Endometriosis and Pelvic Pain. What you need to know. by Dale Gibb

Endometriosis and Pelvic Pain what you need to know

Endometriosis affects one in ten girls and women If your period affects your lifestyle you may have endometriosis, mate kirikopu

nzendo.org.nz

me.school.nz

1 IN 10 GIRLS AND WOMEN

HAVE ENDOMETRIOSIS. Thatâ&#x20AC;&#x2122;s approximately

176 million women worldwide and over 100,000

There is currently an

8 10 year delay from the ďŹ rst time you see a doctor about symptoms to when a diagnosis is made.

girls and women in New Zealand but this could be much higher as it is often undiagnosed.

Endometriosis can cause each woman to lose eleven

working hours a week in absenteeism (absence from work) and presenteeism (working less effectively).

Early intervention is fundamental to improving the quality of life of those with endometriosis.

Symptoms can start from the FIrst time a girl gets her period.

WHAT IS ENDOMETRIOSIS? The low down ........................................................................3 Symptoms ..............................................................................4 What causes endometriosis? ..................................................4 How do I know if I’ve got endometriosis? ..............................4 Where do I start? ...................................................................5

WHAT IS ENDOMETRIOSIS?

Contents

MEDICAL AND SURGICAL Medical Treatments ................................................................7 Surgical Treatments ................................................................8 Fertility ...................................................................................9 Things you might not have been told ...................................10

SELF MANAGEMENT I feel like I’ve tried everything! What else can I do?...............11 Nutrition ..............................................................................11 Where do I start? .................................................................11 What foods should I watch out for? .....................................12 Other foods to watch out for ...............................................13

MEDICAL AND SURGICAL

Surgical Treatments cont ........................................................9

Supplements that may help ..................................................14 Exercise ................................................................................15 Sleeping Well .......................................................................16 Complementary Therapies ...................................................17 Life Coaching .......................................................................17 Pain Control Tips .................................................................18

OK! What information should I read FIRst?

SELF MANAGEMENT

Counselling ..........................................................................18

WHAT IS ENDOMETRIOSIS?

The low down Endometriosis (pronounced endo-me-tree-osis) is when tissue similar to the lining inside the uterus (endometrium) is found in places outside the uterus where it shouldn’t be. This tissue can look red and inflamed and can form lesions, nodules and cysts mostly found in the pelvic region on places such as the pelvic lining (peritoneum), Pouch of Douglas, ovaries, bowel, ligaments and bladder. Fallopian Tube

Ovary Uterus

Cervix

Vagina

l bits’ ect all the ‘gir Endo can aff n the bowel, eve ybe ma & down here as Pouch of Dougl bladder & the do w, but YES you (random we kno of Douglas!). have a Pouch

You may also have... … Adenomyosis (pronounced add-en-oh-my-osis) is a condition where endometriosis is found in the muscle of the uterus. Endometrioma or ‘chocolate cysts’ are cysts of endometriosis, which are usually found in the ovaries. Adhesions are bands of fibrous scar tissue which cause organs or structures to stick together.

These can look like rubber bands or cobwebs!

Pelvic Pain. There are lots of causes of pelvic pain. Nongynaecological causes of pelvic pain may be related to the digestive system, urinary system, musculoskeletal structures, and nervous system. When pain is experienced on most days and has lasted for more than three months it’s considered a chronic pain condition. So, there could be more going on than endometriosis.

Just remember,

you can’t catch endometriosis, it’s not a STI, males can’t get it and you can’t die from having it. 3

te n no rm al, Dis co mf or t of no rm al. r ve ne s es dis tr

Pain with periods (dysmenorrhoea).

Bowel problems like bloating, diarrhoea, constipation, painful bowel movements.

Pain with intercourse (dyspareunia).

Subfertility or infertility.

Tiredness / low energy.

Pain in other places such as lower back, headaches or migraines.

Premenstrual syndrome (PMS). This might make you feel moody, emotional and irritable.

Pain at other times of the month, like with ovulation.

Abnormal menstrual bleeding (heavy or irregular).

Pain before, with or after urination.

WHAT IS ENDOMETRIOSIS?

Symptoms

What causes endometriosis? Endometriosis seems to run in families, so you are more likely to have it if there’s a family history. It’s important to remember not everyone who has had symptoms will have been diagnosed. The cause is likely to be multifactorial with a strong genetic link.

How do I know if I’ve got endometriosis? The first step is to see your doctor, who will refer you for tests to figure out what’s going on. These might be blood tests, urine tests, ultra sound, cystoscopy (bladder scope), colonoscopy (bowel scope) or maybe even some other scans. These tests may come back normal. Keep investigating! You may need an operation called a laparoscopy. This is how endometriosis is diagnosed and surgically treated.

