The Firecrotch Fairy Diary - Understanding Interstitial Cystitis

The Firecrotch Fairy Diary

Understanding Interstitial Cystitis

Dolores Runte

The Firecrotch Fairy Diary

The Firecrotch Fairy Diary: Understanding Interstitial Cystitis Copyright Š 2018 by Dolores Runte CNHC, IC Warrior All rights reserved. No part of this book may be reproduced, distributed, or transmitted in any form or by any means, including photocopying, recording, or other electronic or mechanical methods, without the prior written permission of the author, except in the case of brief quotations embodied in critical reviews and certain other noncommercial uses permitted by copyright law.

Special discounts are available for booksellers or others. Inquire support@bookemon.com Printed in United States of America Bookemon Creative Author Press Publication Publication Date: 2018-05-21 ISBN-13: 9781605006857

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The Firecrotch Fairy Diary Understanding Interstitial Cystitis

Dolores Runte

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This book is for all the Doctors out there who say our pain is " all in our heads" I promise every single one of you, that if you had to deal with this pain on a daily basis, you would not only know how to pronounce Interstitial Cystitis, but you would also want to help treat and cure our " Invisible Illness".

Just because you cannot see our pain, it doesn't mean it doesn't exist.

This book is dedicated all my " Girls" !

You know who you are. Thank you for all of your support! Thank you for being my Guinea Pigs .Most of all, thank you ALL for being my FRIENDS #thefirecrotchfairy 7

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In Memory of Allison Kimberly

Allison Kimberly, age 30, of Colorado was denied treatment for her intractable pain from interstitial cystitis, and several other painful conditions. Interstitial cystitis can end in suicide from the failure to treat it properly as it is an extreme form of agonizing discomfort. It is said the University of Colorado emergency room in Aurora refused her treatment for her pain.

Allison posted on Instagram describing how she was treated as an addict and sent away without pain medicine.

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"I was rushed to the ER because my pain was so out of control I couldn’t take it anymore, I got ZERO help. After 7 hours I was discharged. The nurse has the nerve to say that my kind of pain shouldn’t be that bad and basically I was faking for medication. I am so beside myself I am shaking as I type this. Screaming and begging in pain, needing any kind of help they’d give me and I was just sent home. As soon as I am able I’m reporting my whole experience” Allison did not have time to file a complaint against the hospital as she violently ended her life while her mother walked her dog, the animal companion that had made her anguish less lonely. No doctors appear to have been charged. The Colorado Hospital Association was in the process of piloting a no-opioid policy for the state. She died in June, 2017.

More and more patients will die if our government continues its brutal War Against Chronic Pain Patients. We take daily opiates not because we want to, but because we have no other choice. Without proper pain management our lives are over.

More and more of our brothers and sisters will continue to commit suicide if our pain is ignored and untreated. We deserve better than this.

Don't let the death of our sister go unanswered!!

Tell the government we are #PatientsNotAddicts and we have rights too!! #CNN #CNNHealth #SuicideDue2Pain #POTUS #OpiateEpidemic #ChronicPain #WarOnDrugs #FLOTUS

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IMPORTANT DISCLAIMER: Some of the health topics presented in this book have not been evaluated or approved by the FDA. Please be 100% clear that these are experimental protocols that have been used and created by me. They have been tested solely by myself and others in this book, so you proceed entirely at your own risk if choosing to use the natural remedies discussed in this book. They should not replace personal judgment nor medical treatment when indicated, nor are they intended to diagnose, treat, cure, or prevent any disease. Always talk to your physician about the use of these or other complementary modalities. By reading this book, you are acknowledging your understanding and agreement to our full disclaimer.

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Contents Authors Note page 17 What Is Interstitial Cystitis? page 19 What does an IC flare feel like? page 37 How long did it take to become properly diagnosed with IC? page 67 Yeast and IC page 92 My journey with IC page 104 Natural Alternatives page 159 About Me page 163

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Authors Note This book details the lives of Men & Women with Interstitial Cystitis . Interstitial Cystitis is an auto- immune disease that for whatever reason, attacks the lining of the bladder. The constant attacking and breaking down of the bladder causes the protective layer to become completely stripped away, causing the nerve endings to become exposed to anything and everything it comes in contact with. In normal words , your bladder hates you.

My hopes for this book are to Educate Doctors, (yes I said educate ) on Interstitial Cystitis. No more mis- diagnosing, sending us home with Pyridum, masking the problem instead of treating it. It took me 4 years to finally even convince a Doctor that it was my bladder and not my Uterus. Doctors are so quick to get you in and out, that they don't even listen to us. Most of them have never even heard of Interstitial Cystitis.

Interstitial Cystitis is ruining lives, breaking up families, and taking over the lives of thousands of Men & Women .

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Spouses think we are making it up to get out of sex. Friends think we are making it up and being anti- social. Children are going to functions without their parents because we cannot get out of bed. Men & Women are ending their lives because they can no longer take the pain. And most of all, Doctors are treating US like hypochondriacs looking for a fix.

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What Is Interstitial Cystitis?

"Interstitial

cystitis (in-tur-STISH-ul sis-TIEtis) — also called painful bladder syndrome — is a chronic condition causing bladder pressure, bladder pain and sometimes pelvic pain. The pain ranges from mild discomfort to severe.

Your bladder is a hollow, muscular organ that stores urine. The bladder expands until it's full and then signals your brain that it's time to urinate, communicating through the pelvic nerves. This creates the urge to urinate for most people.

With interstitial cystitis, these signals get mixed up — you feel the need to urinate more often and with smaller volumes of urine than most people.

Interstitial cystitis most often affects women and can have a long-lasting impact on quality of life. Although there's no cure, medications and other therapies may offer relief."

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Symptoms "The signs and symptoms of interstitial cystitis vary from person to person. If you have interstitial cystitis, your symptoms may also vary over time, periodically flaring in response to common triggers, such as menstruation, sitting for a long time, stress, exercise and sexual activity.

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Interstitial cystitis signs and symptoms include: Pain in your pelvis or between the vagina and anus in women Pain between the scrotum and anus in men (perineum)

Chronic pelvic pain, a persistent, urgent need to urinate, frequent urination, often of small amounts, throughout the day and night (up to 60 times a day).

Pain or discomfort while the bladder fills and relief after urinating.

Pain during sexual intercourse.

Symptoms severity is different for everyone, and some people may experience symptom-free periods.

Although signs and symptoms of interstitial cystitis may resemble those of a chronic urinary tract infection, there's usually no infection. However, symptoms may worsen if a person with interstitial cystitis gets a urinary tract infection."

Causes "The exact cause of interstitial cystitis isn't known, but it's likely that many factors contribute. For instance, people with interstitial cystitis may also have a defect in the protective lining (epithelium) of the bladder. A leak in the epithelium may allow toxic substances in urine to irritate your bladder wall.

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Other possible but unproven contributing factors include an autoimmune reaction, heredity, infection or allergy.

Risk factors These factors are associated with a higher risk of interstitial cystitis: Your sex. Women are diagnosed with interstitial cystitis more often than men.

Symptoms in men may mimic interstitial cystitis, but they're more often associated with an inflammation of the prostate gland (prostatitis).

Your skin and hair color. Having fair skin and red hair has been associated with a greater risk of interstitial cystitis.

Your age. Most people with interstitial cystitis are diagnosed during their 30s or older.

Having a chronic pain disorder. Interstitial cystitis may be associated with other chronic pain disorder, such as irritable bowel syndrome or fibromyalgia."

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Complications "Interstitial cystitis can result in a number of complications, including: Reduced bladder capacity. Interstitial cystitis can cause stiffening of the bladder wall, which allows your bladder to hold less urine.

Lower quality of life. Frequent urination and pain may interfere with social activities, work and other activities of daily life.

Sexual intimacy problems. Frequent urination and pain may strain your personal relationships, and sexual intimacy may suffer.

Emotional troubles. The chronic pain and interrupted sleep associated with interstitial cystitis may cause emotional stress and can lead to depression.

When to see a doctor: If you're experiencing chronic bladder pain or urinary urgency and frequency, contact your doctor."

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Your Dr will most likely give you a Bladder Diary before diagnosing you. This diary will keep track of how much fluid you drink versus how much urine comes out when you urinate.

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Diagnosis

By Mayo Clinic Staff Print The following may be helpful in diagnosing interstitial cystitis: "Medical history and bladder diary. Your doctor will ask you to describe your symptoms and may ask you to keep a bladder diary, recording the volume of fluids you drink and the volume of urine you pass.

Pelvic exam. During a pelvic exam, your doctor examines your external genitals, vagina and cervix and feels your abdomen to assess your internal pelvic organs. Your doctor may also examine your anus and rectum.

Urine test. A sample of your urine is analyzed for signs of a urinary tract infection.

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Cystoscopy Your doctor inserts a thin tube with a tiny camera (cystoscope) through the urethra, showing the lining of your bladder. Your doctor may also inject liquid into your bladder to measure your bladder capacity.

Your doctor may perform this procedure, known as hydrodistention, after you've been numbed with an anesthetic medication to make you more comfortable.

Biopsy. During cystoscopy under anesthesia, your doctor may remove a sample of tissue (biopsy) from the bladder and the urethra for examination under a microscope. This is to check for bladder cancer and other rare causes of bladder pain.

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Urine cytology. Your doctor collects a urine sample and examines the cells to help rule out cancer.

Potassium sensitivity test. Your doctor places (instills) two solutions — water and potassium chloride — into your bladder, one at a time. You're asked to rate on a scale of 0 to 5 the pain and urgency you feel after each solution is instilled. If you feel noticeably more pain or urgency with the potassium solution than with the water, your doctor may diagnose interstitial cystitis.

People with normal bladders can't tell the difference between the two solutions."

Treatment

By Mayo Clinic Staff Print "No simple treatment eliminates the signs and symptoms of interstitial cystitis, and no one treatment works for everyone. You may need to try various treatments or combinations of treatments before you find an approach that relieves your symptoms.

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Physical therapy Working with a physical therapist may relieve pelvic pain associated with muscle tenderness, restrictive connective tissue or muscle abnormalities in your pelvic floor.

Oral medications Oral medications that may improve the signs and symptoms of interstitial cystitis include: Nonsteroidal anti-inflammatory drugs, such as ibuprofen (Advil, Motrin IB, others) or naproxen sodium (Aleve), to relieve pain.

Tricyclic antidepressants, such as amitriptyline or imipramine (Tofranil), to help relax your bladder and block pain.

Antihistamines, such as loratadine (Claritin, others), which may reduce urinary urgency and frequency and relieve other symptoms.

Pentosan polysulfate sodium (Elmiron), which is approved by the Food and Drug Administration specifically for treating interstitial cystitis.

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How it works is unknown, but it may restore the inner surface of the bladder, which protects the bladder wall from substances in urine that could irritate it. It may take two to four months before you begin to feel pain relief and up to six months to experience a decrease in urinary frequency."

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Nerve Stimulation "Implanted nerve stimulation device Sacral nerve stimulator Sacral nerve stimulation device Nerve stimulation techniques include: Transcutaneous electrical nerve stimulation (TENS). With TENS, mild electrical pulses relieve pelvic pain and, in some cases, reduce urinary frequency. TENS may increase blood flow to the bladder. This may strengthen the muscles that help control the bladder or trigger the release of substances that block pain.

Electrical wires placed on your lower back or just above your pubic area deliver electrical pulses — the length of time and frequency of therapy depends on what works best for you.

Sacral nerve stimulation. Your sacral nerves are a primary link between the spinal cord and nerves in your bladder.

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With sacral nerve stimulation, a thin wire placed near the sacral nerves sends electrical impulses to your bladder, similar to what a pacemaker does for your heart. If the procedure decreases your symptoms, you may have a permanent device surgically implanted. This procedure doesn't manage pain from interstitial cystitis, but may help to relieve some symptoms of urinary frequency and urgency."

Bladder Distention "Some people notice a temporary improvement in symptoms after cystoscopy with bladder distention. Bladder distention is the stretching of the bladder with water. If you have long-term improvement, the procedure may be repeated.

Medications instilled into the bladder: In bladder instillation, your doctor places the prescription medication dimethyl sulfoxide (Rimso-50) into your bladder through a thin, flexible tube (catheter) inserted through the urethra.

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The solution sometimes is mixed with other medications, such as a local anesthetic, and remains in your bladder for about 15 minutes. You urinate to expel the solution.

You might receive dimethyl sulfoxide — also called DMSO — treatment weekly for six to eight weeks, and then have maintenance treatments as needed — such as every couple of weeks, for up to one year.

A newer approach to bladder instillation uses a solution containing the medications lidocaine, sodium bicarbonate, and either pentosan or heparin."

Surgery "Doctors rarely use surgery to treat interstitial cystitis because removing the bladder doesn't relieve pain and can lead to other complications.

People with severe pain or those whose bladders can hold only very small volumes of urine are possible candidates for surgery, 32

but usually only after other treatments fail and symptoms affect quality of life. Surgical options include: Fulguration. This minimally invasive method involves insertion of instruments through the urethra to burn off ulcers that may be present with interstitial cystitis.

