jobs.

Like other chronic conditions, Interstitial Cystitis is not supposed to be left unattended, if left untreated, it can have a long-lasting impact on quality of life. It's scary to know that my bladder is getting damaged every day because there is no cure. Yes I am a strong person but I have fears, I fear having a Cystectomy, a surgical removal of the bladder & bladder cancer.

I pray for a miracle every day, I pray for a cure for Interstitial Cystitis and other painful chronic conditions. Millions of people around the world are suffering & we need help. I would like to consider myself a warrior but if I have to be completely honest pretending to be ok & normal is more draining. As if all this wasn't enough, in the year 2000, I had a biopsy on my left breast, after noticing a lump that I had been ignoring for a few years because I was so young & didn't know better. I had a mammogram but the radiologist suggested an ultrasound because of dense breast tissues.

After having a biopsy the results came back benign. In 2010 I noticed another lump this time on my right breast. I immediately went for another diagnostic mammogram and

ultrasound then another biopsy. By the grace of God results were benign. And once again they didn't find anything malicious. My insurance has just kicked in & I plan to do a diagnostic mammogram very soon. This is all too much for one to go through but everyday I thank God for another day & for giving me strength. I never imagined that one day my ovaries, uterus, cervix & fallopian tubes would be removed.

When I learned that I was going to undergo a hysterectomy, I was very devastated, wondering how I was supposed to live with all the pain & the trauma but prayed & hoped that after years of multiple surgeries to get the fibroids and cysts removed, many trips to the ER due to raptured cysts, I would feel relief but that didn't happen. Instead of sitting around & feeling sorry for myself I want to do my best to help others. I also think it’s time to talk about the stigma surrounding these chronic conditions. Just because one looks fine physically doesn't mean they are lying about being in pain. I read so many stories of people that have either attempted or thought about committing suicide because they are tired of suffering and no one believing them. Having a smile on my face doesn't mean that I'm faking to be in pain, it only means that I am strong and refuse to allow a condition to take away my

smile. And this is real pain, it's not in our heads.

The most painful part of having this type of condition is that we have to pretend to be ok and fear being judged by society and sometimes even our loved ones. I often feel like a burden to my loved ones when I share about my pain so I refrain from talking about it & try to deal with it in silence. If you post pictures on social media smiling or somewhere on vacation people assume that you are ok & living a great life even though they don't know your story.

Then they say but she looks healthy. It is very painful to have to deal with this. Most people don't know the price we have to pay to pretend, to smile & try to be normal.

We NEED help, We NEED Interstitial Cystitis and other chronic conditions to get the same attention & publicity as cancer because they are debilitating & incapacitating. We want to have a voice, we need people in the public eye to get involved so that many others suffering like me can have a voice too. There is no money to support this cause. I know the pain of suffering in silence for many years & not getting a proper diagnosis. I know how that feels and I know there are many out there like me who probably have symptoms of either Interstitial Cystitis or endometriosis and doctors tell them there is nothing wrong with them or it’s just in

their head. I know that my story can help others to get an early diagnosis. I do believe that knowledge is power. We need to stand up for ourselves. I want to break the silence but I cant do it alone, it hurts, it's painful, it is a DISABILITY. We have to be our own advocates.

In my case it took over 10 years to get a proper diagnosis because I allowed doctors to suggest that my pain was not real. They always told me it was psychological. Since being diagnosed, I have had 4 cystoscopies & biopsies with bladder hydrodistention. I have also received multiple bladder instillation treatments which are administered through a catheter. When I did have insurance I had to go for treatments so many times & couldn't afford the core pays & my doctor’s office was not very cooperative which led to discouragement. It is also very easy to give up when you have been told your condition cant be cured especially when you cant even afford treatments that could possibly relief your pain. Other drugs I have been prescribed are Elmiron, Vesicare, Uribel & Myrbetriq. Elmiron is the only FDA approved drug for IC but it can take several years to feel any relief depending on the severity of the condition.

Thank you very much for taking time to read this long letter. I have attached pictures of my

bladder from my last surgery and some medical documents.

To learn more about IC please visit: https://www.ichelp.org/about-ic/what-isinterstitial-cystitis/ https://www.webmd.com/urinary-incontinenceoab/interstitial-cystitis#1 Sincerely, Kenzo

Stephanie's Story My name is Stephanie Schilz. I’m a 36 year old female with Interstitial Cystitis. In 1998 I was diagnosed with IC at the age of 17. From there I was started on the standard treatment of Elmiron, Atarax, and an antidepressant also getting hydrodistentions regularly. After about two years with no improvement, I moved to North Carolina and was referred to one of the best IC doctors in the country, Dr. Robert Evans of Wake Forrest Baptist Hospital. He tried me on DMSO, multiple medications, and daily instillations. After those treatments didn’t work I was entered into a few trials, none of which helped. Dr. Evans told me I was in end stage Interstitial Cystitis in 2011 and that my last hope before bladder removal was Cyclosporine.

After a few months we knew it wasn’t going to work.This whole time my main problem had been extreme pain. I did urinate over forty times a day, but I could handle that. It was the immense pain I couldn’t take, so it was time for bladder removal.

On December 23, 2011 at the age of 29, I had my bladder, uterus, urethra, and appendix removed and an Indiana Pouch created.

The surgery took 10 hours instead of the 7 expected. I ended up needing several blood transfusions. My scar starts from about 4 inches above my belly button to below my pubic bone. I have a stoma where my belly button was and I catheterize every 4-6 hours around the clock. I have to set a timer to remind me to empty my pouch on time or it could leak into my abdomen and cause an infection, which has happened a few times and sent me to the hospital.

There are positives and negatives to having my bladder removed. The positive is that I no longer urinate 40 plus times a day, and now that my urethra has been removed I can now have pain free sex. The negatives are that I am still in extreme pain all day every day and that it is difficult to urinate outside of your home. You have to use a container to empty your pouch into and you worry about overflowing. You have to fit all supplies into your purse and try to be discreet, but it’s difficult. The doctors don’t know if my pain is from nerve damage or if the IC has returned in my pouch. I have had my Indiana Pouch leak into my abdomen a few times and cause major infections. Each time I have been hospitalized for over a week. One year ago I was hospitalized for a month and had to have emergency surgery to clean out the

infection and fix a partial bowel obstruction caused by the leak. I was on bed rest for 3 months after the hospitalization and it took that long to close up my incision with a wound vac.

I’ve also had frequent pouch infections since getting my bladder removed. These are beyond painful. Overall I’m happy I had the surgery, but life isn’t as easy as they told me it would be. I wish the doctor would have prepared me for the possible complications and the possibility of extreme pain. These are all things to be considered when making the choice to have your bladder removed.

Tori's Story I am 19 years old and I’d say my fight with IC began in 2013. Like many suffering with IC, I still don’t know the cause. It started with a bang, I guess you'd say. It didn't start slowly or gradually build it was immediate crippling lower abdominal pain, cramping, along with vaginal burning. I was constantly in and out of the ER at the age of the 13 in excruciating pain. I actually started fainting and seizing because the pain was so intense ,so they sent me to Children's Hospital of Philadelphia. Every doctor looked at me as if was a crazy, possessed child. My mother was told it must be all mental because there was no sign of infection or obstruction in my stomach. They never even considered the bladder. They made me sit through endless interviews with psychiatrists and therapist to try and prove I had a mental disability. When that didn’t happen they diagnosed me with possible but “unseen” kidney stones, chronic constipation, and a dehydration problem.

For 2 years after I still had no true idea what was wrong with me. Constant stays in the hospital just being pumped full of pain meds and no diagnoses. It was the same feeling of a UTI but every time they cultured my urine it

never came back positive .I was finally diagnosed in December of 2015. Immediately I was started on weekly installations, also known as “rescues”. They contained heparin, lidocaine, and sometimes an antibiotic. IT’S meant to thicken my bladder wall to stop it from tearing. Even with the installations I was still in so much pain, and constantly suffering.

In August of 2016 I was in a horrific car accident. I shattered the levels C4, C5, and cracked C6 in my neck. I was in a coma for 10 days and woke up temporarily paralyzed and had to go to rehab to learn to walk and remember my life again. A few weeks into rehab my bladder started going out of control. I was peeing bright red blood and thick blood clots were blocking my urethra. I was constantly hooked up to a catheter foley because I was going through such bad retention. I had no infection. The wall of my bladder was just tearing away. Because of this horrible disease I am not able to keep a job. No one wants to hire someone who's in the bathroom 40+ times a day, constantly taking off because I'm in too much pain to even get out of bed, and always in the hospital. I have no income and I still have yet to be approved Social Security Disability. Every 3 months I get a hydrodistention and cystoscopy of the

bladder. I know for many this does not help and even hurts them, but for me it gives me about a month of some relief.