WHAT IS ENDOMETRIOSIS?

I’m worried I won’t be able to have babies?

Should I see a fertility specialist?

I’ve got lots of different symptoms. Is it all endometriosis?

What can they do?

My doctor said my symptoms were normal but I’m struggling to do everyday things. What if they are normal?

I’ve been told I have IBS. Can I have endometriosis too? Will blood tests or scans show I have it?

How long will I have to wait?

“ Where do

Do I need to se gynaecologist?

Should I see my GP?

Will my hospital help?

How do I get an appointment?

I have health insurance, where can I go?

What tests will they do?

Can I choose who this is? Should I take someone with me to the appointment?

Tip Discomfort with periods is often normal, distress is never normal.

If your period is affecting your lifestyle and stopping you from doing everyday things, it’s important to figure out what’s going on.

Symptoms can start even from the first time you get your period.

That means teenagers can have endometriosis.

o I start?

ee a ?

Can teenagers have endometriosis?

What’s normal?

”

WHAT IS ENDOMETRIOSIS?

I’m worried people will think I’m making it up! Who should I talk to?

There’s so much info! How do I know what to believe? Will natural treatments help?

How do I get the right advice?

Will exercise help? Does changing your diet help? They found

I need laparoscopic surgery. What if they don’t find anything wrong?

What else can they do?

endometriosis, what now?

Why do I have it? Is it genetic? How common is endometriosis? I feel totally alone.

Why haven’t I heard about endometriosis before?

We are here to answer all your questions.

Call our information line 0800 733 277 6

MEDICAL AND SURGICAL

Medical Treatments Pain medication can be helpful to ease pain and works best when taken before the pain gets too bad. Have a chat with a pharmacist, who can help you decide which type of pain medication is right for you. The Contraceptive Pill can help to balance and regulate periods and often eases distressing symptoms. There are different types of pills, so it’s important to work out with your doctor which one is best for you. If the one you are on isn’t working, you can try a different one. Depo-Provera (the injection) is something your doctor can prescribe. Similar to the pill it may help with distressing symptoms. One injection usually lasts approximately three months. Mirena® is an intrauterine device (IUS) it sits inside the uterus and can last for up to five years, slowly releasing progesterone over this time. This thins the lining of the uterus making periods lighter, aiming to reduce pain and is also a contraceptive. A little bleeding and some cramping is normal at first as it can take several months for it to settle. Mirena® can be fitted whilst under general anaesthetic, at the same time as your surgery, or at your doctors. Make sure you talk with your doctor if you have any concerns about Mirena®. GnRH analogues (like Zoladex®) are hormonal based treatments aiming to reduce the growth of endometriosis by suppressing oestrogen production. It’s important to talk to your doctor about the benefits of this option and the side effects.

T IP

These treatments are often used in conjunction with surgery to dampen down active endometriosis. Remember, medical treatments can have side effects. Make sure you talk to your doctor about these, so you can make an informed choice on what would work for you. Everyone is different, so something that is ‘life changing’ for one person might not work for another.

Laparoscopic surgery (key-hole surgery) This is how endometriosis is diagnosed and is performed in hospital under a general anaesthetic (you are asleep). It can be removed at the same time. A laparoscope (thin telescope) is inserted through a small incision (hole) at the base of the navel (belly button). Several small incisions on the lower abdomen are often made. This surgery is best performed by a gynaecologist with expertise in treating endometriosis.

MEDICAL AND SURGICAL

Surgical Treatments

The best way to remove endometriosis is through a technique called excision/resection, which means to cut it out. Laparoscopic surgery is usually day surgery; however the doctors and nurses looking after you may keep you in overnight or for a few days depending on how extensive the surgery was and your recovery post-operatively. Recovery is a really important time and it can take weeks and sometimes months to feel the benefits of surgery. Make sure you give your body time to heal before you jump back into ‘everyday activities’. Your surgeon may tell you the extent of the disease, which is usually described as mild, moderate or severe, or stage 1 – 4.

Does this sound familiar? “I can’t believe it was only stage one and I’ve had such horrible symptoms that have stopped me doing so much stuff.”

Remember, the severity of symptoms don’t relate to the staging of disease. You could be diagnosed with stage one disease and have terribly painful symptoms and a very disrupted life. What you went through and the severity of

symptoms was real, you weren’t making it up!

As with all surgery there is an element of risk, which should be discussed with you. Of course your consent must be in written form.

MEDICAL AND SURGICAL

Surgical Treatments

cont...