Resection. This is another minimally invasive method that involves insertion of instruments through the urethra to cut around any ulcers.

Bladder augmentation. In this procedure, a surgeon increases the capacity of your bladder by putting a patch of intestine on the bladder. However, this is performed only in very specific and rare instances. The procedure doesn't eliminate pain and some people need to empty their bladders with a catheter many times a day."

Alternative Medicine "Two complementary and alternative therapies show some promise in treating interstitial cystitis:

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Guided imagery. This type of therapy employs visualization and direct suggestions using imagery to help you imagine healing, with the hope that the body will follow the mind's suggestions.

Acupuncture. During an acupuncture session, a practitioner places numerous thin needles in your skin at specific points on your body. According to traditional Chinese medicine, precisely placed acupuncture needles relieve pain and other symptoms by rebalancing the flow of life energy. Western medical practitioners tend to believe that acupuncture boosts the activity of your body's natural painkillers.

These treatments have not been wellstudied for interstitial cystitis, so be sure to discuss the use of these therapies with your doctor." *info provided by The Mayo Clinic For further info visit mayoclinic.org

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The following chapters are based on questions I asked members in my online support group, " The Firecrotch Fairy!

Natural Healing For IC & Pelvic Pain."

Nothing has been edited or deleted. These are real life answers from real Interstitial Cystitis sufferers, both Men and Women.

What you are about to read is the harsh reality of Interstitial Cystitis.

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Types of IC flares: "There are typically 3 types of interstitial cystitis flares: bladder wall flares, pelvic floor flares, and muscle flares.

Bladder wall flares are most often characterized by a feeling of ground glass or razor blades scraping the bladder. During these flares the bladder has often been irritated by a food/drink sensitivity and becomes more inflamed than usual.

Pelvic floor flares can be a product of sexual intercourse, long periods of sitting, or something seemingly as simple as riding a bike. They are more of a burning feeling in the urethra, vaginal area, or any part of the pelvic floor. They can also feel like something is falling out of or being pushed into your vagina or urethra.

A muscle flare is typically when the bladder muscle goes into spasms and will often cause a severe aching feeling in the bladder.

The pelvic floor muscles can also become tight, spasm, and ache."

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What Does an IC Flare Feel Like? " shards of glass and acid constantly swishing around in my bladder. Along with that, imagine a hot fire poker constantly stabbing at your cervix. The inside of your Vagina feels like a constant sunburn. The bladder sometimes feels heavy like a boulder,spasming whenever it chooses to do so. Your abdomen bloats , sometimes so badly that you look 6 months pregnant. It hurts to sit, it hurts to stand. " "I feel like someone is scrubbing my bladder and vagina with a bottle brush."

"IC feels like death! I'm being stabbed everyday my bladder wants to kill me. I have never felt such intense pain it feels like I sat on a knife and it comes out my lower back.

It feels like fire at times like I am going to give birth to an acid bomb. It feels like I have spikes inside my bladder puncturing my surrounding organs."

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"Like im in labor with my bladder all the time but i dont want to give birth to it. To me its worse than labor cause that pain goes away."

"For me, my bladder feels heavy it's spasms it burns feels like I'm being poked with a hot poker from the fireplace :-( My pelvic floor and my low back aches. Psychologically it's very stressful because I never know when it's going to come and go."

"I always say it feels like someone jabbing knives through my bladder. Now I've got the Vulvodynia pain to go with it."

"8-10 level pain daily. The most miserable pain, that has sucked the life out of me. One of my Docs told me IC is a Systemic Autoimminue disease. Thus, it's starting to ravish the rest of my body. Mine is mostly dreadful bladder pain, that has caused severe PFD, severe back problems, Sciatica, severe left flank pain, etc. I can't explain how the pain feels, mostly bc it's different every hour of everyday....

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It can be the worst menstrual cramps ever on steroids, or stabbing pain, with or without burning, urgency & frequency. Had Vulvadynia the 1st year of IC & both together was so miserable!! It hurt so badly that it itched, like a hot poker iron stabbing into the vesticular area."

"Mine feels like I have a tampon in that is soaked in acid" "Stabbing pain in my lower left abdomen.

Sex sometimes is unbearable."

"Some days it feels like I have a porcupine in my vagina. It also feels like all of my insides are going to come out of my body."

"A red hot bowling ball trying to push it's way out through my vagina." "being on your period 24/7."

"Mine is much like what everyone else said above comments. Except mine has never been less than a 6 on the pain scale. It is almost always an 8....

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This week it was a 10. I get in so much pain when it is 10+ and goes on for days that i wish I was dead because the pain runs down my legs. I can barely walk to the bathroom. Although I need to shower or soak in a tub I have no strength from sheer exhaustion of being up and down peeing or sitting on the toilet in pain. Crying out to noone. I think one of the hardest parts of the disease is being alone. My husband left me because he said he couldn't handle me being sick all the time. Like I have control. I have missed grandchildren performances, vacations and even the ability to have company. If not for my grandchildren I would have no reason to live. And I can say that here because I know I'm not alone and won't be judged. My best friend is my heating pad. My company is my cat and dog. They Don't care if I'm weak and sickly. I don't have to explain to them what is wrong with me. I think this disease not only takes us physically a little at a time but emotionally also."

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"IC feels like a hot poker stabbing my urethra, to my bladder. The weight of a bowling ball in my bladder feeling like it's going to fall out. Going to the bathroom with only a teaspoon of urine coming out 40+ times a day. IC feels lonely, because the people that used to be your friends ditched you long ago. Your family doesn't even understand. IC is missing out on your kids because you're in too much pain to get up.

IC feels like you've died inside.. like you're a ghost watching everyone, while no one sees you. IC is internal death."

"Like a rolling pin of fire hot needles that is being rolled up and down my whole pelvic area and my lower back. It's at its worse early in the morning and late at night not counting a full day flare."

"For me or feels like someone is taking a razor blade and cutting the inside of my bladder then pouring lemon juice over where they cut. Also like my bladder is being twisted in a knot or I need to give birth.

Then the is what I refer to as fire crotch."

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"I feel like im walking with razors in my vagina, and the heavy weights in my bladder that cause cramps in my hips, I can feel literally like im tied from my vag to ribs bent over in a huge cramp. Irritated by the mental side of it all too."

"I occasionally get the stabbing bladder pain, but it's almost always urethral burning. I feel like I'm peeing glass at my worst and my normal is more like I have Tabasco sauce on the inside and out."

"Ditto on the glass...I describe a flare as broken blown glass pieces cutting the inside of my bladder while a match burns at the opening."

"I'd rather give labor every week than go through IC." "Sleep deprived.. insanely uncomfortable.."

"It feels like there is a cactus in my bladder that is pushing outwards."

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"I describe it to family as cutting open a pumpkin, carving it out and trying to scrape out the insides. That may be graphic but I always visualize it with a bad flare. Scraping and clawing to get all those hanging bits out. Then lighting a candle and it burning."

"I've had IC since a child and I'm now 35 and the best way I can describe it and what I've always told doctors it's like " A constant UTI 24/7 every day of my life and when I urinate it feels like a knife is inside me and hot coals are being released through my ureathra."

"I have felt like there were shards of glass or that my bladder was scrubbed by a brillo pad. My most frequent pain feels like acid on an open wound."

"A never ending battle. I've had it since I was born, but went undiagnosed until 17.

I'm now 30. It is constant. Constant pain physically, and from that comes a mental aspect also. There has been no other pain in my 30 years quite like IC....

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I've had kidney stones, given birth, root canals. There's nothing I can think of bad enough to compare it to. Bee stinging sensations every waking minute. The burn of gasoline and acid mixed together. Salt and vinegar on an open, flesh exposed woundand that's only the beginning."

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"Let's play a game. First, let's imagine the worst charlie horse you've ever had but instead of your legs it's your bladder. It’s one of those that will cramp up and never relent.

If it does relent, it's only for a few seconds before it starts all over again or it starts in on another cramp while the first one is still happening. So basically you have a clenched fist in your abdominal area that is trying to stretch all the muscles inwards.

Now that the bladder is mad, it wants to cause a riot in your abdomen so the uterus (for women), pelvic floor muscles and all the other surrounding abdominal muscles start spasming right along with it. Are we having fun yet? Guess what, there's more!

Now we get to take Freddy's claws and repeatedly jab them into the same area for some more laughs....

Then, let's top it off by dousing the area with alcohol and setting fire to it strictly for entertainment purposes. Then all bodily fluids are released at that same temperature.

Let's remember that these trips to the bathroom come on quickly and frequently, I'm lucky it's only 15-20 times a day.

That's the IC part, want me to describe the PFD and fibro on top of it?"

"Having IC means always looking for a bathroom. My bladder feels like it is on fire when I have urine in it, which is a lot of time.

I pee every night 3-6 times a night. I wake up and my bladder is on fire and I have to get up immediately to use the rest room.

Once I pee though I feel better until time to pee again. It feels like razor blades sometime when the urine comes out. I do feel better now due to changing my diet and taking some supplements but I do have to pee ALL the time and I do stress out about " where is the bathroom."

"I start by saying, unlike most people who are not even aware they have a bladder unless they have to pee, I feel mine all the

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time,I'm constantly aware I have a bladder.

Sometimes it's mild, but I'm still aware, sometimes there is burning, sometimes it feels like someone lit a match and I'm peeing gasoline. The spasms when they happen are hands down the worst, they are so brutal I lose control sometimes of everything when I have them, one drop of pee will send the muscles into a spasm that feels like a volcano erupting, like I'm peeing hot lava with the force of a fire hose through a tiny urethra. It's my 10, it's the one thing there is no distraction from, meds don't work, can't sleep, can't stand up without peeing all over yourself, all I can do is try and find a way to lay down, grip the sides of the bed and pray that it ends soon."

"I would describe my IC pain as my bladder is on fire and being pulled. Then i feel pressure in my vagina and like im going to pee on myself all at the same time."

"Like im in hell, burning and stinging all the time. Like acid burning me from the inside.

Physical and complete mental exhaustion.

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Always hoping to wake up and the pain is gone and it is just one big nightmare."

"I always feel my bladder. No matter what time of day or night. There are the bad days when it feels like my bladder is so full that it goes in the urethra and with every step I take my muscles could give in and I'd pee all over myself. Then when I go to the bathroom - barely anything comes out.

There are no "good" days, just "better than bad" ones. IC turned my life around, from being a very outgoing, happy, always on the move girl to a stay-at-home, depressed woman who can't even pursue the career she wants because there might be no restrooms in sight when working her dream job."

"Like I have a huge cut, and someone is rubbing lemon and salt on it! And pressure so bad feels like my butthole is going to rip open horrible... and outside of vagina has burning like soap was left down there! Even around the hole ,constant 24/7 pain."

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"My ic is mild and luckily most of the time when in a flare, it feels like my bladder is constantly full no matter how many times I've gone to the bathroom."

"IC feels like torture on a daily basis. As I sit and type this I have 10 pounds of fluid that has built up on me from a severe flare. I look at least 6 months pregnant and the rest of my body is swollen. It feels like someone is stabbing me on each side from the outside with a knife and it feels like there's a million little little evil creatures that have a hot iron pokes stabbing me from the inside bringing me to my knees or to the floor. It feels like someone is inside me standing on top of my bladder like I am about to give birth to it. It's agony. It has robbed me of my life. It keeps me up at night having to go to the bathroom 10 times or more so I never get good quality sleep. It is pain that I live with everyday that never drops below a 6/7 on the pain scale. It feels like a fire is always going inside my bladder and when I pee it feels like pure acid coming out and will make me yell out loud asking for the pain to please stop.

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It feels like acid or something acidic being poured on the cracks and lesions on my bladder at all times. It's made me a prisoner of my own home. I hate IC." "Mine feels like a spasmy tornado full of razor blades, lime juice, and salt."

"Feels like im in labor all the while someone has a hotpoker with spikes on it inside of me."

"Feels like a bladder infection that has been left untreated for years."

"Like an evil alien got stuck in my bladder and is using a farrier rasp and battery acid to attempt to break free and join the rest of hte aliens before they leave."

"IC consumes my life. I always have to be close to a bathroom. I have severe pain and pressure if I don't get to the bathroom.

Sometimes I don't make it. I have to worry about every thing I eat and drink or I will flare.

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A flare is pain,stinging ,burning,pressure.

Some times I will get electrics like shocks of pain. That when it's the worst!"

"Oh yes the pressure and pain is crazy. Even after I pee my nurse still drains 200-300cc off. My stomach is always swollen and is very painful. Even my grand kids know to be careful with grandmas belly."

"When I wake up in the mornings it feels like someone's been kicking the crap out of my bladder :( x" "IC feels like I'm broken."

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"Menstrual cramps, bloating, depression, newer and weird sensations every day as more and more the nerves and mast cells become involved so you have intesense neuralgia and itching which turns into hives.

My progression lead to what my doc refers to as big open wounds in my bladder and too many scars to count. Staying home, being isolated. Urinating constantly. All of this doesn't even scratch the surface."