In February of 2017 I was in the hospital for 10 days, once again for extreme bladder pain/ spasms, but suddenly my stomach started to spasm and I began to convulse. Throwing up nonstop, and was on and off aspirating. I was officially diagnosed with Gastroparesis, IBS, diverticulitis, and chronic acid reflux with a hiatal hernia. Like many, my IC didnt come alone. I have so many auto immune diseases its crazy. Since that stay in the hospital I have also been diagnosed with Fibromyalgia, Endo, Pelvic Floor Dysfunction and I am currently being tested for Lupus. Just this May 7th, I started the process of the Interstim Implant.

The first surgery was absolutely terrible. I had wires and battery packs taped all over my back. This was a trial run so I had both sides in to test which side worked better. And for some reason for the first 3 days my right side hurt so bad I was completely incapable of moving. I was stuck on the couch for days just crying, pumping myself with pain medication. Finally went back to my doctor to figure out why I was in so much pain, she figured infection at the incision site. Well that wasn't the case.

Apparently my S1 joint in back had been

dislocated during the surgery. I have always had a problem with my joints and dislocations, but never in my back. She gave me 5 shots of I don’t know what and just slammed my side and popped it back in. Second surgery on May 21st was the permanent installment of the interstim in my left side. It’s meant to help frequency, spasms, and retention, also to help with your pelvic floor muscles. So far I do believe it is helping, but I now cannot sit down correctly or comfortably, and have a permanent square in my left butt cheek that is very visible if I'm not in baggy pants. This disease has done nothing but cripple me, and my entire lifestyle. I have extreme anxiety and depression. I sit home alone everyday in my apartment, doing nothing with my life because I'm constantly either throwing up, or my bladder has me stuck in bed.

Debbie's Story Let me start by saying that I probably have had IC for 40 years. I had UTI’s and yeast infections from all the antibiotics. I have been prescribed Cipro many times. I believe, I went in remission during the years that I had my daughters. I had no problems for a few years during that time. My 30’s were pretty good other than some frequency. In my 40’s I was treated for UTI’S with antibiotics and years later when I got my records to change doctors, all my test revealed I had no infection. I would continue with antibiotics and still having pain until I was diagnosed in 2008.I still remember the day the doctor came in and said to me, I think you have IC. I said what is that? After he explained I started crying, I said that is exactly what I have had all along, so why did I get so many antibiotics if they don’t help? He said, "well it is a new disease and we don’t know a lot about it."He said "we will start the IC diet and start you on Tovia", which was an overactive bladder medicine.

My IC came back with a vengeance in my 50’s. For the last ten years I have suffered. I had a few months without pain with a Cysto/ Hydrodistention. That procedure helped for

around 6 months. I was given Uribel and Pyridium. I also had a CT scan to check for kidney stones and it was clear. I had another Cysto/Hydrodistention a few years later but it gave me no relief and I was out of work a week with a terrible UTI. For the last 4 years I have been seeing a Urogynecologist. She has helped somewhat, She will not give me any pain medicine. She told me the first visit. So I asked her what do we do, as I am crying. She said the IC diet (which I have been doing 10 years.) She also gave me Hydroxzine at night, Uribel, Pyridium and Diazapam suppositories.She also introduced me to Bladder Q. It helped for a while and stopped. I have tried Cysto Renew and Cysto Protec. But after a while they stop working.

So today June 7, 2018, I am at work suffering. The only reason I can work is because I can go to the bathroom when I want.

They are very understanding. I have a sit down job but I have a pelvic floor pillow. Oh and by the way I am pretty sure I have PFD also, I will talk to my doctor next visit. I am very tight, swollen inside and have pain. Let’s talk about pain. Normal day is anywhere from a 6 to 10.

Usually, I may go to the bathroom 20 times. I suffer from frequency and retention. They can happen in the same hour. My biggest

​

complaint is burning. Every day I will burn at some point. My pee will sting most days and during a flare I literally grip the side of the toilet because it hurts so bad. I will also have chills with a bad flare. It seems that I don’t have too many good days anymore. I am trying some supplements Aloe Vera and Quercetin. I take Magnesium Malate and ​Calcium D. I am low in vitamin D and B12. So far I am okay with them.

My urine is usually cloudy and smells even though I drink spring water all day. Some waters can flare me. I am very sensitive to food and drink. I notice during the day I will pee 20 times but at night I have retention. I am blessed that I only get up once or twice at night.

I haven’t tried the expensive drugs or instillations. I have seen in many cases that it doesn’t work that well, and I am scared. The last time I had a catheter I thought I would pass out. I hope that in my future there is a cure or a new medicine that will help. The doctors don’t want to give us pain pills, so I worry about how I will manage if I get worse. Some days I am barely hanging on.

Jay's Story Young, fun, motivated, healthy and happy was my twenty year-old self. I had three jobs, I commuted by bus and I was finishing up becoming an educator. Life was amazing. In my spare time, I went shopping, spent time with my boyfriend and went clubbing or drinking every weekend with my friends. My favourite part of my life was how it was so fast paced. I had up to two jobs in one day and sometimes later that night, I was downtown at an outing or at a club. I was healthy, ate whatever I wanted including fast food, candy, dairy, meat and never had one problem. Just before I turned 21, I was a part time educator and at this point, I worked part time at a restaurant for additional income sometimes on my feet up to 15 hours a day. I started feeling a heavy sensation of pain in my bladder and had to keep urinating. I had been sexual active since I was 16 years old and up until I was 21, I had never had a UTI. I heard of them before so when I felt pain down there and frequency to pee, I decided to visit the walk-in clinic. I assumed it was no big deal and figured I would take antibiotics for my infection to dissipate. My life ended for me this day.

My urine was sent out for culture analysis and the results indicated I had a UTI. I was given antibiotics and took it. After I finished the course of medication, I was still feeling pain and frequency. I went back and left another urine sample but I had another UTI. I took another course of antibiotics and this cycle lasted 8 months. The UTI would not respond to any antibiotics. I could not work 15 hour days any longer, I was not having any intercourse because I could barely walk or move due to the pressure. My perfect life was slipping away at only 21. My mom was informed about the 8 month antibiotic cycle - she saw me consistently crying and on the toilet. She came with me to the doctor and demanded we see the urologist because the doctor’s method was not working.

I saw the urologist and he immediately said I needed a cystoscopy. I was so scared but I did it. He told me he saw cracks in my bladder lining due to the chronic infections and in order to heal, I would need to be on a low dose of antibiotics for a long time. So, I was on one Macrobid antibiotic for 8 months or so. I could still not walk - the heaviness sensation was so excruciating. I could not have sex anymore and I could not hold my urine longer than 5 minutes.

Not only was I always needing to pee, I always had urinary retention. I had to always leave the tap on to pee or stand in the shower to allow the urine to flow out. I started losing my hair on the Macrobid - I was miserable, couldn’t do anything and couldn’t go anywhere. I went back to the urologist and he told me he had never heard of Macrobid causing any issues so he didn’t know what else to tell me. I decided to go to a naturopathic doctor that my hair dresser recommended to me. I was affiliated with one and they slowly transitioned me to start coming off the Macrobid. They incorporated teas and tinctures to flush out the bacteria in order to heal my bladder lining. It cost a fortune - probably to the tune of 400 dollars a week for a year. My mom stood by me the whole way to support my healing. Guess what? I was symptom free until I was 23. I spent a year or so enjoying my life again minus having sex because I was single at this point. I got hired by a daycare l and I was an educator - my life was picking up again!

Right before I turned 23, I met the love of my life but I was so scared to date him because I had a phobia he would want to have sex with me. I was terrified if anything entered down there, I could get another UTI. This man and I dated 3 months casually until he officially asked

me to be his partner. I told him yes, but I needed him to understand I have to take this slow. He understood. Just shortly after I turned 24, I was hired by a school!!! I was finally teaching. I was sitting in my orientation session and that’s when my life fell apart. I had to suddenly pee so bad I could barely make it to the washroom - the pressure was intense. I went to urinate and I couldn’t pee; I couldn’t pee for 5 hours. I was dying of pain had to leave right away from my orientation. I got home and sat in the tub of water for 5 hours; slowly drop by drop the urine came out. It was back, my bladder issues were back. From that day on my story really began.

I went back to the urologist and he did another cystoscopy. He saw nothing there and told me I was fine. He even said: “I don’t need to see you any longer.” I told him – “you don’t understand, I am peeing every 15 minutes. I have immense pain, can’t work, and can’t leave my house.”He told me – “some people pee a lot I can’t help you.” I was urinating up to 50 times a day. I ended up getting a referral to a new urologist and she told me that I had a condition called interstitial cystitis - that’s when you have frequency and urgency with urination.

She also mentioned that I could also have pelvic pain and pain during sex. I said: “why

didn't the cystoscopy show that?” The new urologist said: “it’s not always seen threw the camera scope; sometimes symptoms are enough to tell us.” She told me I had two options: either I start taking Elmiron medication or do bladder installations. I was devastated at the thought of any catheter going inside me again. I had a lot of pain from the cystoscopy so the thought of another UTI from the catheter was a nightmare. The urologist also mentioned that a lot of people lose their hair while taking Elmiron. I felt hopeless as I have always had stunning thick hair so this news destroyed me. I told my mom I wanted to go home now - I couldn’t handle it anymore. Unfortunately, what ended up happening was that I had started to develop a lot of anxiety around my bladder issues. I needed my mother to come to all appointments, I needed to always be in situations I felt comfortable in because I would worry people would comment on my bathroom usage.