Hysterectomy This is a procedure where the uterus (including the cervix) is removed. This is sometimes recommended in severe cases of long-standing painful and extensive endometriosis or adenomyosis. It’s essential that any endometriosis is removed at the same time to help prevent symptoms continuing. If this is recommended, gather all the medical facts and thoroughly explore your options. Oophorectomy This is where one or both ovaries are removed. If both ovaries are removed, symptoms of menopause will usually be experienced immediately or very soon after surgery and can often feel worse than natural menopause. Hormone Replacement Therapy (HRT) is usually recommended and discussed with you. T IP

The surgeon said they didn't find endometriosis?! You can’t always see pain, so keep investigating. There may be other things going on like nerve damage, painful bladder conditions or painful pelvic muscles. It may also be that endometriosis wasn’t visible at the time of surgery, but could still be there.

Fertility We don’t always know why endometriosis affects fertility but having it does NOT mean you’re infertile. Fertility is decreased in about 3 or 4 in every 10 women with endometriosis, so if you’re planning on having a family, it’s a good idea to try ‘sooner rather than later’. When endometriosis is severe the ovaries, pelvic organs and tubes are often involved and the anatomy can be distorted. However, fertility can be affected in women with mild endometriosis too. Laparoscopic surgery to remove the endometriosis improves fertility for many women but some will still need fertility treatments such as IVF. No medications prescribed to improve endometriosis, improve fertility. Being overweight and smoking affects fertility in men and women.

have been told... You might experience shoulder pain after surgery, this is normal.

Pain relief can help, it will go away.

MEDICAL AND SURGICAL

Things you might NOT

Endometriosis can

come back in some

people even after

surgery. Medical treatments

(hormones) are often used to help slow this down.

Hysterectomy and pregnancy WONâ&#x20AC;&#x2122;T

cure endometriosis, but may help symptoms.

Mild endometriosis can feel just as bad as severe

endometriosis.

I feel like I’ve tried everything! What else can I do? Nutrition You can relieve symptoms significantly, particularly if they are bowel related, by making changes to your diet. Women and girls with endometriosis commonly experience the following bowel related symptoms: Diarrhoea with period. Bloating. Pain opening your bowels. Fluctuations between constipation and diarrhoea Excessive or painful wind. Bowel cramping. Rectal pain and / or bleeding. Lower back pain. Often you become so used to the symptoms, that while they are often annoying (at the very least) or can be disturbing and painful, they are often accepted as normal. Comments like “it’s just my funny tummy”and “I’ve got IBS, so I just live with it” are commonly heard.

Where do I start? Start taking note of what you’re eating, how much and how you feel after you eat it. Everyone is different, so this will give you a really good idea of what foods you might be reacting to. If you have bowel related symptoms this is great, because it’s something that YOU CAN CONTROL and you can START NOW!

Remember...

It is very important to have a test for coeliac disease before beginning a wheat or gluten free diet. Understanding what foods irritate the bowel and changing what you eat is something you can control. START NOW!

More information is available at

nzendo.org.nz and fodmap.com 11

What foods should I watch out for? Introducing FODMAP

foods

Fermentable, oligosaccharides, disaccharides, monosaccharides

and polyols. FODMAPâ&#x20AC;&#x2122;sâ&#x201E;˘ are sugars that occur naturally in foods that are not well absorbed by some people and can irritate the bowel. Women with endometriosis often have a sensitised bowel and therefore have difficulty coping with too many of these foods.

Fructose - Is a sugar found in fruits like apples, pears, dried fruit and fruit juice as well as foods such as coconut and honey. Slow absorption of fructose in the bowel can cause problems. If this seems to be you, choose fruits or foods with higher glucose like berries, bananas, kiwifruit and citrus. Lactose - Many women with endometriosis are lactose intolerant or have lactose sensitivity (some can be tolerated). Also, if eaten to excess the calcium in dairy foods can prevent absorption of magnesium, which is a muscle relaxant and can ease period pain. Fructans - Are foods like onions, artichokes, corn syrup and wheat products (bread, pasta, breakfast cereals, biscuits and pizza) that release fructose in the bowel. Choose alternatives if you have more pain or feel uncomfortable after eating fructans. Raffinose or Galactans - These are found in foods like brussel sprouts, beans and broccoli. They increase wind in almost everyone. CIAL ARTIFI NE R SWEETE

Polyols - These are found in artificial sweeteners.