"IC feels like a constant need to pee. It constantly has my body in a state of flight or fight; will there be a toilet? What will I do if I can't find a toilet? What if I can't find anything in this cafe to eat? What if I eat this and get a flare? What if I can't find the bottled water my bladder likes? What if I drink something else and I have to spend then next 12hrs sleeping on the toilet!? What if I have sex and then have to pee all day from the bladder spasms? What if I don't have sex and my partner feels rejected?

What if I am so tired that I can't function but my bladder insists it needs to pee all night?

What if I could work out at the gym and then sit with friends, enjoy a wine and gourmet food? I know the answer to this one...... months and months of flaring and being in pain...What does IC feel like? It feels like deprivation... it feels like depression... it feels like sadness... it feels isolated... it feels lonely and it feels FUCKING unfair!!"

"So very, very sad." " Like my vagina is dehydrated."

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"I started having symptoms about a year ago. But seems like the outer part of vagina is acting just like the bladder did:( the pain is beyond anything I have experienced ! Feels like I am being tortured alive!"

"A bowling ball with razor blades sticking out all around it sitting in your bladder while having lemon juice poured in it."

"Feels like a freshly cut jalapeno rubbed all over cuts on my vulva area. Have sharp spasm in vulva area and feels like my bladder is as heavy as a bowling ball."

"Rusty nail dipped in jalapeĂąo juice, then rolled in Kosher salt. Shoved into my urethra. Add a hot bowling ball pressing down on top of my bladder, and you've got an idea of a flare day."

"Angry gnomes playing bladder piĂąata. I don't have urethral pain but my bladder feels like a 10 pound weight that's contracting & being set on fire. It's miserable."

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"I feel like there is a razor blade in my bladder. When I move it slices a little slice in my bladder. It helps me to be in a lake just floating around. That way you can pee whenever you want and my bladder floats so its not slicing against the razor blade so fiercely. (Sounds a little harsh but thats how it feels)."

"It feels like I'm constantly giving birth from all the pressure, I have so much burning it feels like my bladder is on fire it's very very painful."

"A serrated knife" "Sometimes pulsating pain in my bladder to sharp stabbing pain in my pelvic floor area.

Sometimes feeling like I need to pee extremely bad but I've just gone. Sometimes the pain is so bad that I feel nauseous and weak. I also get lower back and hip pain and pain in my legs and arms. I feel like a zombie sometimes because of lack of sleep ( major brain fog). Depressed because I just want to feel normal .

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I'll let ya know if I think of more but this is how IC is for me. It does vary with good to very bad days."

"IC feels like someone carved the inside of my bladder out with a vegetable peeler, and they keep pouring acid on it."

"To me: IC is like having the worst UTI of your life and nothing makes it better or go away! No one believe you! Your a guinea pig to medicines bc what works for one don't work for all! Like having ulcers on ur bladder.

Sore, raw, crampy, life dampening agonizing at times pain! Tears me away from my two kids quiet often bc Momma can't keep up!

She's in pain!!!!!"

"Physically, it feels like a severe bladder infection and that feels like hot acid when I go. Just burns with a constant feeling of urgency. Emotionally, I feel like I'm being tortured and there's no escape - I'm so focused on my pain and discomfort that life is passing me by. I feel betrayed by my own body."

54

"Like someone cut my bladder and urethra with a razor blade and then poured rubbing alcohol in the cuts" "Intense rawness, like my insides are charred and mangled!"

"When I had IC, it felt like I constantly needed to pee. Peeing didn't relieve the pain. My urethra burned. My vulva hurt. My urine was hot to the touch when I voided. Ic felt like a constant need to urinate , with urination providing little / no relief. I peed every 15 minutes, whether I was awake or had to wake up from sleeping. Ic felt like urgency , pain , and pain during sex. I had IC from age 15-32."

"I was diagnosed with IC in 1998. The pain feels like a knife going through my bladder. I was going to the bathroom over 20 times from 9 pm to 1 am several nights. The pain and lack of sleep led me to seeing a urologist. His nurse cathed me in his office and the horrifying pain that ensued rivaled giving birth.

55

I was scheduled to have cystoscope in hospital under general anesthesia. After the surgery he told my parents and husband I had bladder cancer and less than six months to live. When the biopsy came back for IC my family told me about the cancer scare. I wanted to strangle the doctor for scarring my family like that. He said I had the worst bladder he had ever seen. Four other urologists would confirm this through the years. I participated in an IC study at Johns Hopkins University and they also told me I had one of the worst cases of IC they had ever seen. Throughout my almost 20 years from being diagnosed I have acquired more auto immune diseases. I now have IBS, Follicular Non Hodgkins Lymphoma, Lupus, scleroderma, sjogrens and connective tissue disorder. I'm was told IC opened the door to more auto immune diseases."

"Lemon juice in thousands and paper cuts"

56

" like someone is trying to pull out my vagina."

"It feels like Hell....you are a slave to your bladder, it controls every aspect of your life, it's like an insesant needy child. It tells you what you can eat, when you can sleep ( or not as the case may be). It tells you when you can or can't be intimate. It controls everything you think about all day, because your tirelessly trying to figure out how to stop the pain, or relentless urge to urinate. It tells you when you can or can't be intimate, how long you can drive, It's a lonely hard journey of doctors appt, with Drs who themselves don't understand the reality of this awful disease, they poke and prod and put chemicals in your bladder, that are so completely embarrassing and unnatural on a weekly basis. It stops you from being social, because you can't drink adult beverages, and it's hard to have fun in so much pain. And lastly it makes you ugly cry.. the kind of cry the hurts your gut, from the sheer frustration and endless fight for just a little relief, dare I say at times you wish for death, because the pain is so unbearable.

57

It spends all your money on doctors appt, supplements and medications that may or may not work. And lastly you live with hope and equal amounts of just giving up... IC is a very hard disease, because it's a disease nobody can see yet, it controls every aspect of your life. I pray one day for a cure, the hours spent researching this disease are endless. So theres also the time it takes away from getting on with living.. so yeah it feels like hell."

"IC feels like torture on a daily basis. As I sit and type this I have 10 pounds of fluid that has built up on me from a severe flare. I look at least 6 months pregnant and the rest of my body is swollen. It feels like someone is stabbing me on each side from the outside with a knife and it feels like there's a million little little evil creatures that have a hot iron pokes stabbing me from the inside bringing me to my knees or to the floor. It feels like someone is inside my body standing on top of my bladder like I am about to give birth to it. It's agony. It has robbed me of my life.

58

It keeps me up at night having to go to the bathroom 10 times or more so I never get good quality sleep. It is pain that I live with everyday that never drops below a 6/7 on the pain scale. It feels like a fire is always going inside my bladder and when I pee it feels like pure acid coming out and will make me yell out loud asking for the pain to please stop. It feels like acid or something acidic being poured on the cracks and lesions on my bladder at all times. It's made me a prisoner of my own home. I hate IC." "my i.c feels like thousands of razor blades cutting and slicing me from the inside" "For me it's like a bowling ball trying to force it's way out of my vagina. Constant cramping with stabbing pains and a hot poker into my vagina from time to time. I have a lot of pressure and pain in my lower back and tailbone area all the time."

"For me, an I.C. Flare feels like a thousand razor blades cutting away in my bladder while being squeezed in a vise."

59

"Mine alternates from pressure to burning. If the burning is really bad I feel it all the way to my rectum. When I am not in a full flare there is always some pressure/ache and slight burning. I have had vulvadynia symptoms in the past but luckily those haven't emerged in a while. It was bad though. Intense burning of my vaginal area.

Nothing helped. Tried ice packs. Burned really bad. I think amitriptyline calmed it down."

"For me, it comes on like a bad UTI...the worst kind you can imagine left untreated... yeah like that...then the feeling of contractions similar to child birth but with no easement of baby after or pain meds...then my intestines swell causing constipation and more pressure on organs. Then throw in a knife stabbing pain in the pelvic floor area and shards of glass zipping in your urethra every time you pee and even when you dont. Sitting upright the pressure on pelvic area is increased. And this lasts weeks.... sometimes months..."

60

"Mine is like having an ongoing severe bladder infection with searing pain like it's on fire, constant pressure & pelvic pain. I often wish I would just close my eyes n never wake up because it gets so unbearable." "feels like severe menstrual cramps and like my bladder is being sucked out" "It's weird most ic sufferers say they burn and it feels like someone's been cutting them with a knife. My doesn't feel like that. I just have the frequency really bad at night and quite a lot in the day. I get really bad pain in the mornings like someone's been kicking me all night and it's really bruised and aching like hell. When I used to have the severe flare ups.. no word of a lie, I honestly felt like I was gonna die. The pain was so severe I just wanted to die more than anything to stop the pain from continuing and never knowing when it was going to settle and stop.

61

I used to get rushed into the hospital a lot and no matter how much morphine they'd keep giving me on and off, the pain would continue mostly til late and night and then eventually I'd pass out. I'd have to have catheters in because the muscles in my bladder would not release my wee due to pain I had been in. I've been through some of the worst times of my life with this condition. I do believe it's one of the worst disabilities you can get. I don't have any friends anymore and my family make me feel like I'm just a moaner so I gave up tryin to tell them what it's like and educating them because it felt like it would just go in one ear and then out the other :( the only thing that has saved me from my severe flare ups is the contraceptive pill I am on. So I think hormones play a big part in ic aswell x" "I feel like my bladder is a small heavy bowling ball, that is constantly on fire.

Pressure, bladder spasms, sometimes pain with urination. Miserable."

62

"It feels like a monster is living in my lower half. And torturing me squeezing my bladder as hard as he can" "Sharp pains shooting up inside like fireworks going off. Passing water that feels like acid. Burning stabbing constant Day after day minute after minute. Just pure torture."

"Strep throat of the urethra and volcanic spasms" "Someone may have said this, but for me the nice answer is like having a UTI that NEVER goes away.

Not as nice answer is a bladder covered in cuts then filled with lemon juice or hot sauce. *shudders Also, I get pelvic pain that starts as a stab on my left side but often is as bad as labor pain. :-(."

"It feels like I'm dying,like I've been kicked in the lower back, a hot burning and stinging under the skin and a burning soreness inside my whole pelvis, then it feels like

63

I'm peeing fire. Sometimes it hurts so bad I expect to see blood but I don't. Before I got diagnosed I was convinced I had cancer, I figured this is it for me. It hurts that bad, I literally thought I was dying."

"Sharp knife pains up my vagina. Chronic right pelvic pain. Burning and frequency.

Painful intercourse. Depression."

64

"I don't know about others with hunners but with mine when they come back It feels like a sharp ass knife being stuck through my bladder. Then I have pains that run down the inner part of my legs depending on if it on left, right or dome part. If it on the dome of the bladder it runs down my buttocks down into my legs. Very painful.

I also have the crampy like feeling that makes your bladder feel like it being twisted inside out. Broken glass feeling. Feels like it being cut from the inside out. Feeling of alcohol being set on fire. Ic is painful enough by it self but having hunners, pfd, and other health issues just makes it so much worse, or so I'm told anyhow. I know it no picnic for me."

"Leg cramps when I hold my urine. .oh those are the worst!"

"It feels like no pain I have ever felt before, the type of pain that brings me to my knees, in a ball curled up on the floor praying that soon the attack will be over soon...it's the type of pain that brings fear and helplessness."

"Like my insides are raw and being scraped out, also extreme lower back pain. Kind of like someone kneeling on my lower back and tailbone ."

"Urgency and kidney pain. I don't have kids, but whenever women that have had kids complain about bladder stuff and I'm just like wait...you didn't have that until you were pregnant/after? It's like your body rebels against you. I feel like my brain wants to knows it's not normal, but my body still just does whatever it wants."

65

66

"When I was first diagnosed with IC I didn’t believe it. I tried to convince myself it was something else. I don’t have urgency or frequency. I don’t have pain with bladder filling, I just burn. The inside of my bladder burns(usually from food) and the inside of my Vagina and urethra burn ( usually from stress and sitting to long). In fact I actually stop burning when my bladder is full. Which led to a few unhealthy habits. I thought I could outsmart my bladder by only emptying half way( not real smart though) and I would hold my bladder longer than I should of to keep the burning away.(didn’t help me in the long run).

After several tests, ultra sounds and cystoscopy, nothing could be found, so IC was the dx. There are still days I want to believe it’s something the doctors missed, something that can be cured, but so far no luck. But, since food can trigger my burning, and baking soda, and DH aloe relieves the burning, It’s probably is IC. The very beginning of IC is the worst stage. Not only are you dealing with the pain but you’re also dealing with the emotional turmoil of how to live with it.

There was a moment,in the very beginning when I was in so much pain day after day for months that I wished it was cancer. Cancer can be seen, there are treatments. With treatment there is hope for a cure and if it not, at least you get to die and not have to live the rest of life in so much pain. (It was a shitty thought but I was so emotionally exhausted!) I am almost one year into this.

I’ve learned so much and am finally able to go a few days, sometimes a couple of weeks without burning. I feel like I’ve had to change everything about my life but it’s been worth it because i feel like I’m finally figuring this out."