Around the age of 25, I started soaking in that I had IC and it wasn’t going anywhere anytime soon. I did my own research and I joined the IC Facebook group - Healing Interstitial Cystitis Naturally. I changed my diet completely I went vegan, gluten-free and no sugar. I started to meal prep everything that

entered my mouth and eliminated all the crap I use to eat. In making this change, I lost 15 pounds which now leaves me at 103 pounds. I look thin, frail and aged but it helped so I accepted the woman in the mirror. The pressure in my pelvis went down significantly. I came across a naturopath who had IC herself who went into remission. I reached out to her.

She recommended a lot of supplements and to be honest looking back, it was a waste of time.

I spent from 25-27 under her care and never got better and never went into remission. I was spending so much money on supplements and it was doing nothing. I also tried pelvic floor physiotherapy two summers in a row and it would flare me up so bad that I experienced more UTI like symptoms.

My life from 24-27 has been filled with severe bouts of depression, inability to fall asleep on my own due to peeing so much at night. My anxiety has taken over my life and I don’t even know who I am anymore when I look in the mirror. I was/am on Amitriptyline, Hydroxzine, and Prydium - still on and off to this date. I frequently need to speak to a therapist and in 2017 I had a breakdown due to some toxic people in my life. I just couldn’t continue any longer that I took a leave of absence from work. This was the first time in

my life that my anxiety, depression and IC took me out of my job. I spent 6 years coping and now I was down! I was sleeping all day for 4 days straight. I was sad, miserable and I prayed that when I feel asleep, I wouldn’t wake up. I was really at the lowest point I had ever been. I felt horrible that I lived with my boyfriend - I was a complete mess, a burden, I had 0 to offer and I didn’t see any light at the end of the tunnel. I managed to come out of this slowly and returned back to work, I wasn’t better with my bladder but my mental state was so I returned. I just kept peeing and working, peeing and working, coming home putting on the hot pillow on my pelvis, taking Amitriptyline and going to bed. I wasn’t a good partner, I wasn’t a good daughter, I wasn’t a good coworker and I wasn’t a good friend. This is because I was so sick and miserable that all I saw was darkness. To be honest that’s all I still see.

I got sick again this year in April. I was in the ER twice in a week and again my parents had to be there to see yet again their 27 year-old fall apart and be out of work. I wondered every morning, why did I wake up today - I wish I didn’t. I look at my fiancé now (can you believe this man proposed and stands by me during this darkness?) and I don’t understand what he

sees in me when all I see, hear, and breathe is interstitial cystitis - it’s on my mind 24/7. Just writing this article I have peed about 3 times and it drives me insane. In 7 years there has not been one day that I haven’t cried, or avoided looking in a mirror because I don’t know the person I am. I am still living in the past remembering the person I was and longing for her to come back. I hope I can heal enough that one day I can be my old self again but as for now, I am 27 and I am employed as an educator just getting by daily.

I have been doing tests with a functional doctor whom I have never tried and I am hoping I get some answers digging deeper naturally. To heal, you have to get to the root of the wound. This is what I am trying to do - I still battle every day, I still wish I was someone else but I really hope in time I will learn to love myself for whom I have become and learn to accept some things I cannot change. In the mean time, I have to just live with and work around it. If I could give any advice to anyone, even though I am not healed, it is that the journey is bumpy, it’s not smooth and that’s ok but make sure to surround yourself with people who don’t make you feel worse than you already feel. If you are like me and worry and fret over work, don’t. Work will wait. Be kind

kind to yourself and even though it seems impossible, try your best to love back those around you who love you to death. We may not understand why they love us but that’s because we are not always ourselves with this condition.

My favourite quote that I say to my fiancé is “Love me until I am me again” and to anyone suffering, you will be you again at some point.

Just hold out and wish that you will wake up every morning because we deserve to live just as much as anyone else.

Good luck to all you beautiful individuals out there and keep fighting the battle.

Jay Francesca

Doris' Story I was first diagnosed with Interstitial Cystitis at the age of 58. I had been under a lot of stress for a couple of years or more and I think this is what caused mine. Anyways my urologist did surgery on me to get a biopsy and look in my bladder and when he spoke to me afterwards he said "Doctors tell people all the time they have IC without even looking in their bladder." I have looked in yours and I am 110% sure that you have IC. First time I ever heard the name of this awful disease. After over 2 years of going to him and trying different things, stretching my bladder, instills and etc. he told me there was nothing else he could do for me so there was no reason to continue seeing him. Well, I went home and just thought what in the world do I do now. I was peeing 25 or more times in the day and 12-16 times at night. I was in pain 24/7. No relief. After losing 32 pounds my brother saw me and was shocked at how bad I was looking. (Pain can do that to you). He is really intelligent when it comes to the human body and loves to read up on those type of things. He read books about IC and anything else he could find to read up on this disease. We tried many different things

out there but none of them worked. Then one day after talking with a friend of ours that is a herbalist he told us about a guy that he knew that was healed of this disease. We got the information about this guy and made a hour trip to meet with him. He told me that he was diagnosed when he was in his 20's. He now is in his late 50's. He said his doctor looked in his bladder and told him he had IC. He said he was treated for 7 years with no answers. He quit going to the dr. and started searching on his own. He took classes on going natural with some help from a naturalist friend of his. He told me this is what he did and after 2 1/2 years his bladder was healed. He started out every morning drinking black cherry juice, apple cider vineger, aloe vera gel and pure honey. Also magnesium, zinc and B6 daily. Aloe vera capsules too. For the first 30 days he had no meat, caffeine, sugar, coffee. He drank only Distilled water. He ate vegatables, fruits of all kinds, nuts, eggs, brown rice. After 30 days he stopped the distilled water. Added foods a little at a time. Trial and error. So, I came home and got started on this. I was feeling 70% better after 3 months. I've been doing this now for 1 1/2 years and I only have pain now when I have to pee. After I pee I have no pain till I have to pee again. I now pee about 10 times in the day

and 3-5 times at night. My bladder is not healed but I am sooooo much better than I was. I can now eat just about anything. I drink only water and goat milk. Before trying this my vagina, uretha and bladder killed me daily. I have no pain in my vagina or uretha now. And like I said I do have pain when I have to pee.

This man says he eats what he wants (all in moderation) and he has had no pain now for around 30 years. I pray we can find out what causes this disease and that there will be a cure for it. I am so thankful that I found this man and this is working for me, Like I said though, I am not healed YET.....Thanks for listening.

Supplements First of all I'd like to mention the use of the supplements suggested in this book is at your own risk and you should always speak to your physician before trying something new.

There isn't one single IC patient that I know that isn't always looking for that one miracle product that will cure us. The reason for this is that traditional medicine is just not helping us.

We vigorously search the Internet daily looking for that one product that will end our pain. I know this to be true, because I am one of those people. The way I think of things is like this, " what did the cavemen do? They didn't have pharmacies. They didn't have a local doctor to treat them, and they certainly didn't have the Internet! They made their own medicine from what the earth provided them. I tend to use this thinking process when searching or making new concoctions for my clients.

Although there are times when I do need to turn to modern medicine for help, I try to stay as natural as possible, looking up natural alternatives . I hate to have to say it, but modern medicine is full of chemicals! Why would I or anyone else want to put a chemical

into our bodies if we can't even read or pronounce the ingredients? I am on the web every single day looking for natural alternatives.

Like I mentioned in my first book, instead of taking Elmiron which is $300 WITH insurance , I take Slippery Elm which is an ingredient in Elmiron.

As I mentioned earlier in the beginning of the book, I have been taking FOOD GRADE hydrogen peroxide. My reasoning for this is because bacteria cannot live in an oxygenated environment. It also gives me a little extra energy , which we all could use. You must be very careful when choosing your hydrogen peroxide. The over the counter product you see in pharmacies is not FOOD GRADE. You must purchase from a natural health food store. I add 5 DROPS to a full glass of filtered water. There are so many uses for Food Grade Hydrogen peroxide . I even made a facial toner with it that has kept my skin perfectly clear. Remember, bacteria cannot survive in an oxygenated environment. You can also make a household cleanser with it it by adding it to a spray bottle with water. Your home will be bacteria free! I personally have recommended taking FOOD GRADE hydrogen peroxide orally to my clients that have Cancer. I'm not saying it will replace chemo, but it is definitely worth trying.

" The hydrogen peroxide available in drugstores can be used for some topical applications, but it contains stabilizers such as phenol and acetanilide. This type of hydrogen peroxide should not be taken orally, says Dr. David D. Williams in "The Many Benefits of Hydrogen Peroxide." Only food-grade hydrogen peroxide should be used internally.

Food-grade hydrogen peroxide comes in a 35 percent concentration -- the rest is water -- and it must be diluted to a 3 percent concentration.

