World Childless Week: Endometriosis is NOT simply bad period pain

When I tell people that I have endometriosis they assume that I mean I have bad period pain.  They couldn’t be more wrong.  Yes, it can cause bad stomach cramping and heavy flow: however, it is far more than that.  It is a disease that wrecks the lives of 1 in 10 women around the world that’s more than 178 million sufferers.  That’s a huge number and yet awareness about what endometriosis is, how it effects our daily lives and how it effects our ability to have children is very limited.  It’s not common knowledge that endometriosis can spread to the hips, lungs and even brain even amongst doctors.

 

Endometriosis and World Childless Week

 

So, what is endometriosis?

Endometriosis is when the lining of the uterus (the endometrium) appears outside the womb.  These pockets of abnormal endometrial cells can attach themselves to other organs.  Places where it SHOULDN’T be.  When a woman with endo has her period, she doesn’t only bleed within her uterus.  She bleeds everywhere that the endometrial cells have migrated to.  She bleeds in places that have no exit to the “outside world”.  With nowhere to go the blood coats anything that it comes in contact with, causing adhesions that stick parts of the body together that should be moving freely doing their own “thing”.  My adhesions had totally covered my left ovary and stuck that ovary to the outside of my uterus bending my fallopian tube in half.  Endo adhesions can attach themselves to the bladder, bowl and diaphragm.  It can be found in hip joints and the chest cavity.  As I wrote earlier it can even be found in the lungs and the brain.

I’ve had two very extensive surgeries to remove the endo adhesion from my lower abdomen where it had caused a frozen pelvis.  Basically, I couldn’t touch my shins with my finger-tips let alone the floor because my back was so inflexible.  On two occasions, I had surgery planned by a general gynaecologist initially.  They took one look at my abdomen and threw their hands up in horror: these adhesions are far too severe for me to deal with so Nicci needs to be referred to a specialist.  One of those specialists said my frozen pelvis was the worst he had seen in 20 years.  He was horrified by the extent of the adhesions as I’d had major surgery less than 4 ½ years earlier.

 

Endometriosis and World Childless Week

 

What does endometriosis feel like?

Well the first thing to say is that everyone is different.  Some women can have agonising pain for years and yet they only have relatively mild endo.  I was at the other end of the scale.  I had virtually no symptoms at all until I was 40.  My periods were so regular you could almost set your watch by them.  They were a little heavy and days 2 to 5 fairly painful: however, not excessively so when compared to other people.  The only other “symptom” I had was that I wasn’t falling pregnant.  Andrew and I did conceive following a split condom incident in December 2002.  Despite having a miscarriage at 11 weeks this lulled us into the false sense of security believing that my eggs only had to smell sperm and they would fertilise.

Reality proved to be a little different.  We both had extensive tests carried out in the spring of 2006 because nothing was happening.  The result of that was “unexplained infertility”.  Oh great.  So, we simply had to creep back home and keep TRYING!  Incidentally I really hate that word.  I’m with Yoda on this one: “Do or do not. There is no try”.  Following another year of NOT conceiving we headed off to The Bahamas to celebrate my 40th birthday at which point all hell broke loose.  I woke up screaming in agony having only been 40 for 3 hours: can I go back to being 39 PLEASE?  The pain was my left ovary starting to complain very loudly about the endo adhesions.  During the next eight months, I spent much of my life with a hot water bottle strapped to my side.  I had my doctor’s surgery on speed dial, frequently calling him when I was away on business to ask permission to up my dose of codeine, paracetamol and ibuprofen to get me through the week until I could see him.  Endometriosis is bad period pain my foot.  My worst pain, when I turned white, sweated profusely, could hardly stand and wanted to vomit, happened every other month at the time of ovulation.  Meanwhile my periods remained a relatively normal yet very unwanted occurrence: yet another month of NOT conceiving!

 

Endometriosis and World Childless Week

 

What’s the cure for endometriosis?

There is none!  Despite over 178 million women suffering from this debilitating disease there is no cure.  In addition, despite 1 in 10 women suffering from endo doctors are still very unsure of the symptoms.  This means that it can take years for a woman to be diagnosed and I do mean YEARS, between 7 to 10 years for many women.  Because of the wide range of areas effected by endo woman are often misdiagnosed with food intolerances and IBS, lower back and hip problems, low magnesium and iron or a thyroid imbalance or bladder and Urinary Tract Infections.  The list is endless.  There is also research to suggest that endometriosis is an auto-immune disease although it is not clear yet which comes first.  Is a woman with a compromised immune system at a higher risk of endometriosis or does her endo compromise her immune system?  Either way it sucks.