How long did it take to become properly diagnosed with IC? "It took an unnecessary hysterectomy and 2.5 years later."

"Three months. Uro thought it was anxiety until he did the cystoscopy with hydrodistension."

67

"I believe I suffered all my life. Always remember being so tired as young as 4 to get up and go to the bathroom after many trips. I would eventually just be too tired and pee the bed. I was raised old school and would get a beating for that and had to change my own sheets at a very young age.

I remember going to school tired and defeated before I ever got there. School was very hard for me. I know now I was very capable to make very good grades but just too tired. Even with all my illnesses and screwed up family I still made C's and sometimes B's. But I strived for A's. IC just made me so tired. And i always had tummy aches. But finally my daughter the nurse figured it out when I was 50. She sent me to see a urologist who looked inside my bladder and seen ulcers and bleeding. A great amount of stress I believe elevated the symptoms to sever at age 50."

"Just a few months for me. Was agonizing waiting. Third doctor finally said ic, which is what we were suspecting. Had hydrotention to confirm.

68

My heart goes out to all of those that took much longer. Mine was about 3 months."

"10 years to get diagnosed. 12 for cystoscopy Probably 20 doctors or more" "It took them almost two years to diagnose me. I kept saying it was my bladder but they continued to make me feel like it was an uti or something in my stomach. They constantly made me have swobs/smear tests at the drs and hospital making me feel like I was sleeping around or something when I have never been like that and I was in a serious relationship with someone I really loved. I cried so many times and never understanding why they wouldn't believe me. Then finally met a nice dr and he seemed to know straight away and then sent me in for the cystocopy sorry can't spell it and then I was finally diagnosed with ic. Was hard to accept but a relief aswell to finally know I was right and the drs wernt the whole time :( x" 69

"Once I realized something was not right, I went to a different urologist and they diagnosed me immediately. I didn't get the best care back in those days, it was the 90's, so I would say in the last 5 years I have had the best medical advice and understanding."

"30 years. I started having problems at 6.

Diagnosed at 36 Or few years before. Totally fell apart at 38."

"I had been having symptoms and pain for a long time, symptoms started about 11 years old, no matter how many ER and doctors visits I went to no one could figure out why I was in excruciating pain, fast forward to a month before turning 29 my urologist did a test looking for spasms of my bladder but did not do the camera part, I begged him to leave no stone unturned and at my request he and my ob went ahead and did a cystoscopy and an exploratory laparoscopy, they found I have endometriosis and ic."

70

"The first doctor I went to presciped antibiotics, no culture. I went back to tell him I was still peeing a lot. His response, " Some people just have smaller bladders." I asked him if mine shrunk, and he just gave me a weird look. PA Carnes, I didn't expect you to know all the answers, but I did expect you to admit it, and refer me to a urologist --- you refused. You dismissed my concerns. I started having symptoms in early 2000's. I was diagnosed in 2006. In 2005, I met a great doctor who took me seriously. He was a primary care doctor. He started me on ditropan. No relief, so he sent me to a urologist who could help me. I was finally diagnosed in 2006. I still meet naive doctors. I had a gynecologist who told me, "I've never heard of pelvic floor dysfunction, so I don't think it's a real thing." Many with IC have PFD. I was so irritated. Sadly, even when we go to doctors, and use correct medical terminology, they still don't believe us."

71

"Im from northern Ireland and im still not officially diagnosed. Its been 4 years and still no treatment or cystoscopy just tears in the urologist room!"

72

"I was fine one day & woke up with a " dreadful UTI" the next. Treated it but it came back in 4 days, then 3, 2,1. Finally I was on Bactrim 2X per day & it wouldnt go away.

My Dad (Internist) told me he thought I had IC after only 7 weeks of these constant " UTIs." I had never heard of it. He flew me home over X-Mas to DC & sent me to see Top Uro there, but somehow I ended up seeing their new & very young Partner. He did a Cytso, but without Hydro, & said I was fine. Sent me home with high dose Pyrirdium & OAB meds, both of which I had seizures from & could have died. He then put me on Uribel & I had even worse seizures. Then Methanenimine, etc. Seizues from all & no relief. By this time I was 9-10 pain daily. I knew I had IC, but wasn't able to get health insurance to see a good UroGyno for another 9 mos as I continued to try to work full time & suffered greatly.

When I finally did, I was DX with severe IC, Hunners Leisons & Vesicular Vulvadynia.

And I was one of the lucky ones that was DXd within one year."

"Took over 10 years and 5 doctors.

Cystoscopy was done twice during that time but where I come from doctors don't know about IC. It was a blessing to come to the US, where I was finally diagnosed in 2016 after only a month. Back in Germany I had a female obgyn I went to once because I was in so much pain I couldn't go to school. I was 17 at the time. She told me to wear diapers and get over it."

"I've been getting uti's since I was around 12. In my 20's I started getting more uti's & finding it more & more difficult to treat them.

Now I'm 42 & have recently been diagnosed with IC through cystoscopy with hydro. I had to beg & beg to get my doctor to see a urologist even when i clearly had been having issues for years!! Not one doctor over all these years ever mentioned IC to me."

73

"I started having symptoms between the ages of 3 and 5 . I wasn't diagnosed with IC til I was 25 years old.

My pediatrician told my mother that it was all allergy related so I was put on a very strict diet so as a child I never got to enjoy the little things like candy because to much sugar would irritate my bladder . I actually started training my bladder at this age without even knowing that it would help my bladder. I was so terrified to use the restroom because of the burning I would wait til I was totally full and after going I would drink tons of water because it made my bladder feel better after about an hour after urinating. I was never referred to a urologist til I was 25 years old. Craziness!!"

"It took about 4 to 5 years. I was given antibiotics when I didn't have a UTI. I was exrayed for kidney stones did not have them. I was told I had overactive bladder.

Finally my first urologist I had at 17 diagnosed me ."

74

"About 15 years, it was when I finally sought out a urogynecologist was when I got the diagnosis."

"I have been treated for injured discs in my lower back for the past 6 years. I had a uti that I didn't treat and ended up septic and the infection travelled into my kidneys i was admitted to hospital and treated with IV anti b I discharged myself against med advice on day 3 . I ended up back in 6 days later very ill from sepsis , the hospital didn't have a bed so I was transferred to a private hospital where I had an amazing young doctor who said something more was going on so he called a uro who did cysto and hydro biopsies showed IC . I'm not sure how much of my pain was my discs and how much is IC or when my IC started but I know I am lucky to have been sent private and gotten those 2 doctors who looked further. I was diagnosed 12 weeks ago, currently on elmiron with no improvement due to see uro mid august for another cysto and hydro."

75

"One visit to the gynecologist for constant pain in my pelvic area and was checked and I was fine. She had a clue that it was IC and referred me to my urologist and he done a test in office then a cystoscope and confirmed I had IC." "I informed my new doctor I might have IC. She said inter... inter... what what is that?

Needless to say I felt incredibly helpless. I'm currently waiting for an opening with another doctor."

"My first Uro I've seen right away told me about IC and even told me to check the IC Network. I was then scheduled to have cysto/hydro immediately and confirmed IC. However, it's been almost 8 years now and my symptoms are worse than ever!"

"I went to Obgyn with symptoms of frequent urination and feeling like I couldn't empty my bladder. They diagnosed me with yeast infection and bacterial vaginosis although I had no symptoms other than bladder.

76

So the medicine made it worse and also had one reading of a bladder infection in the course of going back and forth with yeast and bv and trying different medications for each over a course of 3 months or so.

Needless to say I guess my vagina has a weird ph :) anyhow I finally switched Obgyn's and the new Obgyn said since I was showing no symptoms of bv or yeast I needed to go to a urogynocologist. Right away she suspected it was ic and we did a cystoscope to make sure. After all those stupid meds that weren't doing anything but making my ic worse and life miserable cause I thought the medicine just wasn't working on me .... I started following the ic diet at first instead of ic meds and my bladder significantly improved almost immediately."

"Symptoms started after a uti in high school.

Repeated "uti" symptoms with no bacteria and my Pediatric nurse practitioner (male) diagnosed it almost immediately. No formal testing only ever went off of symptoms.

77

Current urologist has also not recommended any sort of testing to confirm or deny as definitely IC." "It is a process over a long period of years.

You need to do all the available research, use the IC website, the IC blog and find out what foods set your flares off. Stress is also a trigger. Get on the IC diet. There is no miracle one cure..everyone reacts differently to all of the meds prescribed. First you rule out a UTI with tests and then do all of the above. The doctors don not know much about IC yet and there is limited research going on. Who has ever heard of "a Charity Walk/Run for IC"? Its not happening so you have to be your own" "It took many agonizing months, but still less than a year. I had a hysterectomy and developed IC while recovering. Needless to say, I felt that I never recovered. My OB suspected it and referred me to a uro but I couldn't get an appt to see him for more than 6 months down the road.

78

I begged my OB to refer me to another uro which he reluctantly did. I had a cysto and was diagnosed about 9 months after my hysterectomy. Bladder distentions were done with no luck. No meds were prescribed. I finally switched to the uro my OB originally referred me to, but he couldn't help. He referred me to Vanderbilt university and I finally got some treatment and meds.

They switched me to another uro-gyno...doc #4, but no significant improvement. And, that was too far away. My PCP, who happened to be a female OB, treated me for a while, then when nothing was improving she referred me to a gynourologist who was a life saver. Doc #6 and 4 years later, I was prescribed meds that worked as well as physical therapy (biofeedback and kegal excercises) that greatly improved my IC. My IC is now under control with diet & meds, but I have recently had some flareups. I haven't been to a doc for IC in over 3 years due to moving to another state and I desperately need to get to one."

79

"I can remember being little and having the burning urethra symptom. That is my main issue. My mom would dismiss it has a living in Florida issue (think heat, sweat, and life in a bathing suit). I always thought it was fairly normal to be prone to UTIs living in Florida.

I finally had a doctor i was seeing for endometriosis tell me at 34 that it wasn't normal. During my hysterectomy a few months later she scoped my bladder and saw how raw I was."

"I think it only took 1 year or maybe only 6m after I sought out a Dr's help. My doc at Fort Carson was pretty cool & smart. I had to see a general doc several times 1st and they put me on meds for peeing in your pants -- the only symptom I didn't have! But then I fought to see an actual urologist. I think I was one of his only female patients (mainly saw soldiers and vets) so my issues were actually "exciting" for him as they were different. Made him use his brain, so he researched IC a lot for me. But, I should've asked for help years before.

80

So if you're asking how long it took it get an IC diagnosis from when my symptoms started, I'll have to say several years. I look back on my childhood and think I had some symptoms then."

"It took me about 4 years or so to get diagnosed. Finally went to a teaching hospital where they diagnosed it. I remember they did a hydro-distention without being put under and I was in so much pain. I will never forget that, those crazy people."

"4 years of being told it was in my head/ just an overactive bladder/ sent from one doctor to the next/ had laptoscopy to remove endo that was not even there/ normal biopsies and cystoscopies/ ... until I was diagnosed by a urogyn at a university who dug into research papers. the diet and most other helpful tricks came from my own online searches."

"I guess in a way, I am a lucky one. It only took two doctor visits.

81

First to gynecologist who detected blood in urine. Two weeks later to the urologist when pain was excruciating. He found ic and Hunners."

"My story is different from others. I been having bladder issues since birth. Two surgeries before I was a year old another when I was not 3rd grade.

After I had my 3rd child I kept having repeat infection some real ones others not so she sent me to a urologist again. That when I heard the word i.c for the 1st time. After many test and a surgery I was DX then with a modern case. A year later I was having more pain. Dr didn't want to listen at 1st finally he decided to go back in to look. I had hunners. Mine progressed."

"In some ways I guess I'm lucky to had found a urologist when I kept having problems to know what it was. Not everyone so lucky with that, but I'm unlucky to had been fighting with my bladder since birth."

82

"My appendix ruptured in April of 2009 afterwards I began getting multiple urinary infections (so I thought) my family doctor would give me antibiotics at least 4 to five time a month not including hundreds of trips to emergency rooms and psychiatrists. In 2012 I was finally sent to a urologist he looked at me and said well I think you are addicted to narcotics and I don't prescribe narcotics every woman gets urinary infections some more than others. Mind you yes with every emergency room visit I was filled with narcotics and antibiotics and send home with prescriptions. So yes it made me look like a pill head having multiple pain medication prescribed by different doctors bc I was trying to seek help and no one knew what to do but give me medicine to cover up my symptoms. Fast forward to 2016 I hadn't had a period in 10 months and was sent to an amazing gyno, I had so much scar tissue and cyst he and adhesions he done surgery in August of last year to remove all the adhesions and cysts.

83

During my recovery I started hurting one night in my vulva and the pain just kept getting worse and worse I couldn't move I couldn't sit I couldn't walk I just screamed in pain my husband rushed me to the e.r at the hospital I had surgery at. The e.r doctor came in and had the nurse insert a catheter the pain from that made the other pain so much worse the doctor yelled in my room take it out of her now. They fan tests urinalysis which showed some bacteria but not a lot to cause the pain I was in. This ER doctor pushed on all through the night and kept me semi pain free."