To dilute, combine one ounce of hydrogen peroxide with 11 ounces of distilled water. The U.S. Food and Drug Administration warns that consuming 35 percent food-grade hydrogen peroxide may cause serious health consequences, and even death.

Food-grade hydrogen peroxide may help kill cancer cells, says R. Webster Kehr, a researcher for the Independent Cancer Research Foundation. Cancer cells are thought to spread when little oxygen is available, while increased exposure to oxygen causes the spread of cancer cells to slow, and sufficient oxygen can kill cancer cells. Researchers believe that cancer cells cannot break down the oxygen atoms in hydrogen peroxide, so those oxygen atoms can effectively kill cancer cells. Never self-treat a cancer condition with

hydrogen peroxide. Speak to your oncologist and physician before trying any form of alternative treatment."

projectavalon.com

Livestrong.com

One of my favorite supplements to take is MSM (methylsulfonylmethane). What is MSM (methylsulfonylmethane)?

Methylsulfonylmethane, also known as the oxidized form of dimethyl sulfoxide (DMSO).

Remember we talked about DMSO in the first book? It is a miracle product in itself.

MSM helps to reduce inflammation , remove toxins from the body and promote collagen regeneration. In order to repair our bladder lining, we need collagen! Another added bonus of taking MSM is it helps to keep our skin plump! I am 46 years old, and often get asked why I have no wrinkles. If you nourish your body with what it needs on the inside , it will yield wonderful results in the outside. I also recommend MSM to my Endermologie clients because it will help flush toxins out of the fat pores. Always start out at a very low dose when taking MSM , as the die off from the toxins can cause nausea and headache.

"Benefits of MSM: 1. Treats Osteoarthritis and Joint Pain 2. Improves Digestive Problems Like Leaky Gut Syndrome

3. Repairs Skin and Treats Skin Problems Including Rosacea, Allergies, Wounds 4. Lowers Muscle Pain, Muscle Spasms and Even Muscle Damage 5. Restores Hair Growth 6. Helps the Body Adapt to Stress Some of the most common uses for MSM include treating: chronic joint pain (osteoarthritis, joint inflammation, rheumatoid arthritis) leaky gut syndrome and autoimmune disorders osteoporosis and susceptibility to bone fractures bursitis, tendonitis, the development of scar tissue and other musculoskeletal pains allergies and asthma yeast infections muscle cramps constipation, ulcers, upset stomach, indigestion PMS symptoms (cramps, headaches, water retention, indigestion) stretch marks hair loss skin problems including wrinkles, sun burns

(it offers some protection against UV light/wind burn), wounds, cuts, skin abrasions eye inflammation poor circulation high blood pressure fatigue oral infections, toothaches, gum disease/ periodontal disease" draxe.com Interstitial Cystitis "Researchers suggest that MSM holds promise as a treatment for interstitial cystitis patients, as well as those suffering from painful bladder (urethral) syndrome and note that it is has virtually no side effects. " www.fortitechpremixes.com It has been found that MSM heals the injured membrane wall within the bladder, naturally! So why not give it a try? I highly suggest adding this to your regimen! MSM can be found in capsule, granule, or liquid form at most local health food stores.

emeraldsupplements.com

Bee Propylis I am currently taking bee Propylis three times daily, as you would Elmiron. Since my last surgery, June 19, my pain has been at the most a level three. I found an interesting thread online while searching for criteria for this section. This persons response is a great explanation on bee Propylis. ( I want to give credit where it is due) Christine says...

September 27, 2012 at 5:08 AM "Bee Propolis worked for me when I tried all of the above and nothing worked. The bees produce propolis from their bodies and spread it on the opening to their hives. It prevents all bacteria from getting into the hive. It makes the hive remain sterile at all times. It’s a natural substance and you can get it in capsule form. It is nature’s natural antibiotic and works as well as Bactrim. People who are allergic to honey or bee stings probably should not take it. It is a miracle cure for me. A lady friend of mind was able to avoid kidney removal when she was slated to have her last kidney removed due to constant infections. She had already lost her left kidney. The propolis cured her bladder, kidney and uti infections almost over night.

She has to take propolis every day now, or else her infection comes back – but its better than losing her only surviving kidney. Even antibiotics would no longer help her. But for most people, the bee propolis would only be used if nothing else worked and they probably would only need to do it for a few days or a week or so. It was a god-send for me, because I was urinating blood and had sediment in my urine. Sometimes the urine was copper colored and the pain was unbearable. The urine smelled awful and I had tried uva ursi, buchu, cornsilk, oil of oregano, garlic capsules, cranberry juice, cranberry capsules, tons of water, alfalfa-max, marshmallow, slippery elm, tumeric, cinnamon, fungreek, echinacea and golden seal, chickweed, goldenseal, echinacea, beet root, d-mannose, aloe vera, fennel seed, burdock, nettle, gravel root, and the list goes on. I’ve been literally fighting this thing ever since I went through menopause and had my legs amputated. Nothing worked (some for a day or two) – but it always came back with a vengeance. I got my life back with bee propolis.

I never leave home without it. Please note that slippery elm, marshmallow and fenugreek are mucilage that produce mucous that soothes the lining of your urinary tract and it really helps the pain, until the antiobiotic affect of

other herbs kick in. Natural natibiotics beside bee propolis are – cinnamon, tumeric (found in mustard), oil of oregano, licorice root, garlic, burdock root, etc."

Of course if you can find a local beekeeper that has a supply of Propylis on hand , that would be your first choice. I ordered mine off eBay from the closest location to me which was LA. I really feel it is helping me , as my pain has tremendously lowered since taking it.

"According to Medline Plus, propolis has shown promise in treating urinary tract infections ,giardia infections and could be an effective treatment for vaginal inflammation, however more research needs to be done.

Medline Plus reports that studies on humans, despite being poorly designed, have shown propolis to be effective in treating the lesions caused by the herpes simplex virus. Better designed studies on humans are necessary before Propolis can be considered an effective treatment for herpes. Some evidence exists that propolis can effectively fight the virus that causes the common cold, but more research is necessary."

Livestrong.com

P.S. my herpes tests were NEGATIVE

After my last surgery I vowed to not drink coffee anymore. I wanted to do the best I could at making sure my new bladder was treated like royalty. The headaches were HORRIBLE! I searched around the tea isles at every store I went to until I stumbled across one that had bladder friendly ingredients. MOTHERS MILK. Every single ingredient in Mothers Milk tea, yes the tea that's suppose to promote lactation, is bladder friendly! It has been very soothing to my bladder.

Mothers Milk Tea- I have been drinking this since my surgery almost two weeks ago. I add 1 scoop of Clear Tract to my tea!

Bitter Fennel- beneficial when treating a UTI Anise- helps with viral, fungal and bacteria Infections Coriander-flushes put infection causing bacteria Fenugreek-effective against UTI's Blessed Thistle herb-great for overactive bladder, anti inflammatory

Spearmint leaf- soothes the bladder Lemongrass-fights bacteria that antibiotics cannot such as e- coli Lemon verbena - urinary antiseptic Marshmallow root-helps to flush kidneys and bladder

Buchu Buchu is my newest discovery. I have been taking it daily in the days following my surgery as I tend to have retention after surgery. My burning has subsided greatly.

"Buchu is a urinary antiseptic and diuretic that can also be taken after the acute phase of an infection has passed in order to restore damaged mucosa. Buchu works efficiently and effectively as a urinary disinfectant. The volatile oils stimulate urination and renders the urine slightly antiseptic. Bachu is great for use with a bladder infection that is accompanied by a burning sensation, and also if there is acidic urine with a constant desire to urinate with no relief from doing so."

bodysoulmind.net

swansonvitamins.com

Oska Pulse

oskawellness.com

Something else I've been using during my recovery from surgery is the Oska Pulse . The Oska Pulse is drug free pain relief! This device uses pulsed electromagnetic fields to reduce inflammation, increase circulation and improve mobility. Now since I'm certified in this field, I had no doubt that this device would work. It comes with a stretchy band so you can attach it anywhere on your body. But honestly, I just stuck it under my panties ( over my bladder area) and let it do its job.

Use code FAIRY50 for $50 off

As I mentioned earlier, something I like to drink is CBD water. It's so simple to make. No, it doesn't get you high! Basically all you need is some good CBD bud, and a really good glass tea diffuser bottle . The bottle I use is made by Steep Fit. It has a separate compartment that screws off and you but the herbs inside. I like to make it the old fashioned way like my Mom did when I was little. She always made sun tea!

I fill the compartment with CBD bud, fill the bottle with my alkalined water from my DYLN bottle, and set it out in the sun all day. I'm sure there are other ways to do this, but this is how I do it. I bring it in at the end of the day, let it cool, and drink it. No, it doesn't smell like weed, and no, it doesn't taste horrible. I drink it just like it is. I don't add anything to sweeten it.

You could also use a big jar and use a tea diffuser to make a larger batch. My bladder LOVES it!