You know I wrote earlier there was no cure well you might be thinking “What about a hysterectomy?”  After all, if endo is caused by the lining of the uterus being where it shouldn’t and adhesions are a result of the blood produced during a period, surely having a hysterectomy will stop this happening.  Many people, including doctors, believe this so you are no alone.  Unfortunately, those pesky abnormal endometrial cells that have found their way to other parts of the body still remain after a hysterectomy.  They still have the ability to bleed, cause adhesions and pain.  Some women DO get some relief from having a hysterectomy: however, the vast majority of women don’t go onto have a pain free life after surgery.  Likewise, the menopause doesn’t always mean that the problem and symptoms disappear.

Talking about the menopause when I went to my GP five years ago because my periods had stopped. In December I had a period January I didn’t.  First thought was that I was pregnant (YEAH) until multiple negative pees on sticks lead me to visit my doctor.  Blood tests proved I wasn’t pregnant so he latched onto the next obvious reason:  He couldn’t see beyond the fact that I was in my mid 40s so it must be the start of the menopause.  Despite my assurance that “I know my body and something is wrong” he labelled me as a woman who couldn’t have children who was in denial that I was going “through the change”.  Everything in my medical history should have alerted him to the fact that something else could have been going on and that needed investigation.  (This wasn’t my lovely doctor who I had on speed-dial years before: it only it had been!).  After four weeks and numerous appointments with other doctors in the surgery I gave up and paid for a private scan.  The results?  My endo had returned, my left ovary was stuck to my uterus, my right ovary wasn’t where it should be, both ovaries were abnormally large due to cysts and my pelvic region was so full of adhesions it was hard to know where to start.  To say that the colour drained from my doctor’s face when he saw the photos is the understatement of the year.  Before I left the surgery, he had talked in person to a local gynaecologist and I had an emergency appointment booked for the next week.  It’s amazing what the fear of a lawsuit can do!

 

Endometriosis and World Childless Week

 

What’s happening with my endometriosis now?

Since my last surgery in 2013 I’ve been on the contraceptive pill in the hope that it would slow down the rate at which my endo adhesions returned.  So that was the end of hoping to conceive.  Despite this my pelvis has re-frozen and this time my hip and spine are involved.  Last year my sciatic nerve became trapped between L4 and L5 which lead to a month on morphine and a lumbar support that I have only recently stopped wearing.  This has effected by general health: I’ve gained a stone and my endo tummy makes me look as though I am 5 months pregnant.  I can only walk the dogs 3 miles every other day: two years ago Bailey and I walked 150 miles in 30 days! I’ve also shrunk 4cms in the last 10 years.  Now it is normal for a woman to shrink by about 4cm between the ages of 40 and 70: however, I’ve done it between 40 and 50!  Oh and that left ovary that was causing me so much pain.  Well it was removed in 2013 and still has me bent double in agony several times a month.  So, take it from me, endometriosis is not simply a case of bad period pain.  It goes far further than that!

The one silver lining from all of this is that my endometriosis is obviously hereditary.  My sister definitely has endo.  My mother had a frozen shoulder which is usually caused by endo plus she was told that having another child after she had me would probably kill her due to “women’s problems”.  My maternal grandmother also only had one child due to those types of problems too.  So, what’s this silver lining? Well if I had conceived and given birth to a daughter she too would have become endo sufferer 178,000,001 which I wouldn’t wish on my worst enemy!

 

Some Endometriosis Resources

 

You can find out more about endometriosis of Endo Stats who kindly gave me permission to use their images.  Here’s their Facebook Page

A great blog about endometriosis is written by Claire at the endo the world

Finally having the support of people who have endometriosis and know first hand the pain, frustration and anger is causes is a must.  I belong to the Endo Fight Club on Facebook and the support I have received from my Endo Sisters has been invaluable.

 

 

When Andrew and I first heard about World Childless Week I knew that we needed to be involved and support Stephanie Phillips as much as possible in this new venture.  We’d been feeling frustrated for some time that the childless-not-by-choice were marginalised and a forgotten sector of society.  We were also frustrated that much of the support available and the awareness weeks is focused on improving fertility rather than how to deal with unresolved infertility or the other reasons for being childless-not-by-choice.  To find out more about World Childless Week and join in the discussions please visit the World Childless Week Facebook Page.

 

 

Infertility Call to Action

2 Responses

    • Nicci

      I’m sorry to hear that you have endometriosis too Brandi. Such a debilitating disease! I have most of the pain under control now and hope that is the case for you too. Doing the research on the stats was a real eye opener for me as well.