84

"He came in at 4 a.m and said Mrs pearcy I don't know what is wrong with you but I know the best urologist around and I have called him and he will be here at 7 we are going to sedate you out of pain until he comes in. I was woke up at 7 by Dr Brown the sweetest older doctor I have ever met.

He says I know what is wrong with you I am going to do a treatment on you and if it takes most the pain away we will go from here if not we will find a reason to all this.

He did the DMSO treatment and I felt instant relief. The pain wasn't all the way gone but my thinking I was crazy the past several years was. I always knew their had to be a reason and I wasn't crazy. I literally started believing I was crazy or it was in my head I am now not completely pain free all the time but I do have some of the best days I have had in years. Today has been a bad day but I know that I'm not crazy so that helps lol. I wish I could afford the DMSO treatment like I need it but I can't so I take my elmiron and deal with the pain when I have it."

"It took me almost 20 yrs of going back and forth to different doctors. And I'm only 33.

And I've been through all the treatments and now I have the interstim. And it doesn't work for overactive bladder. I have that on top of ic."

"Took 5 years and lots of surgeries and misdiagnosis before getting the diagnosis!!"

85

"I always had symtoms as a kid . My parents took me to many doctors. My parents already list a child to kidney disease and when I started to complain they first thought it was for attention but then I kept saying it hurt so they were persistent. I had every test and nothing showed up. They never thought to look into the bladder. I started to complain at 4 yrs old and I complained more and more as I got older. So as I got older and as I went through life it was worse and finally I became a X-ray technician I was working in a hospital and one of the doctors said to me you go to the bathroom to much .

He told me to come into his office which I did and he tried to scope me in his office and he explained to me about what he thought was wrong with me. He did a biopsy meanwhile I was 25yrs old I thought everyone went to the bathroom 50 times a day. What I didn't expect was for him to find what he found was IC and that was the beginning and end of my life. The next 20yrs of my life were painful . Once he took the biopsy it took 5 yrs to get my body back where I didn't have excruciating pain.

86

So all in all it took along time to get the diagnosis but it took a week to find out what I had. And it's been hell since then. He immediately saw those Hunners lesions so it was obvious to any urologist that would of found my IC if they would of scoped me anyone would of found it. I don't know if they would of found it as young as 6yrs old because no one scoped me."

"Good job for writing this! I love writing!

After reading this all- I think my story really relates to what you're writing. I'm 18 years old, only got diagnoised 4 years after my first symptoms. why? firstly I was only 12 when it started, so most doctors wouldnt think a healthy young girl could get sick. my school thought it was all in my head and send me to a psychologist only for her to say its not. a stupid doctor thought it was just a really bad case of Overactive Bladder and putted WAY too much BOTOX to an 14 years old girl in her bladder, which made me not to be able to pee for 1 week and troubles with peeing for 2 years after. all because theres no awareness here (and/or at all)

87

about this disease, and not understanding that IC can happened in any age, to anyone.

Found out I had IC through Cystoscopy ."

"My bladder has the Hunners Ulcers, it ripped when they went in surgery to do a stretch. My doctor won't even do a cystoscope, afraid of it ripping. I can't tell you how bad the pain was. I was in the hospital for a week and a catheter for six weeks. He has never had a patient, so advanced stage. I went un diagnosed, for over ten years."

"Almost 2 months ago I went into Dr. I was peeing 45 times within a day. And that's only 12 hours. Not including night time. They checked my urine and of course nothing and said there is nothing they can do. I cried in frustration and made a comment about suicide as in that's the only option to make it stop. The nurse was going to admit me. I actually became embarrassed. They called my husband to come get me. I started apologizing to them.

88

I shouldn't have been embarrassed. There should have been a remedy to help me! It's awful we feel like this for so long. Diagnosed 9 years ago."

"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.

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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."

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"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 them, 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 group 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."

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Yeast and IC

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I am adding this chapter because I feel that Candida overgrowth is a huge factor for Women with IC . We just assume the pelvic pain, vaginal burning, bloated bellies, and painful urination we all experience is from our bladder.

When I'm in a full on IC flare my symptoms are a severely bloated belly, vaginal burning that feels like your vagina has the worst sunburn ever, pelvic pain that feels like shards of glass and acid are swishing around in your bladder, and my labia is very tender, sometimes making it even hard to sit. I've always just assumed this pain was all from my bladder because that's what we've been told.

After a recent visit for my yearly Gyno appointment , a lightbulb went off in my head. Two years ago, when I had these same exact symptoms, I had a vaginal culture done at my PCP's office. The tests came back positive for yeast. I was angry.

How dare this Doctor tell me this horrible pain I was enduring was all from a yeast infection.

Well, once again in the middle of what I though was an IC flare, I have tested positive for yeast.

The symptoms are pretty similar, or at least I thought they were. For years I have suffered with ear infections, itchy ears, stuffy nose, and excessive mucous . I have had severe fungal infections in my ears, so bad that I'd wake with green mucous on my pillow, my ears so clogged that I'd have to suck the mucous out of my ears just to hear.

I am constantly clearing my throat, and can't remember the last time I didn't have post nasal drip.

The symptoms for Candida overgrowth are as follows: Skin and nail fungal infections, such as athlete’s foot or toenail fungus Feeling tired and worn down, or suffering from chronic fatigue or fibromyalgia Digestive issues such as bloating, constipation, or diarrhea 93

Autoimmune diseases such as Hashimoto’s thyroiditis, rheumatoid arthritis, ulcerative colitis, lupus, psoriasis, scleroderma, or multiple sclerosis Difficulty concentrating, poor memory, lack of focus, ADD, ADHD, and brain fog Skin issues like eczema, psoriasis, hives, and rashes, itchy ears Irritability, mood swings, anxiety, or depression Vaginal infections, urinary tract infections, rectal itching, or vaginal itching, vaginal burning Severe seasonal allergies or itchy ears Strong sugar and refined carbohydrate cravings I have every single symptom on that list and never once though it could be from yeast.

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I forgot to mention that I have to take prescription eye drops because if I don't I will have horrible red eyes with a discharge that looks just like pink eye, but isn't. I have been to an Ear Nose and Throat Specialist, an allergy specialist, and countless trips to my PCP and not once has anyone checked me for a yeast infection.

I think we just assume that because this person is a Doctor, they know what we have and what treatment is best for us. That is not always the case.

I have been on countless antibiotics, sometimes for three months straight. Now we all know that antibiotics can cause yeast overgrowth, so I was just feeding the yeast basically, making my body worse when I was supposed to be making it better.

As I mentioned before, I have just recently tested positive for yeast, and the Doctor asked if I wanted an antibiotic , to which I replied no. I am determined to fight this Candida overgrowth naturally. I am taking Ginger root, Tumeric, fractionated coconut oil, and Organic Apple Cider Vinegar. Yes , apple cider vinegar.

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Now most women I talk to are scared to death to follow my advice on the ACV, but those that have are experiencing wonderful results. ( 2 tablespoons of Organic Apple Cider Vinegar with a full glass of water , 3 x daily). It must be organic and say " from the mother" on the bottle. Make sure to shake well before each use. I will be the first to admit that it tastes horrible. I slam the two tbs down like a shot of liquor followed by a full glass of water. If I'm having vaginal burning this usually takes care of it.

Not only is ACV a natural antibiotic, it also has anti- fungal properties and alkalines our bodies PH. So, once again this leads me to believe that my vaginal burning is not from my IC, but from Candida overgrowth in my body. Why doctors don't check us for yeast more often is beyond me. It's something we are not very educated on. It's not a topic that's brought up often, in fact I feel it's a taboo topic. I mean really, when was the last time you were brought up in a conversation about yeast infections?

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This information, along with my recent diagnosis leads me to believe that our symptoms are not only from IC, but rather Candida overgrowth in our toxic bodies. *The following is from the IC Network "There are a lot of thoughts concerning the connection between Interstitial Cystitis (IC) and Yeast. We are sure that many patients with IC complain of yeast infection symptoms and when a yeast infection is present it can often cause an IC flare. It is not known whether yeast is a possible cause of IC. Nonetheless, it is one aspect worth informing patients about Yeast produces a toxin, which is a bladder irritant. It doesn’t matter much where the yeast is in a patient’s body for the toxin to bother their bladder. Thus yeast infections are an aspect of IC that bother many and can cause bad flare ups. Most IC patients have had numerous antibiotics so we know that a number have yeast.

I am not directing this only to women, although women are often more aware of their yeast infections. I do know some men diagnosed with IC that were helped by probiotics.

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Some points of avoiding yeast may pertain only to women. Everyone should look into the possibility of yeast within their body, affecting their symptoms.

One possible theory as the cause of IC is that after yeast infections (which we know women get many of) the yeast, or the toxins the yeast emits, imbed themselves deep into the bladder making them undetectable. This theory is not given much merit anymore as far as yeast alone being the cause. It does stand though that yeast may give an allergic reaction that causes inflammation in some individuals.

The toxins released by yeast can be a problem if there is too much yeast anywhere. It can bother some even if the amount is normal. For that reason, treating yeast can be an aspect of treatment for IC that any patient with IC may want to try at some point.

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Even if it does not help a patient’s IC to treat yeast when they do not have a yeast infection (vaginal yeast), when a vaginal yeast infection is present it can cause a big flare up.

For me, a yeast infection causes me to have burning during urination before I notice any other symptom. It also can cause the pelvic floor muscles to spasm. Together that can mean a lot of pain. Reports from other patients have called a vaginal yeast infection their worse flare. Read the poll on Yeast Infections in IC patients .

A yeast infection can cause urgency, frequency and urethral burning. It may also cause fatigue, abdominal bloating and gas.

With that list an IC patient has good reason to try to prevent a yeast infection!

So why do so many women with IC get yeast infections so frequently that they are on constant treatment for them? The frequent antibiotics may be one factor. The problems that each bacterial and yeast infection causes us, may make us seek more treatment than average. Many of us seem to have a weakened immune system.

Also since hormonal imbalance seems to be another factor in IC, it makes women more vulnerable to yeast.

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For that reason just being aware of the different options in treating yeast infections is important for many IC patients.

• Probiotics • Nystatin • Diflucan • AZO Yeast • Boric Acid and Aci-gel (These are only IC friendly inserted in the vagina when there is a yeast infection and can be a risk otherwise) Herbal anti yeast supplements such as Garlic or oregano oil.

Probiotics are friendly bacteria. Most people eat them in yogurt to help yeast infections.

They are a great way to avoid getting a yeast infection and can be bought in supplement form. They come in many different strengths, and the refrigerated nondairy kinds are considered best. It is important to mention them with IC patients since because antibiotics usually kill friendly bacteria probiotics are a necessary part of treatment.

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They can prevent you from exchanging a bacterial infection for a yeast infection. You may notice that I did not mention Monistat.

Most non-prescription vaginal creams are not IC friendly and are irritants for IC patients.

Many patients with IC are vulnerable to other problems as well and for that reason I think it is important to mention that it may not be a yeast infection. Other things that mimic a yeast infection such as bacterial vaginosis, vulvodynia, and vulvar vestibulitis.

IF you are certain it is a vaginal yeast infection and you are still desperate for more help with symptoms there is some self-help that may work. Yeast likes warm, moist, places so keep dry and try ice.

• Try 100% cotton underwear • Avoid hot baths • Dry well after baths, showers, sex, and such.

• Wear skirts (with no underwear while at home).

• Change towels daily.

• Avoid tampons 101

• Cleanse the vaginal area morning and night.

• Always use unscented white soap to cleanse.

• Don’t wear tight clothing

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• Avoid yeast, sugar, refined carbohydrates, and colorings in your diet.

• For the oral thrush change you tooth brush There are many aspects as to how yeast affects an IC patient’s life, more so if you are a woman. Everyone should pay attention to yeast in their diet, and may want to try yeast treatments as part of their IC treatment.

Yeast has been a big aspect of IC for both men and women. Since yeast can be anywhere in the body and still affect the bladder, if you have increased symptoms when you eat dairy, yeast, sugar, or refined carbohydrates, yeast may be increasing your symptoms. If you have a lot of gas, be a sign you have yeast in your body. Some of you may already know that yeast is a problem for you. Cleansing your body of yeast is hard but something you may want to think about."

So next time you are having what seems to be an IC flare, I advise you to ask for a yeast culture.

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My Journey With IC 2013 Turning forty wasn't that bad. I was in really great shape, and it was the first year that I wasn't trying to reach my goal weight, as I was already there. As a recovering Anorexic (that's going to be my next book), I'm usually frantic about reaching a certain weight before my birthday. #itsjustanumber I was actually pretty happy with myself for once in my life. I also suffer from " body dismorphia" , so I was pretty proud that I didn't think I had any self- improving to do.