Amazon.com

Dear Diary, I am a member of several online support groups, as well as my own group. There isn't one day that goes by that I don't read about someone being in terrible pain. In my first book I did a discussion asking, "What does an IC Flare Feel Like." Although we got some great explanations, it's the candid posts that clearly show the pain and desperation that catch my attention. I decided to " collect " these posts so readers could "feel" sort of speak, what we feel.

"I hate the pain this causes. Currently in hospital 3rd night after being admitted due to retention (1000ml). Now unable to void at all and been told to train my bladder and self cath 4 times a day but hold it for 4 hours. I’m struggling big time with the pain which makes me not want to drink. Held what turned out to be only 60ml for 3 and a half hours. Couldn't take the pain anymore. It was making me shake and my Apple Watch said my pulse went up to 143. Sorry just wanted to vent. Apparently I need to train my bladder, and after a couple times of holding it in ,the pain/ spasms will decrease as the bladder is only a muscle."

"So much pain. Hot pokers and throbbing in bladder. Seeing IC doc on July 5th. This disease has progressed over the years. So scary."

"I need help finding an OBGYN in the Memphis area that understands IC because I just wasted $65 for my OBGYN to give me lidocaine to rub on my vagina, and low dose clozepam. I am up to my wits end. I need vaginal Valium — looking for recommendations."

"I'm so angry and I hate life *STROMPING FEET* I HATE this isolating, nasty, bloody disease. I went from what started off as a flare, the night before my exam. Now I've got high volume blood in my urine, a really bad feminine infection,and severe pain .I've spent weeks on end in a flare with my other condition. I just keep going through thoughts of not wanting to be here. I'm so sick of having to fight for any form of help ."

"I don't think I have ever been on here before. I did write a lot in the post about, vaginismus. I was discouraged by my Urologist from going on these groups. Yet the 3-4 times I did, in the night, either I helped

someone or they helped me. I never saw anyone that was actually in control or helping. I hope you can help in some way. I am told I am one of the worst cases, but I have found others the very few times I tried a group. I will come back on more regular. I have several diseases and all disabling. But I have been disabled already from my spine, for almost 35 yrs.

Doctors don't know what IC is, and they see the rest and they don't want me as a patient. I do have quite a bit of medical knowledge and they do not like that. If I say nothing, I find them lying so much and normally other patients wouldn't catch their lies. I am not going to a doctor who is lying about very serious things."

"Why Does my Indiana Pouch keep getting infected? I have enough pain without this crazy pain on top of it! I’m doing everything right, I just don’t get it? I supposedly have one of the best IC doctors out there and he doesn’t understand why I’m having so many problems this far post op. I just want the pain to stop!"

"Hi ladies. Woken by my bladder this morning at 4 and have been slowly dying since.

I’m still in a lot of pain and have had blood physically showing again in my urine tonight.

My urology nurse told me on Tuesday that if it happened again to go to my GP and get him to contact my urologist to bring my surgery forward. It’s hopefully just bladder lining that is trying to pass (my urethra regularly becomes painful and spasms due to this), but this time it feels like something is stuck. I’m drinking plenty of water to flush it through" "New here... not sure where to start... Today I went in for a follow up at the Gyn from my ER visit last week because I thought I might have a UTI. All was negative for UTI. My symptoms are lower pelvic pain (feels like menstrual cramps at times but worse!) it’s been going on for a few months, thought it would go away but it’s actually getting worse. (I don’t have menstrual cycle as I’ve had a hysterectomy). The pain is worse if I don’t have an empty bladder...& I’ll wake up at night 2-4 times a night now from severe lower abdominal pain, it feels like I haven’t peed in hours when really it’s only been a few. No pain with peeing like a úti just the abdominal pain. Going Pee helps some but not always. Sometimes I feel it in the day but not always. Was told today it might be Painful Bladder Syndrome... first time I’ve heard of it.

Going to do research tonight. Going for a pelvic ultrasound soon. Requested a hormone imbalance test but he didn’t think it necessary.

What are tests that y’all had done to diagnose ? What treatments have worked better for you? Any advice! Does this sound like Painful Bowel Syndrome? Just feel lost and not sure what to expect or ask."

"Okay guys, as all of you know I live in Las Vegas, and trying to find any type of doctor that even knows what IC is , is nearly impossible.

So I need your guys help. What would be my best place to put my money towards? They all have the same pay structure except one that was a chiropractor and said 10k for one year.

What will help me best? A holistic doctor, naturopath, or functional doctor? I need help because this has been going on for four years and I’ve lost everything from it and I know I need help before I literally take my life. I know it’s illegal to kill ones self but I truly believe god will forgive me because I can’t handle the pain anymore. I would rather be on the other side of life. So therefore I’m giving this one more shot.

So what do you guys recommend that will help me the best. Trust me when I say they all have the same spills, package, deal, prices...I mean it’s ridiculous."

" HELP. Tuesday I had a vaginal hysterectomy and some prolapses fixed. I'm allergic to latex silicone and plastics. After surgery they took out the catheter an hour or two after waking up (1pm). I went straight into retention. By 10pm they tried iv dilaudid and my muscles relaxed enough for me to pee.The pill form does not relax my muscles enough to pee and gives me an aweful head high.

Ibuprofen throws me into retention and they were giving me a very strong anti inflammatory.

I was able to stop that and went from retention to peeing a trickle every 15 minutes. They wouldn't stop hounding me about the anti inflammatory, so to prove it swells my lady parts closed and cause retention, I tried it again.I showed them and after a while they took it off my list of meds. I came to the hospital on no meds, today I was on 13 meds.

Still the only thing going that allows me to pee is IV dilaudid. Yesterday they took me off the IV dilaudid. I got the doctor to take away most of the 13 meds but was just informed they will not give me any more dilaudid by IV. I am scared to death they're going to rupture my bladder. I am scared to death I will die by their hands because they don't want to listen to me. I just

wanted to be on the IV dilaudid long enough for my bladder to chill out so I can pee. Probably 2-3 days. What do I do??? I have 6 kids I don't want to die from a ruptured bladder. What do I do and how do I do it? I've also been refused vaginal valuim. I'm at a loss, please help me."

"I thought I could be a normal human last night, drank wine and had sex after no sex for 5 months. The world of pain I'm in today is just cruel. I hate this disease. My life is literally over."

"Medical doctors have learned how to transplant faces and uteruses in the last 10 years. WHY haven’t you taken the time to learn how to transplant a bladder with ease? Why weren’t you advocating for US with IC?" In response to the above quote, " my exact feelings. It is just not profitable I believe. They can cut our bladder out with ease and hang a bag on us and expect us to act like they just gave us a new Coach bag. They take our dignity. Give us more infections, supplies, meds, doc appts, fear and pain. But we get to sleep thru the night now. And we should be thankful for their new solution. No thank you.

They can do more. I feel deeply in my heart

they can. That is why I refuse to give them another dime until I here that they are making progress. Real progress. I will stick to the natural remedies for relief until healing comes." " If doctors can put a balloon is someone's stomach to keep them from overeating, why can't they put a balloon inside our bladder? Not only would the balloon keep our bladders from shrinking, but it could also act as a temporary lining, protecting our nerves! COME ON! It's not rocket science here! Doctors will gladly take your money and give you breast and butt implants! They will gladly take your money for liposuction! But do a surgery that will actually improve someone's life? Apparently that's PRICELESS!" "I need to be whiney, can I whine for a second? I just had my 4th bladder instill, of my 4th round. They don’t help. The dr wants to do them anyway. It hurts, it burns, it causes me to flare, so I’ve been in a month long flare, and I’m tired and it sucks? Anyone know of anything to help with the burning pain? I’ve been sitting on a heating pad, and took pain meds. What else can I do?Thanks for being my shoulder to whine on!"

"When they say this disease doesn’t come alone they aren’t lying. Just reached the next phase of gastroparesis, stomach no longer digests food, and acid reflux has gotten so severe. Just had this scope put in today, so they can watch how my stomach works/doesn’t work. I hate all of this."

" Hola- can anyone tell me if I can take more than three peridium a day? I’m still peeing blood and in a massive flare since my hydrodistension on the 21st of June. But, today I’m trying to drive to my home town and I’m flipping dying! I’ve nature peed on the side of the road more times in the last 10 hours of driving than I have my entire life! fml- any suggestions? I literally can NoT compartmentalize this pain and I’m stopping every half hour to hour."

"So yesterday I went to my GP as I’m in a lot of pain yet again, she did a urine same and she said there was blood white blood cells and lots of protein but no infection however she is still sending it off to be sure, I can’t stop itching I’m so sore and I’ve been bleeding since the 3rd June non stop! I’ve now had a depo injection to see if this stops it because I’ve already had two courses of tremsemic acid sorry for the gross detail but I’ve had bad discharge that’s had blood in it. Can’t stop the feeling of urgency but when I sit down to go finding it hard to actually get the urine out... I really want to avoid a hospital visit but it’s getting to much to cope with. I’m taking Oramorph for the pain, I’ve tried thrush cream incase I’ve got thrush and using sudocream for

the soreness but it’s just not easing!!"