Other foods to watch out for... Animal Fats - Dairy, takeaways, fatty meats etc. Alcohol - Wine and beer often pose problems for some women. This could be due to the preservatives (often sulphites) used in the process and the high yeast and sugar content often cause a reaction. Coffee - Caffeine, like alcohol, is also thought to impair fertility and is a diuretic. Try herbal teas and coffee substitutes for a change unless you have an irritable bladder. Fizzy Drinks - Putting bubbles in a bubbly tum is not a good idea. If it’s a diet drink it contains sugar substitutes which are FODMAP™ foods. These are also known to be carcinogenic. Highly Spiced Food - This could be the spice but more commonly it’s probably the rich creamy sauce which might be causing your bowel grief. Food Combinations - Pizza for example (dough base, coupled with processed foods). Additives / Preservatives - Particularly sulphites. Look out for ‘E’ numbers (the numbers given to food additives) particularly, but not limited to, those in the 220 range.

Other - Listen to your body and moderate your diet accordingly.

Supplements that may help For general well-being, PMS, pain and inflammation

Multi-vitamin and mineral supplement (preferably also containing antioxidants).

Flax seed oil with black currant and evening primrose oil (highly recommended).

Additional Vitamin B Complex (promotes hormonal balance and relieves stress. Fish oils. Magnesium (helps reduce muscle spasms).

Immune system Zinc (Optizinc - well absorbed). Selenium. Vitamin A. Vitamin D. IBS and other bowel problems like bloating, wind, candida and thrush Digestive enzymes with each meal. Aloe vera juice. Probiotics and prebiotics (acidophilus). Flax fibre (also hormonally beneficial). Specific herbal products for treating endometriosis

Vitus-agnus castus. Wild yam.

Tiredness Spirulina. TIP There are lots of different

supplements that may help.

Itâ&#x20AC;&#x2122;s a good idea to talk to a nutritionist or another expert who can help.

Complementary Therapies Here are some of the therapies girls and women with endometriosis have found useful. Massage is gentle and healing and releases tensions. Massage can allow the flow of more nutrients to areas in need of healing. Acupuncture was developed by the Chinese centuries ago in accordance with the theory that energy flows through channels between the surface of the body and internal organs. Pain is the manifestation of blockage in the energy flow and acupuncture is meant to break up the blockage by placing acupuncture needles at specific pain points. This aims to release the bodyâ&#x20AC;&#x2122;s natural painkillers and perhaps helps the immune system cells and the brain. Relaxation, Meditation and Visualisation are healing techniques which send positive energy to the mind and are very beneficial for those who live with chronic pain. Yoga combines deep breathing, meditation and stretching and helps mental health and physical wellbeing. Naturopathy aims to support the bodyâ&#x20AC;&#x2122;s ability to heal itself through dietary and lifestyle changes. Traditional Chinese Medicine is a combination of practices to aid healing by restoring the yin-yang balance and the flow of energy.

T IP There are lots of different therapies that may help.

Follow the guidance of a reputable natural health therapist.

Life Coaching A life coach will help you work out what you really want and tackle the obstacles in your way. They will be there to support, encourage and guide you, keep you focused and even channel renewed energy in your career.

Counselling Sometimes education and open communication about endometriosis does not naturally lead to greater understanding. Despite knowing about the disease you or your family may still harbour doubt and negative thoughts. When you are not able to do the things that previously brought you joy, you grieve that loss! You may be able to address these difficulties on your own or with the help of friends. However, there are times when counselling can be most helpful to assist you on a pathway to wellness, particularly when you consider you may have struggled with symptoms for a very long time. It is often difficult, even after successful surgery, to overcome the cycle of un-wellness, without help.

Pain Control Tips Be positive, telling yourself good things every day.

Keeping your mind active and keeping busy helps take your mind off the pain. Exercise regularly. Have a relaxing bath or shower. Heat or ice applied to the site of pain can help.

Laughing releases endorphins and has the â&#x20AC;&#x2DC;feel goodâ&#x20AC;&#x2122; factor.

Visualisation, meditation and deep breathing are methods used to control pain. Remind yourself that it is temporary and that it will pass.

Attending a pain clinic may help. You might need a referral from your doctor.

remember, there is no cure for endometriosis, but it can be successfully

treated and managed once you find the right way to do it. Sometimes the process might be really frustrating. Stick with it. Pain can be complex to treat and a combination of treatment options is a good approach.

Wow, That info was great! I now know what I need to do.

Want to know more? The book ‘Endometriosis and Pelvic Pain’ by Dr Susan Evans and Deborah Bush QSM covers everything you need to know about these conditions and is a must read practical guide for anyone whose life is influenced by endometriosis. Available through nzendo.org.nz.

nzendo.org.nz me.school.nz Information Line 0800 733 277 Email info@nzendo.org.nz

Endometriosis New Zealand is the organisation representing girls and women with endometriosis and pelvic pain in New Zealand and works with those who treat these conditions.