I had my first mammogram when I turned forty. Breast Cancer runs in my family and my Mom had been pressing for years for me to get a mammogram. I was really nervous. I had always heard that mammograms were painful. I was also worried because I had had breast augmentation. I didn't want my " girls" to pop. I'm happy to tell you that mammograms are a piece of cake. It didn't hurt, and my " girls" didn't pop! #checkyourboobies 104

I remember the exact moment when I first felt the pain. I was cooking dinner on the stove when I felt horrible pain and pressure " down there" . It felt like something pushed down on my cervix and was trying to come out. The pain was also in my inner thighs. It was very intense pain, something I had never felt before. It lasted about five to ten minutes and then it was gone.

I finished cooking dinner, and had to use the restroom. There was blood when I wiped, so I figured I was just starting my period. I didn't think anything of it, and continued with my night.

I was bleeding a lot heavier this period, I had always had light, three day periods.

After five days of bleeding I was a little concerned. I went to see my Nurse Practitioner who said I could be having early signs of menopause and she sent me home.

By this time the bleeding was getting heavier. I was starting to have pain in my lower pelvic area , and the blood was now a constant steady flow.

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I called my NP, and she said to go to the ER. They did an ultrasound at the ER, and they found nothing. I then made an appointment with my Gynocologist. She took a culture and sent me to have an Ultrasound of my Uterus. Later that week she called and said everything was fine, but I had Vaginitis. She prescribed an antibiotic.

The bleeding continued, and by now I was on week four of bleeding, along with pelvic pain. I decided to get a second opinion, and saw a Gyno from the same office. He prescribed me a pill to stop the bleeding which didn't work. A week later I was back at the Doctors. We decided I would have Uterine Ablation to stop the bleeding. I had already had my tubes tied and wasn't going to have any more children, so this seemed like the right choice.

The ablation seemed to work. The bleeding had stopped and I recovered well.

The next two and a half years were followed by many UTI's. Along with the UTI's , it felt like my Vagina was on fire. It literally felt like there was a hot poker stick up there.

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My marriage started to suffer due to the fact that I never wanted sex. I just thought it was all because of Menopause, but honestly, who wants anything up there when you are on fire? Not this girl! #firecrotch

2015 By now the hot burning poker stick from hell was pretty much a constant thing. I couldn't take it anymore and went to see my NP. Once again, a UTI, high white blood cell count. I was put on an antibiotic , Cipro, which was pretty much the only one that would work at this point. I was fine for a couple weeks, and then the urgency and burning was back full force. I went back to the Dr and again, had a high white blood cell count. Once again, he chalked it up to being Menopause. Early menopause does run in my family, so I agreed and went home.

I guess I just got used to the burning. It was like that nagging bee that just won't leave you alone. You learn to live with it.

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I read up on Menopause , and learned about Vaginal Atrophy. Vaginal Atrophy happens when the vaginal wall thins during menopause. It can cause a burning sensation. Once again I was convinced it was just menopause. I did my normal daily routine, and kicked up my workouts because they made the pain go away.

I couldn't help but think I had something else wrong with me. The pain wasn't coming from my uterus, or my stomach. It was directly where my bladder was. Sometimes I would get really bloated and I could feel a bubble sensation in my bladder. Other times it felt like there were little rocks in my bladder. I decided to go back to the doctor. I told him all my symptoms and he kinda looked at me like I was crazy. Hell, I was starting to think I was crazy. He prescribed me Vesicare and off I went. The Vesicare did nothing. I was back in the Dr's office the next week. My plan was to go every week until somebody did something for me.

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I go to a walk in medical facility owned by my favorite Dr in the world , Dr James Princeton! He is amazing! He listens! On this particular day Dr Princeton was not working . I was going to see a new Dr, a Woman this time. I decided I was going to be very detailed with her hoping maybe, just maybe, she would be able to help me. We do have the same girl parts. I asked her several questions , such as could it be from using " toys" in the bedroom, or maybe hurt from something new my Husband and I had tried.

What I really wanted to tell her was after a night of drinking, my husband and I had tried something new in the bedroom that I thought may be the cause of my problems.

To this day I have never told any of my doctors because of embarrassment . What I didn't know, was the damage this particular tryst would cause.

She laughed , and said no. She asked me if I wanted her to do a Vaginal exam, and I couldn't get my clothes off fast enough. I have never been that excited to have a vaginal exam.

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She took a culture , and we discussed putting me on a hormone creme called Estrace which is supposed to help with Vaginal Atrophy. Ughhh, back to the whole Menopause game.

First of all, it is not fun putting a creme up your " hoo ha". It feels like when you were a kid and your mom shoved Vicks up your nose. The Estrace made me cramp a lot, but I kept using it hoping for a miracle.

Three days later my nurse called and said the culture results showed I had a slight yeast infection. My first thought was " of course I do, I've been on a zillion antibiotics." I was told to stop using the Estrace, that the pain was just from the yeast infection , and to go back on antibiotics.

First of all, sorry if this is tmi, but I had no vaginal discharge. I had been having this pain for two years now, how the heck could it be from a yeast infection? Of course I googled yeast infections. #gross

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2016 Knowing that I didn't have a yeast infection, I still took my antibiotics. When I finished, and the pain was still there, I went back to the doctor. I was averaging a trip every two weeks. I was beyond frustrated.

My regular doctor was there and I must of looked pretty bad because he actually looked concerned this time. He referred me to a Urologist, and said I needed a Cystocopy.I went home and waited for the phone call.

When the call finally came, I was beyond excited. I just knew they would be able to help me. I was in full flare by now, blood when I wiped. It hurt to sit down, it hurt to lay down, it even hurt to stand. I practically lived in the bath tub. The soonest they could get me in was the following month. I was happy and sad all at once. Once again I felt defeated. I drank gallons and gallons of cranberry juice hoping it would help. It's funny how they tell you to drink cranberry juice for your bladder. It's actually not a good thing to drink if you have IC, I was just making my flares worse.

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The day of my appointment I was so excited. It was like Christmas. I went in , filled out my paperwork, and waited. As I said before, when you are in a flare it hurts to sit. I sat in that waiting room holding my pee for an hour and a half. I was in agony, but still excited to get my Cystoscopy. I practically peed myself when they called me back. I gave my urine sample, and a little more, ( wanted to make sure they had enough) and went to the exam room. I sat there by myself for at least another 30 minutes staring at the cystoscope. That thing is huge! I was getting very nervous now with that thing staring me in the face.

The nurse finally came in and said I was in the wrong room. She moved me to another room where I waited a good 20 minutes more. Finally the Dr came in and said we would not be doing the Cystoscopy today, but instead a Vaginal exam. I cussed him out in my head. Again, felt totally defeated. He said he needed to rule out any uterine problems. Everything checked out fine, like I knew it would.

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I was given my next appointment which was a whole month away, and my pre-op instructions.

I broke down in the car crying and called my husband. I just wanted to feel better. Why wouldn't anyone help me?

My pain was really bad at this point. I ate Pyridium like it was candy. It was the only thing that remotely helped. I read the pre-op papers over and over and researched about the Cystocopy procedure. I googled anything that had to do with the bladder. I bought some herbs that were supposed to help, praying for another miracle. One of my clients recommended that I try a powder called Clear Tract. #thankyourosalind . Of course I immediately ordered it. Clear Tract is 100% d-mannose in powder form. You put a scoop in your water , mix and drink it.

It had no flavor whatsoever, and it seemed to calm my flare. The hot poker stick from hell was still there, but not burning so hot anymore.

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My appointment day came, and my husband went with me this time. Once again we waited about an hour in the waiting room, before being called in for my urine sample. #waitingsucks I gave my urine sample and we waited in the exam room another 20 minutes, when the nurse came in. She asked me if I was currently being treated for a UTI. I looked at her like "duhhh." She asked if I was taking Pyridium, and I said yes.

Ten minutes later the doctor came in and said he couldn't do the Cystoscopy because I had too many things in my urine. I teared up and looked at my husband. I had followed the pre-op papers, made sure I hadn't taken any medication that was on the list. I was obviously upset, almost crying. I told him Pyridium and clear tract were not on my " do not take" list. He said we'd have to reschedule. Not only was I upset , but my husband was too at this point.

We walked back up to reception to schedule my appointment. While the receptionist was trying to find an appointment my husband and I discussed just going somewhere else.

I told the receptionist to go ahead and schedule my appointment, but I may just find someone else. She handed me my appointment card. Once again, another month . Another month in pain.

I immediately started looking for another Urologist, like literally while we were driving home. I found one that a client of mine was seeing and called to schedule an appointment, but I needed a referral. Ughhh, that meant back to my regular Dr. I waited another two weeks for the new Urologist to call back. When he did call, we did a brief over the phone consult, He informed me that he didn't treat bladder pain like I was having, but rather just bladder incontinence.

I decided to go ahead and keep the appointment with the first Uro, and go ahead and get the Cystoscopy. I made sure I had absolutely no meds in my system so we wouldn't have any reason not to do the Cystoscopy. This meant no Pyridium, which I was basically living on. Needless to say, it was a long two weeks.

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The next two weeks were miserable. I took no medication whatsoever. I was in horrible pain. It hurt to sit, it hurt to stand. I just wanted it to go away. The burning was comparable to a hot poker stick touching my cervix. My bladder was spasming so bad that it felt like a heavy rock , like the muscles were all " balled" up.

I called to confirm my appointment for the following week. There was no way I was letting them out of it this time. We confirmed , and I felt such great relief.

Finally, the day had come! I was going to get my Cystoscopy. I was going to find out what was wrong with me . YES! I signed in at the front desk and waited.

I knew the wait would be long . This was my third visit here and the wait had always been up to an hour. I paid my co-pay and sat down. My name was called and I was told to go give a urine sample , which I did. I made sure this time to wipe extra well down there so no germs whatsoever could interfere with the results.

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I went back to the waiting room, and waited. My name was called again, and I followed the nurse down the hall, but this time was different. We passed all of the examination rooms and entered what seemed to be an office. I was told to wait. I was confused. Scared. I thought they had found something bad in my urine. The nurse came back and closed the door behind her. I was then told that the Dr was not going to do my Cystoscopy because of the way I overacted at the last visit. OVEREACTED? Obviously they don't know me because THAT was not overreacting. That was pure defeat. I was in shock. She said you may please leave now. I stood up, looked at her in shock and walked back down the hall.

I had so many questions. Why would they have me pay my co-pay, give a urine sample , and then call me back just to tell me they were letting me go as a patient? I broke down in tears in the car. I called my Husband sobbing. I was ready to end it all right there. I'm not going to lie. Ending my life seemed pretty good at this point. There was no way I could live with this pain anymore.

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It took all I had to keep my Husband from driving to the Doctors office. Needless to say, he was furious. I cried the whole way home. I was back where I had started. I immediately went online the second I got home. I filed a complaint against the Doctor . I posted it on the medical board and the Better Business Bureau . I then received an email from the BBB. It stated that if the Doctor felt I was making false accusations, they would not be able to post the complaint. Well guess what? It was posted, and is still on there!

The next day I was back at my PCP. I had found a Urologist here in town that had great recommendations. My PCP sent over a referral and it was accepted. I wasn't excited this time though. How could I be after what I had been through? I felt like nobody was taking me seriously. I felt like they all thought this was all in my head. I know my family was tired of me complaining. I was starting to think this was all in my head. I had another month to wait, so I went back on my Pyridium . #thankgodforpyridium 118

I spent my time researching every known bladder disease I could find. I stumbled across something called Interstitial Cystitis. " Interstitial what?". Every single detail was point on with all of my symptoms."Could this really be it? Did I find out what was wrong with me ?". #lookwhosthesmartone I was neither scared or excited to see the new Urologist. I will say it was a much cleaner facility than the last one. I had a good feeling. I gave my usual urine sample, free of any possible altering medications.

The doctor came in and we discussed my symptoms. He prescribed me antibiotics, pyridium, and scheduled my Cystoscopy .

I'd have to wait another month, but I felt like I was finally going to get some answers.

A week before my Cystoscopy , I went to the lab to give my blood and urine samples.

We all know that waiting sucks. All I could think about was my Cystoscopy . I was afraid that I might have Cancer. I had been having this pain for three years. I was totally convinced that I had Cancer and was going to die.

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The day of my Cystoscopy I went alone. I honestly didn't think it was going to happen so I told my husband not to bother coming. I was convinced that the Doctor would say he found something in my blood or urine and that he'd have to reschedule, but he didn't.

Now at this time, I didn't know there were two types of Cystoscopy's . We were doing an in office procedure without sedation. Had I known this at the time, I probably would have been more nervous.

I changed into my gown and emptied my bladder. I then laid on the exam table and the doctor came in and applied some numbing cream. Knowing something is going to go up your urethra is petrifying, not only for someone with IC, but for anyone.

The doctor came in and explained what we were going to do. I pretty much already knew. I had been googling it for months. He asked if I felt numb, and I was. Before I knew it, he slipped in the cystoscope . It did not hurt as bad as I had expected. The pressure of the solution filling my bladder hurt. It filled so quickly, I felt like I was going to spasm.

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Holding in the solution hurt even worse. I don't know how to relax. Everyone that knows me, knows I am a very tense person.