"I feel like I'm at my breaking point. I saw a highly recommended specialist for my IC as it's so severe most doctors won't take me on as a patient. I had a cystocopy with hydrodistention, bladder biopsy, trigger point injections, and steroid injections all in the same surgery/ procedure. The steroid injections were for bladder tears that they found throughout my entire bladder. I looked it up and saw that it was considered Hunner's Lesions, but my doctor swears I don't have them. Ever since the surgery and procedures, my life has been a living hell. I couldn't sit for a week because something went wrong with the trigger point injections. My bladder is the worst it's ever been. I have constant pain and burning in my bladder and urethra and now cannot empty my bladder in a single sitting (I was able to at one point). On top of that, urine slowly drops into my urethra and then leaks. I've never had urine leakage in my life. I've never even had anything close. I saw my doctor for a follow up as was instructed and informed her of all of this even though I had already been in contact several times due to what seemed like surgery complications. She wasn't concerned, but had me get a bladder instillation even though she

knows they do not help me at all. Her nurse, who seems to take more concern over my case than my doctor, couldn't get my bladder to empty the medication from the instillation. We eventually got some out, but I had to forcefully urinate the rest out myself. I've had 13 instillations now and this is the only time they couldn't get it out and I ended up urinating blood multiple times after (first time for that too). Medication, physical therapy, steroids, injections, instillations, etc. are not working at all and I'm getting worse every single day. My doctor told me to just keep doing what I'm doing. Does anyone have any actual advice because she's done nothing to help me and I can't afford a trip to the ER again."

IC, The Suicide Illness? " a lot of the time, we women with IC in our support groups, do you not seem to speak about the isolation, and loneliness that this disease thrust upon us. I was diagnosed with 9 Hunner's ulcers when I was 22 years old they didn't know what to call it back then so my urologist called them polyps and said that they could be cauterized and that I should feel a lot better once that's done. He never mentioned Interstitial cystitis, he never mentioned that I should change my diet. Yes I had been sexually abused, but now I was also about to go down a path of many years suffering with IC never knowing that I should have changed my diet!

Being told, " you just have a bladder infection.

Let me give you these antibiotics." Then the culture comes back negative, and I started antibiotics for nothing. The depression that I was diagnosed with has now turned into anxiety and a new label bipolar has been added. I can't help but wonder have I started going crazy because my doctors are not able to help me with this invisible illness? I think so! I was not diagnosed, so I was 44 years old, that's 22 years later. That's unacceptable! More should be done. We demand more from this

United States of America. How is a woman or a young girl to feel when they look up Interstitial cystitis and it's dubbed the suicide illness!

What hope is there for them? We are better than that as a country. We we all deserve good health care at a reasonable price."

The following section consists of IC suicide stories I found online. They are REAL people who have committed suicide because of Interstitial Cystitis. I'm afraid if we don't spread awareness about this horrible disease we will lose so many more. Interstitial Cystitis is real.

It's NOT in our heads! The pain we feel is REAL!

I take absolutely no credit for the following section, other than copying and pasting. I have given credit to the writers . I have changed nothing . This is real life! This is IC life!

Not Just a Bladder Infection

by BARRY YEOMAN on JUNE 1, 2003 For years, physicians thought women suffering from interstitial cystitis were hysterical. Now there’s professional recognition —and hope.

Originally published in Self.

ON MARCH 7, 2002, PAUL MCLEAN returned to his Arlington, Virginia, home from his office at the U.S. Department of Defense and found his wife had committed suicide by shooting herself. “Diane decided she’d had enough,” says McLean. An adventuresome woman who had lived all over the world, she could no longer work in her garden, go shopping with her daughter or do any of the things that used to bring her joy. For 24 years, she’d battled interstitial cystitis (IC), an incurable, often debilitating and extremely painful bladder disease. And though she took prescription narcotics to dampen her nearconstant agony, the pills did little to make living easier. “Diane said it was like someone twisting a knife inside her,” says McLean. Ultimately, Diane chose to surrender, and, says McLean, “I lost my best friend.”

Taking one’s own life is, of course, the most extreme reaction to an incapacitating illness,

but for sufferers of IC (there are about 1 million in the United States, the vast majority of them women) it may seem like there’s no other way out. Indeed, many IC patients do have suicidal thoughts, says urologist Philip Hanno, M.D., of the Hospital of the University of Pennsylvania in Philadelphia. There’s no understanding what IC feels like unless you have it, but imagine the worst urinary tract infection you’ve ever had and multiply the pain, burning and constant bladder pressure by 100. That’s not all: Women with IC also have the urge to urinate between 30 and 60 times a day. Despite the feeling of having to go, it may be difficult to actually do so because the pelvic muscles may tense or the bladder might be nearly empty from so many trips, says Terry-Jo Myers, 40, a professional golfer from Fort Myers, Florida, who was diagnosed 20 years ago. “But urinating—even a drop—was the only time I got real relief from the pain.” At least courses on the LPGA tour have portable toilets throughout, making frequent bathroom stops easy. Other women with IC don’t even enjoy that tiny salvation. “When I’d go shopping, I would have to run through parking lots just to get to the bathroom,” says Iliana Brockman, 41, of Tampa, Florida, who has battled IC since 1999.

IT’S ONE THING TO HAVE A HORRIFICALLY PAINFUL disease, but it’s quite another to have a horrifically painful disease that doctors believe is feminine hysteria. And until very recently, that’s exactly what women with IC had to contend with. “We used to think it was all in their heads,” says David Kaufman, M.D., assistant professor of clinical urology at Columbia University College of Physicians and Surgeons in New York City. The physicians who didn’t completely dismiss their patients’ concerns often misdiagnosed them with endometriosis or UTIs. What’s more, until the 1980s, IC was predominantly viewed as a rare, postmenopausal disease. As it turns out, a quarter of those with the problem are younger than 30.

It’s taken a dedicated, two-decade grassroots awareness campaign to convince doctors that IC is a legitimate medical condition, one characterized by an extreme oversensitivity of the bladder, likely caused by damage to the organ’s inner surface lining. Dr. Kaufman compares this lining to a Gore-Tex layer. “If there are defects in that layer, urine seeps through and irritates the nerve endings, causing inflammation and intense pain,” he explains. Theories abound as to how the breaks originate, but no one really knows. At

various times, doctors have blamed everything from genes to infections to antibiotics.

Though recognition of IC among doctors has increased—in fact, diagnoses have jumped 50 percent since 1990, according to a study in The Journal of Urology—many still don’t know enough about it. Kristina Hinchliff, 30, an artist and stay-at-home mom in Portland, Oregon, spent more than six months visiting different physicians before she was diagnosed. The last doctor she saw examined the inside of her bladder for ulcers and hemorrhages. Sure enough, the test, which involves stretching the organ with water, then looking at it with an internal scope, revealed tiny bleeding points with starburst-like rays. Hinchliff was lucky—up to 10 percent of women don’t have the telltale signs, and many are diagnosed only after everything else (kidney stones, cancer) has been ruled out.

The constant pain and frequent urge to urinate may leave women who go undiagnosed and untreated unable to work or leave the house. In the months before she found the right combination of drugs to relieve her symptoms, “it took over my life,” says Hinchliff. She used to call in sick to work at least twice a week.

And because the bladder is located so close to the vagina, pressure during intercourse can

make sex unbearable. “I sometimes stayed on the LPGA tour eight weeks in a row so I didn’t have to address that issue,” confesses Myers.

With that sense of isolation compounded by pain, it’s easy to see why women like Diane McLean are driven to despair. Myers, too, almost committed suicide one night in 1992. “I couldn’t envision living another 50 years in pain,” she says. “I wanted to say good-bye to my daughter, so I stopped in her room while she was sleeping. That’s when I realized that I had never been a mother to her because of this illness, and I just couldn’t take myself away from her,” she says.

THERE IS STILL NO CURE for IC, but doctors are now able to offer some help.

Antihistamines, antidepressants, urinary anesthetics and antiseizure medications have all been used successfully to treat symptoms, though their effectiveness varies from patient to patient. “If something doesn’t work, we move on to something else,” says Robert Moldwin, M.D., director of the Interstitial Cystitis Center at Long Island Jewish Medical Center in New Hyde Park, New York. Only one oral medication, Elmiron, is approved for IC; it’s thought to work by reinforcing the protective interior surface of the bladder. Some patients, such as Myers, have had great relief, though

the drug is effective in only about a third of patients, says Dr. Hanno.

Like most IC sufferers, Hinchliff takes a combination of drugs. She also keeps the narcotic Vicodin on hand for her most excruciating flare-ups. “I don’t feel as housebound,” she reports. “Some days are bearable. Other times it feels so bad, I could throw up.”

Such inconsistent relief is insufficient. The Interstitial Cystitis Association, a patientadvocacy group in Rockville, Maryland, has lobbied aggressively for more research funding, and its efforts have been paying off: Last year, the National Institutes of Health allocated $5 million for IC research. And that gives patients hope. “The exciting thing is that 15 years ago, there was almost nothing,” says Vicki Ratner, M.D., an orthopedic surgeon who’s had the condition for 20 years and is president of the association. “Now there’s an international community of researchers. That we have come this far is just phenomenal.” In the future, it’s hoped that all IC patients will be as fortunate as Myers is today: “I have my life back,” she says, “and it’s wonderful.”