I'm pretty sure every muscle in my body was tense while I was trying to hold the fluid inside my bladder. It was over pretty quick, thank God. Like I said, it didn't hurt, it was just very uncomfortable. I was told to empty my bladder in a bedside commode ,to get dressed and meet the doctor in his office.

I waited nervously for the doctor. He came in, sat down and said, " Well, you have Interstitial Cystitis." I remember thinking, " No shit Sherlock!." I seriously waited all these months for him to tell me what I already knew? What a waste of time! He said he'd like to schedule surgery. " Yay!", I thought. Now he has my attention. Finally someone was going to help me. I was going to have fulguration for the Hunners Lesions, and hydro- distention to help my bladder hold more urine. " Hunners lesions? " Hmmm, I'd have to google that when I got home. I wasn't expecting that. On the way out he handed me some pamphlets and told me about the IC Network.

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I had another month of waiting , another month on antibiotics, and another month of pain. I was nervous , but ecstatic at the same time. " I'm going to be fixed. I'm going to be pain free." #fingerscrossed "Fulguration. From Wikipedia, the free encyclopedia. Fulguration, also called electrofulguration, is a procedure to destroy and remove tissue (such as a malignant tumor) using a high-frequency electric current applied with a needlelike electrode."

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"Bladder distention is a procedure that attempts to increase a person's bladder capacity and block pain signals being transmitted by nerves in the bladder, and is used to treat a painful condition called interstitial cystitis (IC), or chronic inflammation of the bladder wall; this condition has no known cause or cure."

"Hunner's ulcers, also called “Hunner's lesions” or “Hunner's patches,” are a subtype of interstitial cystitis (also called IC) and are not ulcers in the usual sense. They are distinctive areas of inflammation on the bladder wall that characterize the “classic” form of IC."

Surgery Day The morning of my surgery I woke very excited. It was a school day, so I got the girls off to school and took a shower . My mother in law was going to stay with us for a few days to help out with the girls. Normally I would stress out about this, but I knew she would get the job done. #thankyoustella My husband drove me to the surgery center , and we waited in the waiting room.

That's when the nerves set in. Going under anesthesia is always scary. Especially when you have kids. After what seemed like forever, the nurse called me back to get ready. I slipped on my gown and some long stockings that went up my thighs. " To keep you warm", the nurse said. She started an IV drip and went to get my husband. About 20-30 minutes later the nurse came to take me to the room for surgery. I kissed my husband goodbye and walked down the hall.

I lay down on the table looking at the strangers around me. " They're all going to see my vagina!", I thought. "Oh well" I just wanted to feel better.

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I remember the warm blanket they put on me, and then it was lights out.

What seemed likes seconds later, I woke in a bed with a nurse next to me. I was fully dressed. "Wow! I must have been out of it if they were able to fully dress me without me knowing. " All of a sudden , I had to pee. It was the strongest urge to urinate I had ever had. My first thought was sheer fear. " It didn't work! Why am I in so much pain? I need to pee, and I need to pee now!". I was so upset. I thought for sure the surgery hadn't worked.

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The nurse said I needed to go to the recovery room, but I assured her I wouldn't make it there without peeing myself. She walked me to the bathroom, and I let her rip! " Ahhhh." It felt wonderful! I was peeing with her standing right next to me and I didn't care. There was no blood which surprised me. I thought for sure I'd be a big bloody mess. We went back to my bed and she wheeled me to recovery.

I don't know how long I was in recovery because I was pretty doped up. I wasn't in pain.

My husband said it was a good hour or more that I was there. I do remember a male nurse coming up to me and saying, " I need to check you.", pointing at my crotch . I must have given him a weird look because he said, "do you want me to get a female nurse?". #duhh I was discharged and wheeled out to our car. The ride home was very uncomfortable.

My bladder had filled up again and I needed to pee. I couldn't get into the house fast enough. Again, I was worried that the procedures hadn't worked.

Once I had made it to the restroom, I made myself a bed on the couch and tried to rest. I am a very hyper person that cannot sit still, at all, so resting is very hard for me. I am also a control freak with a major case of OCD. I don't let anyone do the dishes or the laundry. The pain wasn't that bad. A little cramping here and there, and of course I was groggy from the anesthesia. It was nice to have my mother in law there to help with taking the girls to and from school.

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Over the next few weeks I found my bladder was able to hold more urine. I was even able to sleep all night without having to get up to use the restroom. At my post- op visit , my Urologist prescribed a medication called Elmiron. He said it helps to rebuild the bladder lining. The first thing I did not like about Elmiron was the price. I have great Insurance and the prescription still cost me $300. Without insurance it is roughly $700 or more. WOW! I took the Elmiron as directed .

It caused me to have horrible bloating, stomach pain, and over the course of the month my eyebrows were diassaperaing.

The hair was falling out in clumps.

I have a friend who is an RN. She was asking me about my bladder and I told her I was on Elmiron. She looked at me odd and said, " The Chemo pill?".WHAT?? She said Elmiron has been given to patients as a chemo treatment . That explained the hair loss. Why didn't my Doctor tell me this? I immediately stopped taking it. I did some research and found out that Slippery Elm is an herb that is in Elmiron.

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It helps to form a mucous like protective layer inside the bladder. It was right then that I decided I was going to treat myself naturally. *I did not find any evidence supporting that Elmiron is used as a Chemo drug

Treating IC Naturally Slippery elm is a tree. The inner bark (not the whole bark) is used as medicine. People take slippery elm for coughs, sore throat, colic, diarrhea, constipation, hemorrhoids, irritable bowel syndrome (IBS), bladder and urinary tract infections, syphilis, herpes, and for expelling tapeworms. It is also used for protecting against stomach and duodenal ulcers, for colitis, diverticulitis, GI inflammation, and too much stomach acid.

Slippery elm is applied to the skin for wounds, burns, gout, rheumatism, cold sores, boils, abscesses, ulcers, toothaches, sore throat, and as a lubricant to ease labor.

In manufacturing, slippery elm is used in some baby foods and adult nutritionals, and in some oral lozenges used for soothing throat pain.

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How does it work?

Slippery elm contains chemicals that can help soothe sore throats. It can also cause mucous secretion which might be helpful for stomach and intestinal problems. #thankyougoogle Slippery elm is sometimes recommended to people who experience unexplained inflammation of the urinary tract, like those with interstitial cystitis (painful bladder syndrome). Slippery elm powder is thought to soothe the lining of the urinary tract.

Therefore, it might help alleviate the painful irritating symptoms.

I spent hours daily researching natural remedies for IC. I was in several online Facebook support groups . I wanted to help others and share how d- mannose had helped me. It had been a lifesaver for me when I was having a flare. I decided to make a video and show others in the groups how easy it was to use. I thought maybe I could help others go the natural route as well.

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I posted the video in the largest natural IC Facebook group online. It had over 15,000 members. Immediately I was accused of soliciting . I received several messages from the admins of the group asking me to prove I had IC. I was accused of trying to sell product. They made me feel violated. I was just trying to help others. I was then removed and blocked from that group . #WTF I decided to start my own group. I wanted to help others . I took an online class offered through Natural Health School. ( recommended by Natures Sunshine Supplements) I wanted to learn as much as I could . Upon completion of that course I was awarded a certificate of completion . I was now a CNHC. (Certified Natural Health Consultant) I was overjoyed with the requests that were coming in to join my group. I was also stunned at how many others had had a bad experience with Elmiron. I was determined to help as many women as possible .

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ElmironInterstitial cystitis/painful bladder syndrome (IC/PBS) is a condition where patients struggle with symptoms of urinary frequency, urgency, pressure and/or pain, as well as nocturia (frequent urination at night), dyspareunia (painful intercourse), pain and/ or discomfort while sitting in a car, while driving and/or traveling. PPS, as Elmiron, is the only oral medication approved by the U. S. Food and Drug Administration (FDA) for the treatment of IC. Elmiron is available as pills or as a direct infusion into the bladder.

A review of four placebo-controlled studies concluded that PPS was significantly more effective than placebo for pain, urgency and frequency of urination, but not different from placebo for nocturia (needing to urinate during the night).

In IC, PPS is believed to work by providing a protective coating to the damaged bladder wall. PPS is similar in structure to the natural glycosaminoglycan coating of the inner lining of the bladder, and may replace or repair the lining, reducing its permeability.

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This lining is important in preventing urinary toxins from irritating the underlying cell layers. Evidence for this mechanism was found by irritating the lining of the bladders of female rats with acrolein. If the rats were pre-treated with PPS, the damage was much less. Potassium sensitivity tests (PST) showed abnormal cell lining permeability in most patients with IC and indicated a significant reduction in permeability after successful PPS therapy (32-week trial of 300, 600, or 900 mg PPS/day). Another possible mechanism of PPS action in IC is by inhibiting the inflammatory response of the bladder cells, either by indirectly blocking the activity of mediators such as NF-ÎşB, by preventing an influx of mast cells or by preventing mast cells releasing histamine.

Common side effects of Elmiron include: diarrhea, hair loss, nausea, headache, 131

stomach upset or pain, abdominal pain, dizziness, depressed mood, or itching or skin rash.

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Tell your doctor if you have unlikely but serious side effects of Elmiron including: unusual bruising or bleeding (e.g., blood in stool), mental/mood changes, heartburn, or discomfort when swallowing.

The recommended dose of Elmiron is 300 mg/day taken as one 100 mg capsule orally three times daily. Take with water 1 hour before meals or 2 hours after meals. Elmiron may interact with aspirin, alteplase, anistreplase, clopidogrel, dipyridamole, streptokinase, ticlopidine, urokinase, or NSAIDs (non-steroidal anti-inflammatory drugss). Tell your doctor all medications and supplements you use. During pregnancy, Elmiron should be used only when prescribed. It is not known whether this drug passes into breast milk. Consult your doctor before breastfeeding.#thankyougoogle

2018 For the most part I was feeling better.

The horrible cramping had subsided, and I was able to hold my urine longer. The horrible hot burning poker stick sensation was still there though. It seemed to get worse when I was ovulating or when my body thought it was time to have a period. ( I had uterine ablation done in 2013 so I do not have periods). After talking to several women in my support group, I decided to get a hysterectomy. I met with my Dr and we discussed my options. He decided a partial hysterectomy would be best. My Uterus was also slightly prolapsed. We were going to remove everything except one ovary. He made it very clear that there was no promise that the surgery would help with my IC. In October of 2018, I had my hysterectomy. Once again, recovery was not as bad as everyone had said it would be. I have a very high pain tolerance . I'm also not one to just lie around . In fact, I may have repainted all of my kitchen cabinets just two days after surgery, but that's just here say.

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I recovered pretty quickly, and at my post- op visit I reported that my symptoms had indeed subsided. The horrible bloating from IC was totally gone. I no longer looked pregnant all the time . Those of you with IC know what I'm talking about. My frequency was gone. I could easily go 3 hours in between bathroom visits. The horrible flares from ovulation were gone . The burning had subsided, but did occasionally show up. I learned to treat the burning sensation with L- Arginine.

L-Arginine is sometimes known as " the poor mans viagra." It increases circulation " down there" by promoting blood flow. I highly recommend giving it a try for Vaginal burning. L-arginine is converted in the body into a chemical called nitric oxide. Nitric oxide causes blood vessels to open wider for improved blood flow. L-arginine also stimulates the release of growth hormone, insulin, and other substances in the body.

I do not regret choosing to get a hysterectomy. The flares from the hormone changes in my body were unbearable.

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At my eight week post -op visit I was referred to a Physical Therapist . I was going to do Pelvic Floor Therapy. I knew I was a very tense person, but after doing PFT , I realized just how tense I really was. The therapist was able to pinpoint the exact location of my pain by doing an internal exam. Most of my burning comes from one certain location, although sometimes it is the whole outer labia that is on fire. She taught me breathing and stretching techniques I can do at home to help relax the pelvic floor muscles. I wish I had known about this years ago.

We learn about anatomy in Sex-Ed, but we do not learn about the importance of taking care of our pelvic floor muscles. Main functions of the pelvic floor muscles include bladder and bowell control. When these muscles are weak they can cause a variety of problems , such as urinary incontinence and prolapse.

I had a very difficult delivery with my first child. I was literally trying to push him out for three hours before the doctor finally did an episiotomy .

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I was advised that I would need to do Kegal exercises as part of my recovery. Honestly, who has time or remembers to do Kegals?

Maybe if I had done them my uterus would not have prolapsed , and perhaps I would have not developed IC. Having my uterus removed took a lot of weight off of my bladder and provided a lot of relief.

Although I still have occasional flares from IC, for the most part I am flare free.

Following a strict diet is very important .

Everyone is different , so what might cause me to flare may not affect someone else with IC to flare. It's all trial and error and learning how to listen to our bodies. You can learn more about the IC diet by visiting ichelp.org While there is no cure for Interstitial Cystitis, we can control some of the symptoms with natural supplements and diet. I know a lot of women who use aloe vera capsules and have had wonderful results. Some of my favorites are Slippery Elm Powder, Clear Tract brand d- mannose powder, ( the product that got me kicked out of the natural group), L- Arginine, and 136

Calendula. Adding Calendula drops to my water has in my opinion, helped to repair my bladder. Not only does it help to control muscle spasms, it helps to repair wounds by regenerating new skin tissue.

Present Day As I write , my little Yorkie Minnie, aka MinMin is laying on my lap. Those of you that know me know how crazy obsessed I am with this dog. It's crazy how an animal can make you forget about your pain. They love you unconditionally. They love you when your freaking out over something, they love you when your sad, they love you when your in pain. Even though she can't see my illness, she somehow knows when I am hurting. We fall asleep together every night in my recliner. It's become our routine since I became ill. #iloveyouminmin I have always suffered from depression. I can clearly remember the very first time I ever felt depressed. I was ten years old and had just moved away with my Dad. 137

I never knew why we left so suddenly, and my mom, sister and baby brother would join us a couple months later. I was so depressed that I had my very first thought of suicide. Years later I would find out that my biological father had also suffered from depression , and in April of 2008 he committed suicide.

I have been flare free up until two weeks ago when I started a new antidepressant. I have been off and on antidepressants for over ten years. I've tried to treat my depression naturally, but there are times when I just can't take it anymore, and it scares me. I have horrible panic attacks for no reason. My husband can usually always talk me out of them. They've gotten worse lately, and so has my body dismorphia.

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As I've mentioned before, I am a recovered Anorexic. ( that's a whole other book in itself) I weighed 72 pounds at my lowest weight. I almost died. It scares me when I become depressed. It triggers something in me that seeks perfection. I live my life by a daily routine . If that routine is broken, I panic.

My reason for mentioning all of this is because right now, at this very moment, the dreadful " Firecrotch" burn is back. The antidepressants are irritating my bladder. It feels like my vagina has a sunburn, inside and out. Sometimes it feels like little shocks or jolts of electricity . It is the most uncomfortable thing I have ever experienced. It hurts to sit , which brings me back to my recliner. If you don't already own a recliner, I highly suggest you buy one. It allows me to sit leaning back, without putting pressure on my vagina. Why our vaginas burn so bad is still a mystery to me.

The doctors tell us it is atrophy or lichens sclerosis. But why does every single one of us burn? It's obviously related to our IC, I just don't know why. My theory is it has to do with nerve damage " down there", and that leads me to think that the nerve damage has something to do with having IC. I have spoken to hundreds of women . All of them have the same exact symptoms as me.

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Some of the women are so comfortable with me that they have no problem opening up , and discussing why they really think they have IC. Sexual abuse. This makes sense because if we were all sexually abused as small children there would be sufficient nerve damage from the trauma. It also makes sense that this nerve damage worsens during hormonal or stressful times.

I'm not saying sexual abuse is the cause of IC, but it makes perfect sense.

I have always been very sensitive "down there." I've always had problems with constipation as well, which is another common factor with IC . I remember telling my mom that that it hurt "down there." I could only wear cotton underwear, and use sensitive soap. She told me that when I was very young, still in diapers I was crying and complaining that I hurt " down there". The doctor was concerned and asked her if I had ever been sexually abused. We lived at the beach at the time and the doctor diagnosed it as irritation from sand entering my rectum.

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I don't know if I've ever been sexually abused, but I do have a few vague memories of some inappropriate behavior from a family member. What I don't have , is any memory of my life before I was four years old. As to wether or not I've been sexually abused, I will never know.

My Husband has been nothing but supportive! He has had to listen to me complain for years about my pelvic pain. I really didn't think he believed me until the bleeding started. He has even been there for me even when I've gone a little batshit crazy during my hormonal meltdowns. He has been there during every single surgery and recovery. I would not be where I am today without him. Yes , we bicker just like every married couple, but he has picked me up when I felt completely defeated. Having an invisible illness is exhausting. Having an undiagnosed invisible illness is hell.

Being in pain and not knowing why is a very hard thing to live with. When you've been to countless doctors and not one of them can find anything wrong with you, it makes you feel invisible.

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Feeling invisible makes you feel worthless. Feeling worthless makes you feel empty, and feeling empty can make you no longer want to live. I've been there. I've had those moments when I was so helpless that I thought for a split second about suicide.

Since being diagnosed I have heard of several men and women that have committed suicide because of IC. I am not ashamed of saying this in print. Instead I am hopeful. Hopeful that this journal will help someone who may have just been diagnosed with IC, or someone who has just experienced their first case of " Firecrotch" and is looking for answers.

When I told my husband the name of this book, he said I needed to change it. I knew I wouldn't change it. FIRECROTCH is real, and it hurts. I'm just the only one brave enough to say it. Talking about the vagina has always been taboo in this world. Maybe if we talked about it, we could figure out why we get IC and find a cure. I have talked to hundreds of women , and they are all seeking the same thing, pain relief.

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Some of them are reliant upon narcotics.

Some of them are in severe pain because their doctors think they are making up the pain to get narcotics. It's this big giant circle that gets nowhere.

If I can help at least one person find relief , than my job is done. We are all in this together, and together we are one.

Much love , The Firecrotch Fairy

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Natural Alternatives

Slippery Elm is a main ingredient in Elmiron.

Slippery Elm helps to coat the bladder lining with a protective mucous layer. This is the brand I use and it is roughly $11.20

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D-mannose helps to prevent e-coli from sticking to the bladder lining. It is always my first go- to product when I get a flare. Clear Tract can be purchased for around $20 on Amazon, Iherb or cleartract.com 146

Natures Answer Calendula drops can be added to your water. Calendula helps to repair wounds, so I thought it would be perfect for those of us with Hunners Lesions. Calendula flowers are considered to be linked to the second chakra, which relates to creativity, sensual expression and empathy. The second chakra is located in the abdominal area below the navel. #makessense This product can be purchased online for $12.99 naturesanswer.com 147

L-arginine is converted in the body into a chemical called nitric oxide. Nitric oxide causes blood vessels to open wider for improved blood flow. L-arginine also stimulates the release of growth hormone, insulin, and other substances in the body. I have used this to help with horrible vaginal burning IC can cause. I prefer tablets over capsules because sometimes it can be the capsule itself that causes irritation. This product can be found at any local pharmacy or iherb.com 148

Something that has helped me tremendously is Organic Apple Cider Vinegar. The brand I use is Braggs. Make sure it says " from the mother" on the bottle.

I have scared a lot of Women when I tell them to drink apple cider vinegar. Apple cider vinegar is wonderful for the body. It helps to prevent Candida and normalize intestinal bacteria. ( remember the chapter on yeast?) It also detoxes the body, balances PH, and balances the whole inner body.

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"DMSO ( dimethyl sulfoxide) is often used for bladder installations . Although I've never had an instill, I've heard it burns.

DMSO is an FDA approved treatment for painful bladder syndrome. I did some research on DMSO and found that it can be purchased at many health food stores and online. I decided to make my own instill sort a speak. If DMSO can penetrate when applied topically deep down to the bone, I thought , " If I drink it, it will penetrate deep into my bladder lining." So, I mix 1-2 teaspoons of 99% DMSO with a full glass of distilled water when I am in agonizing pain.

My pain almost instantly goes away.

Temporarily, but it knocks the pain out pretty quickly. It is very important to make sure you are using a very clean glass , and filtered or distilled water , as DMSO will cause anything that it comes in contact with to be absorbed into the body. So, if you had water that had lead or metal in it, it would bring that into your bladder."

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I recommend starting out with a very small amount, such as a half teaspoon mixed with a full glass of water. It doesn't taste that great, so you could also mix with juice. It is common for you to have a garlic like oder when using DMSO . My husband can tell immediately when I've drank DMSO.

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Another important factor when treating IC naturally is drinking the right water. IC sufferers tend to have very acidic urine . I have found that by drinking alkalined water my urine is not as acidic and I have less of a burning sensation. With IC, the bladder becomes very hypersensitive and vulnerable to acidic urine. By following an alkaline diet, bladder pain should reduce along with retention and frequency. There are several at home alkaline kits you can purchase to test your urine. Alkaline For Life has a great one.

I have also found an amazing water bottle that alkalines the water for you. It is called , DYLN. This water bottle not only saves you hundreds of dollars, it also produces crisp tasting living water. Each filter lasts up to 400 refills.

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Cranberry Juice is a big NO for IC'ers. If one more person tells me to drink cranberry juice, I'm going to scream! Cranberry juice is acidic! Although it may help a healthy bladder to prevent a UTI, it will irritate a bladder that has IC. Stay away from Cranberry Juice!

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Traveling is very uncomfortable for an IC'er. I stumbled upon a wonderful product by Pelvic Pain Solutions. They make ice pack belts that help to minimize pelvic pain. I never travel without mine . They also make seat cushions !

www.pelvicpainsolutions.com

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It is very helpful to keep some sort of log to track your diet and supplements. The log will help you to see which food or supplements have helped you, or which have caused a flare. You can also use the log to keep track of your pain levels which will be helpful at your Doctor visits.

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Acknowledgements First and foremost I thank my family.

Thank you for not putting me in the looney bin!

To my husband, thank you for always being there for me . Thank you for bringing me up when I was down. Thank you for taking care of me , supporting me, loving me, even when we couldn't have sex.

To my Daughter Hannah, thank you for understanding if I couldn't go to football games when you cheered, those bleachers killed me.

Natalie, thank you for understanding why " mommy" wasn't as fun anymore. I promise you I'm trying.

And Cam, thank you for always showing me nothing but love and support when it should have been the other way around.

To my brother, thank you for actually googling Interstitial Cystitis to see what it was. Thank you for reading the pamphlets the doctor sent home with me . Thank you for asking if I was ok. I love you!

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To my Endermologie clients, thank you for listening! You have no idea how much those talks meant to me. Thank you for understanding when I needed to cancel an appointment.

Kelly White Miller, thank you for helping me get our support group up and running. I don't know what I'd do without you.

April Lee Thorpe, Boria Knoll, Trish Gist, Kelsey Brooke Patrick, Julie Edwards, Patty Schulke, Sharon Custer, Rindi Whitlock, Shawnna Kaufman ,Pattie Sullivan and Allison Mamana , you girls rock!

Dr James Princeton, thank you for listening!

Dr Prah, thank you for doing my Cystoscopy! I've never been happier !

And thank you to every single member of The Firecrotch Fairy! Natural Healing for IC and Pelvic Pain. I wouldn't be here without you! #teamfirecrotch

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About Me I have been practicing Homeopathic Treatments since 2013. My training and education is described below: Certified Lipo Expert ( LPG Training Los Angeles Ca ) 2013 Lymphatic Drainage ( LPG Training Los Angeles Ca) 2013 Microcurrent Facial Rejuvenation ( Microcurrent Therapy Training San Rafael Ca) 2015 Photo Rejuvenation Cosmetic Treatment ( Youth Light) 2015 Esthetic Technologies, Radio Frequency, Ultrasound, Microcurrent ( National Coalition of Esthetics) 2016 Laser & Light Therapy ( National Coalition of Esthetics) 2016 163

Certified Personal Trainer ( American Fitness Institute) 2016 Cosmetic Teeth Whitening ( Beaming White) 2017 Member of Allied Beauty Professional since 2013 Certified Natural Health Consultant 2017 Currently Attending Holistic Art Institute HHP program Admin "The Firecrotch Fairy! Natural Healing Healing for IC & Pelvic Pain " https://www.facebook.com/ groups/938067052990411/ www.greenwitchca.com

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"To some , I am known as The Firecrotch Fairy. To most, I am just a normal person .

What others don't know is that I live my life suffering from the most pain I have ever felt in my life. I may hide behind my perfect hair and fake smile. I may seem to appear just fine. I may even seem to have the perfect life, but I do not. I suffer every single day.

Sometimes I feel like my bladder is trying to give birth. It spasms, it hardens up, so much sometimes it feels as though I am carrying a boulder in my bladder. Some days it feels like my bladder is filled with shards of glass and acid. My outer labia and cervix feel like they are on fire daily, as if someone had a hot poker and were stabbing my vagina with it. I am no longer the Woman I used to be.

My life is owned by my bladder. Some days I urinate up to four times an hour, and that's on a good day. I spend most of my time at home because that is where I feel " bladder safe."

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Sex is a foreign word to me because the pain is causes it unbearable . Sometimes I bleed after sex. I avoid all contact in that area in fear that it will cause a flare. What is a flare? For me it is horrible urethral burning, like someone has set me on fire. Imagine a hot match being forced up into your urethra.

IC feels like shards of glass and acid are inside my bladder. It is the worst pain I have ever endured. I avoid as many family gatherings as possible. I and have no social life......I have Interstitial Cystitis."

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" I love that Dolores has created a safe environment for us to share."

" My sweet fairy sister! Your advice and the way you are just one of us makes a world of difference compared to all the doctors out there! I praise the day that we met on the Firecrotch Fairy website. Your products are amazing, your work is fearless and selfless.

You know what works and what doesn't .

You take constructive criticism. You don't push anything on anybody. You do things with diplomacy and care. You deserve an award."

"Thank You so much! You have helped not only me , but so many others find the relief that doctors couldn't even give us!!!!!"