By Jean Caulder Just under a month ago, Olivia Crowther, 23, who studied English Literature at Sussex University and was planning a career in publishing, fell to her death from the Golden Gate Bridge.

Olivia left her London flat without telling her family and on Tuesday 24th June checked into a hotel in San Francisco. She was found by California Highway Patrol the next morning. It has emerged that prior to travel she had trawled suicide websites showing tall buildings and bridges.

Her parents are reported to be devastated.

They said their daughter had no history of depression, describing her as “… a loving daughter who seemed to be making her way in the world.” They are struggling to understand what drove her to suicide.

Her uncle, Robert Leader, said the only unhappiness in her life was a nagging bladder problem – reported to be cystitis – which had afflicted her for a year and which doctors had failed to cure. There had been no indication it might drive her to kill herself.

He said “It is a huge mystery and the only

thing I can think of is that she had this health problem that became all-consuming for her and that was a constant nagging source of discomfort.”

Simon Davies studied with Olivia at Sussex University. He said: “.. she was a very clever girl and she never seemed unhappy. We often talked about the future and it seemed to me she’d go on to be successful.”

Her friend Zoey Monk worked with Olivia at SHE magazine. She said: “…. She was so well spoken and such a lovely girl. I would have never thought this would happen to her….”

Olivia was a beautiful young woman with everything to live for. Her family members are understandably angry that she was so readily able to access suicide websites which in effect showed her how to die. However, there is another source of concern here and that is the disease that caused her such torment.

Cystitis is a “minor” illness which is usually experienced by women and the elderly. As such it is often not taken seriously. Yet it can cause serious kidney infection, chronic pain, relationship breakdown and deep depression – and in the elderly, confusion akin to dementia.

Cystitis occurs when the normally sterile lower urinary tract is infected by bacteria and becomes irritated and inflamed. In 85% of

cases bacterial infection is the cause – usually brought about by transfer of escherichia-coli (ecoli) from the bowel through the urethra into the bladder. It is very common in women because of the relatively short distance between the opening of the urethra and the anus and because the urethra is short and bacteria do not have to travel far to do damage.

Cystitis can easily be precipitated by sexual intercourse especially if there is bruising to the surrounding area (hence the term “honeymoon cystitis”). Once bacteria enter the bladder, they are normally removed through urination, however if bacteria multiply faster than they are removed infection results. This is why one of the simplest and most effective self-help techniques is to urinate immediately after intercourse.

The condition commonly affects sexually active adult women. In fact, almost all adult women will experience at least one attack.

However, it may also occur in men, those who are not sexually active, catheter-users or children. Older adults are at particular risk.

The symptoms are a frequent need to urinate and a sharp, burning pain when doing so. Other possible symptoms include cloudy and sometimes bloody urine, backache, lower abdominal pain and fever. In elderly people, the

most obvious symptom may be increased confusion.

It is true that many people who suffer from this complaint do not experience repeated or serious attacks. Nowadays proprietary brands of medicine, usually containing Potassium Citrate, are available over the counter. These can be used at the first sign of a symptom and often do the trick. However, for anyone who cannot afford the remedies, or who does not recognize the symptoms, it can be a very different story.

I vividly remember the excruciating pain I experienced the first time I had cystitis. After the lab results were returned the doctor commented with fascinated sympathy – and some macabre glee – that neither he nor the lab assistants had “ever seen such a virulent attack”. I paid dearly for it, because my kidneys were affected and after that I experienced repeated attacks. Each time I was given antibiotics, but was never taught the self help techniques which could have prevented the disease.

I recall one particularly unpleasant night attack.

I had a high temperature and was bleeding and in great pain. In desperation I called an out of hours doctor to provide a prescription for antibiotics. The next day I reported this by

telephone to the surgery only to have one of the receptionists comment in horror “You called out a doctor for cystitis!” I felt too ill and humiliated to object, but have thought about that ignorant and callous comment a great deal since poor Olivia died.

On one occasion, I was completely incapacitated after getting what my grandmother would have called a “chill on the kidneys” while boating on the Serpentine. My doctor poured considerable scorn on the idea that a “chill” could precipitate cystitis, saying that this was an old wives tale. Nonetheless, I discovered over time that a combination of dehydration and a chill across my back would almost always precipitate an attack. I learned that by drinking a great deal of water, keeping my lower back warm and taking a teaspoon of Potassium Citrate in water at the first sign of symptoms, I could completely avoid attacks.

Things changed for sufferers in the 1970s when Angela Kilmartin, herself a chronic cystitis sufferer, published her book “Understanding Cystitis”. It was part of a wave of publications about women’s health which sprang from the women’s movement of the time. These had in common deep scepticism about conventional medical practice and a commitment to prevention and self-help.

Kilmartin’s book became a bestseller. It emerged that thousands of women had suffered in silence from chronic cystitis and that there had been more than one cystitis-related suicide. At last, women began to realize that they were not just “making a fuss”, but were experiencing a significant and potentially serious health problem.

Self-help techniques began to be well publicised and circulated, first by women themselves and then by some doctors. Cystitis sufferers began to realize that repeated doses of antibiotics were causing chronic thrush which in its turn was causing re-infection.

Women’s demand for better treatment eventually resulted in proprietary brands of medication for cystitis – and thrush – becoming available without prescription. However, it seems that in these so called post-feminist days, essential preventative techniques are being forgotten.

Women’s magazines, which in the 1970s and even the 1980s would have publicised such techniques, now seem more concerned with women’s sexual performance than with their health. Schools sex education programmes certainly don’t provide information. And yet, given the early sexual activity of so many young girls, infection is likely to be on the increase.

Cystitis is a sordid mean little disease. It doesn’t kill – at least not directly – but it can destroy lives. We will probably never know exactly what drove Olivia Crowther to her tragic death. All we can do is to try to understand her desperation and hope that as she jumped from that beautiful bridge, she felt an end to pain – and that for just one brief moment she thought she was flying.

By Pat Anson This will be the first Christmas that Tammi Hale spends without her husband Doug in over 30 years.The 53-year old Vermont man, who suffered chronic pain from interstitial cystitis, committed suicide in October after his doctor abruptly cut him off from opioid pain medication.

"His primary care provider kept trying to wean him off his opioid therapy, which worked at higher doses,” says Tammi. “My husband ran out (of medication) early a few times, so the doctor cut him off completely one day. Six weeks later he took his life as no medical establishment would treat his chronic pain.”

We’re telling Doug Hale’s story, as we have those of other pain patients who’ve committed suicide, because their deaths have been ignored or lost in the public debate over the nation’s so-called opioid epidemic. Patients who were safely taking high doses of opioids for years are suddenly being cutoff or tapered to lower doses. Some are being abandoned by their doctors.

"I believe it will get worse with time.The docs are simply more interested in not risking their licenses than in treating chronic pain,” Tammi wrote to Pain News Network in a series

of emails about her husband’s death.

Depression and suicidal thoughts are common for many people living with chronic pain and illness. According to a recent survey of over a thousand pain patients, nearly half have contemplated suicide.

But the problem appears to have grown worse as physicians comply with the “voluntary” prescribing guidelines released in March by the Centers for Disease Control and Prevention, which have been adopted as law in several states. Many doctors now fear prosecution and loss of their medical licenses if they overprescribe opioids. Some have chosen not to prescribe them at all.

While federal and state authorities track the number of drug overdose deaths, no one seems to be following the number of patients who are dying by suicide or from cascading medical problems caused by untreated chronic pain. Some in the pain community call this “passive genocide.” Tammi Hale compares it to the Holocaust.

“The Nazis eliminated the sick and the weak first, right? Makes you wonder,” she says. “I realize my comments are harsh, but I believe the public needs to be aware of the dangers any one of us could be facing with this silent epidemic.”

Doctor Insisted on Weaning. Doug Hale began facing a life with intractable chronic pain in 1999, after a surgery left him with interstitial cystitis, a painful inflammation of the bladder.

According to his wife, Doug tried physical therapy, antidepressants, epidurals, nerve blocks, TENS, cognitive behavioral therapy, and several different medications before finally turning to opioids for pain relief. High doses of methadone and oxycodone for breakthrough pain were found to be effective.

But a few years ago, Doug’s primary care provider (PCP) started urging him to wean to a lower dose. "The PCP insisted on weaning.

Although Doug clearly had documented malabsorption issues, the PCP persisted on weaning. The pressure to wean was unbelievable,” says Tammi.

"It came to a head in May of 2016. The PCP gave Doug one month to wean completely from 120mg/day of methadone and 20 mg/day of oxy. We knew this was impossible.”

Tammi says Doug checked himself into a 7 day detox program, where he was weaned to 40 mg of methadone a day. The doctor agreed to prescribe that amount, but it was not enough to relieve Doug’s pain. He started taking extra doses." He ran out a week early in late August.

The PCP abandoned Doug, stating ‘I'm not

going to risk my license for you. The methadone clinic can deal with you.’”

But the methadone clinic refused to treat Doug because they saw him as a chronic pain patient, not as an addict. “Had he turned to street drugs they could have treated him, but because he didn't break the rules they couldn't help,” Tammi explained.

Doug tried to detox at home, which Tammi calls a “brutal” experience. On October 10th, after being turned down by other healthcare providers, Doug went to his former doctor one last time to beg for help and was refused. The doctor said again that he didn’t want to risk his license.

"Doug left the office still thrashing in pain and despondent,” Tammi recalls. “The next day, my dear, sweet thoughtful husband of 32 years; a father, son, brother, uncle, and friend, well loved by many, dragged a chair to a remote spot in our back yard. A spot we could not see from the house, the road, or by the neighbors.

“He shot himself in the head to escape his pain.

He made sure we could still live in our home and not be plagued by gruesome memories. I just wish the medical establishment had an ounce of the compassion that he did.”

"Can’t take the chronic pain anymore. No

one except my wife has helped me,” Doug wrote in a suicide note. “The doctors are mostly puppets trying to lower expenses, and (do not accept) any responsibility. Besides people will die and doctors have seen it all. So why help me.”

Tammi says she has been comforted by an outpouring of love and support from her family, friends and community. Doug’s suicide surprised many. "Doug did make vague references about suicide during the summer due to the desperation and pain. He was just such a tough guy, he survived so much that my reaction, and others after the fact, was no. Not Doug. He's like the bionic man. Too much of a warrior to give up,” said Tammi.

"At his memorial so many people commented on what an inspiration he was to them. To graciously bear the path of pain and his never-give-up attitude made them reevaluate their own daily issues. I guess you could say his legacy was love and to never quit.”

Tammi consulted with a medical malpractice attorney after Doug's death, who told her the chances of winning a lawsuit against the doctor were slim. The cost of legal action would have also been prohibitive, after so many years of dealing with Doug’s medical expenses.

Tammi and Doug may never get their day in court, but she is determined to share his story in the hope that patients, doctors and regulators learn from it.

“My promise to him was to share with others.

He was thrown away like a piece of trash, but his life and the life of all humans is precious. All patients deserve to be treated respectfully,” she wrote. “Hopefully some changes will come in time before the holocaust grows too much larger.”

By Claudia Tanner Thursday May 10th 2018 Zara Bough, a 32-year-old woman from Oxfordshire, has shared how she has chosen to have her bladder removed after interstitial cystitis drove her to try to take her own life. She has suffered with agonising pain and has needed to go to the toilet up to 60 times a day since she was a teenager. The chronic condition, which causes the bladder to swell, caused her to be completely bedridden for three months and often leaves her unable to walk without the use of a stick.

She says having interstitial cystitis has caused her depression, forced her to give up her social life and a career working with children and made relationships impossible.

She says having interstitial cystitis has caused her depression, forced her to give up her social life and a career working with children and made relationships impossible.

After the annual operations to stretch her bladder she had for a decade stopped being effective, the bakery worker says her increasingly debilitating symptoms led her to opt for the drastic surgery. The procedure will create a replacement bladder from a section of her bowel. A catheter (a thin, plastic tube) will run from the new bladder (called a neobladder)

to the skin of her stomach to allow her to pass water, appearing like an extra tummy button.

Zara says the operation was a “last resort” and is hoping the major operation will give her her “normal life” back. She is now speaking out in a bid to remove the stigma of living with a bladder problem. Zara, from Banbury, told i: “Interstitial cystitis is such a little-known condition. It’s nothing like the common bacterial cystitis many women get."

"Living with it is very isolating and lonely. I felt embarrassed and kept it a secret for years but now I want more people to be aware and understanding of what living with the condition is like. “I’m scared of the operation to remove my bladder and when I first found out about it I was horrified. But things have got so bad now it’s my only option and I’m excited at the thought of having a normal life.”

"Zara had suffered with bladder control problems since she was a toddler but doctors dismissed them as a normal part of growing up.

But when she was 13 she began experiencing severe pain that left her in tears. After years of tests, she was finally diagnosed aged 21 with interstitial cystitis, also known as painful bladder syndrome, which affects an estimated 400,000 people in UK, the majority women.

"The disease causes chronic inflammation

or irritation of the bladder wall, resulting in intense pelvic pain, sudden, strong urges to pee, needing to pee more often than normal and waking up several times during the night to go to the toilet. Zara managed to achieve a degree in childhood education but had to give up her nursery job because rushing to the toilet so often meant she couldn’t supervise children properly. She tried multiple instillations – drugs that are introduced into the bladder by catheter – but they failed to provide relief.

"Over the years her condition deteriorated to the point she felt life wasn’t worth living. “I used to go pole dancing and I travelled a lot, but now it’s so bad it’s a major struggle going to the shops,” she said. “I’ve lost a lot of friends because I miss out on social events. I can’t date anyone because I can’t do the things they want to go out and do. Sex is painful too. “Last year it all got too much for me and I attempted suicide because I felt I just couldn’t go on like this.”

"Zara is now on the waiting list for the procedure, called a cystectomy with a Mitrofanoff procedure. She also hopes people will change their attitudes towards people with “invisible illnesses”. “I can’t go out of the house unless I plan and know where I can access a toilet. I have a ‘Just Can’t Wait’ Card provided

by the charity Bladder Health UK yet people can still be so rude. “I’ve been refused to be allowed to go to the toilet in shops and other people queuing in toilets have told me ‘Well I need to go to the loo too.’ “I work at Co-op Bakery and luckily my boss has been amazing and allows me time off when I need it.

“Hopefully my new bladder will mean a new life.”

Read more at: https://inews.co.uk/news/health/ cystitis-bladder-removal/

July 15, 2018 In closing this book, I am hoping it has helped you to understand that Interstitial Cystitis is a life altering illness. We did not choose to have this. The cause is still a mystery. I pray one day there will be a cure. I will continue to research every single day like I have been for the last 2 years.

My bladder is still in its healing process from the hydro and fulguration. It feels as if it's " nervous" if that makes sense. It quivers and shakes , and feels like littles volts of electricity .

I walk around as if I'm pregnant, protecting my bladder from anything that might touch it.

Driving has been a challenge for me lately. First of all the seatbelt hurts. Something needs to be done for those of us with this condition, some type of protection from the seatbelt. Also I'm having trouble driving my car which is a stick shift. For some reason my left leg also quivers with my bladder, making it hard to drive.

Hmmmm, isn't that the same side the Pudendal Nerve is on?

I'm not in as much pain as I was before the surgery, so that's good. I'm predicting that I will have to continue these surgeries yearly in order to live somewhat pain free, because if surgery

wasn't an option I don't know what I would do.

It's very easy to fall into a deep dark place with this illness. If you have a loved one with IC, I hope this book has been helpful to you.

To my IC Sisters, please know that you are not alone. I know sometimes it may feel that way, believe me , I know! There are several support groups online. I now have thousands of new friends and " sisters" thanks to Facebook !

There are numerous IC support groups that not only provide useful information, but also provide a safe place for us to talk. A few of my favorites are IC Support which is administrated by my very good friend April, Interstitial Cystitis/ Painful Bladder Syndrome, and of course my own group, The Firecrotch Fairy!

I have developed a very useful crossword puzzle for newly diagnosed IC patients to learn about IC. When I was first diagnosed my doctor didn't explain the disease to me. He handed me a pamphlet and said there are several support groups online. I didn't know that my whole life was going to change. I didn't know that I would have to endure in multiple surgeries that would stretch and burn my bladder. I didn't know I wouldn't be able to ever live a normal life. I was handed a prescription for Elmiron and sent on my way. I had to research hours on end to learn about this

horrible illness that I was just diagnosed with.

Doctors don't take the time to sit down with you anymore. They overbook appointments and don't take the time to even read our charts, which I have learned. I'm not saying every doctor is like that, but for us IC'ers , this seems to be the case. Anyways, if you'd like a copy of my crossword puzzle it's available in printed format and a fun little mobile app like format as well. Just visit my website or shoot me an email.

Thank you for taking the time to learn about Interstitial Cystitis. I'm hoping I won't have to write another book, and that society will take the time to learn more about this disease. We need to spread awareness! We need worldwide restroom access cards given to every single IC patient! And most of all, we need a television commercial about IC. There are tons of commercials for depression, dry eyes, fibromyalgia and more, but what about Interstitial Cystitis?? There are so many women in pain right now that don't even know that IC even exists! We cannot afford to loose anymore men and women because of this horrible disease! SPREAD Awareness! SAVE LIVES!

The Firecrotch Fairy

Contact Me

www.greenwitchca.com greenwitchproductsca@gmail.com

" A must have in every Urologist's office!" " The IC Bible!"

"By far the best IC book I have ever read!"

ry

e Th

e, ch v Lo rot c re i F

i Fa