Infertile since 25- the silent epidemic

From such a young age, girls are conditioned by society to believe that their menstrual cycle will be painful.  They tell us dysmenorrhea (painful menstruation), menorrhagia (heavy bleeding) and metrorrhagia (irregular cycles) can be perfectly normal, that it's different for each one of us and some are just luckier than others.  It's seen as a taboo subject and should we dare to voice our pain or concerns to doctors, we're all too often viewed as exaggerating hypochondriacs with low pain thresholds.

Well, on that note, here's a little story about my so called "low pain tolerance".  I broke several ribs in 2014 when I was heavily pregnant with my daughter after losing my balance and falling into our marble bench top.  I heard a loud crack and dropped to the floor, winded, in crippling pain.  My then fiance (now husband), Pete took me to the hospital and when the ER doctor probed my rib cage as she examined me, she informed me I could not possibly have broken any of them or I would be screaming in agony from her mere touch!  

An X-ray was unable to be performed due to my pregnancy, so an ultrasound was used to investigate.  The ultrasound revealed "multiple" fractures but an exact number was not noted in the report.  I then went on to have a natural birth with those still broken ribs and my alleged low pain threshold!

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It took approximately 9 years from the first onset of my symptoms until my conditions were diagnosed.  That seems ridiculous but it is actually not too far off the average sufferer's time of 7 years before an official diagnosis is made!

This is a disease that affects a staggering 1 in 10 women!  An average of 7 years is a disgrace and an embarrassment to western medicine.  We need to change this horrendous statistic and that is why I refuse to remain silent.   This is a hereditary condition and a legacy no mother wants to leave for her daughter and, while it may be too late for a cure in my lifetime, it doesn't have to be too late for my little girl, should she ever be diagnosed with endometriosis herself.

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So what exactly is endometriosis?  It is a painful, chronic condition in which tissue and cells similar to a woman's endometrium (lining of the uterus), grow outside of the womb, usually in the pelvic cavity.  The most common areas are the reproductive organs such as the ovaries, Fallopian tubes, the exterior of the uterus, the uterosacral ligaments, the Pouch of Douglas and the peritoneum.  In severe cases lesions can also be found on the bladder and bowel, while less common areas include the cervix, blood vessels, nerves, lungs and the diaphragm.  Noteworthy too, albeit rare, is the fact this disease has been discovered in all parts of the human body with the only exception to this being the spleen!

Symptoms of endometriosis include, but are not limited to, abdominal pain, back pain, pelvic pain, ovulation pain, nausea, painful intercourse, irregular menstruation, heavy bleeding, severe cramps, spotting and/or bleeding between periods, difficulty falling pregnant, infertility and/or a history of miscarriage/s.  Painful bowel movements and an increase in the frequency and urgency of urination are also common, sometimes coupled with bleeding from the bladder and/or bowel.  

It is important to keep in mind that symptoms and their severity do vary from woman to woman.  Sufferers may have all, some or none of the above mentioned ailments.

Upon diagnosis, a woman's endometriosis will be classified into 1 of 4 stages:

Stage 1- Minimal

Stage 2- Mild

Stage 3- Moderate

Stage 4- Severe

Many people hold the false belief that symptoms lessen after you have a baby and some even believe pregnancy to be a cure however, this is nothing more than an old wives tale.  To date, there is no known cure and telling a woman with this disease to "just have a baby" (yes, I've heard of people doing this) when she is possibly already trying desperately to conceive, could potentially be soul destroying for her.  Around one third of women with this condition struggle with fertility issues and, according to a 2017 article investigating the link between endometriosis and miscarriage, having endo appeared to increase a woman's risk of miscarriage by almost 80%!  This is truly frightening when compared to the general  miscarriage statistics which state that 1 in 4 women will experience at least one in their lifetime.

Another added complexity, to the generally already arduous task of attempting to start or add to a family, is that birth control pills and other contraceptives can play a big part in helping to alleviate pain and regulate cycles for us.  Just like with symptoms though, the effectiveness of these methods also vary from patient to patient and while contraception does work for the vast majority of endo warriors,  I have never been so lucky.  

Before having children of my own and prior to receiving my diagnosis, my GP trialled me on just about every form of oral contraceptive available, in an effort to regulate my cycles and to help ease my pain.  Alas, none of them worked and contrarily, they only worsened the woes I'd been experiencing.

  

We eventually gave up on the oral forms and my doctor recommended we try the Implanon rod.  This is a small device which secretes progestogen into the body and it is surgically inserted into the upper arm, under local anaesthetic.  This proved to be even more of a failure than the pills had been and my doctor removed it after just a few months. 

Things went on more or less the same for the next 8 years or so until mid 2013, at which time they took a grave turn.  It was late at night and I can remember screaming these blood curdling screams that were beyond the realms of my control!  The agony I was experiencing felt akin to the late phase of labour with my eldest son, Lachlan!  

Over the course of a few hours, after painkillers and heat pack application, the cramping gradually eased.  This was the first in a long line of similar episodes over the next 2 years but I have never, ever forgotten that first night or the terror it was accompanied by.

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Whilst pregnant with my daughter, Porschia, I was granted a brief but welcome reprieve.  This, sadly, was short lived and she was only a few months old when my pain returned with a vengeance.  My gynaecologist referred me for urgent category 1 laparoscopic exploratory surgery.  She suspected I had endometriosis based on my symptoms, pain and history but the only way to definitively diagnose it was through surgery.  With my consent she would treat as much of the disease as she could while she was in there.

My gyno's suspicions were correct and additionally, as a result of the lengthy time pre-diagnosis, my bowel was adhered to my abdominal wall on the right and left sides.  Adhesion of organs is a very common complication of this disorder.  Endo is so much like the endometrial tissue and cells it mimics, that it even goes so far as to break down in the same way during periods, causing internal bleeding.  The difference is, it has nowhere to exit the body and therefore spreads throughout the pelvic cavity, creating free fluid and scar tissue which then leads to the innards "sticking" together.

A bizarre fact about me was also discovered during this operation- I have no appendix!  It hadn't ever been removed, meaning that  I was evidently born without one; a phenomenon occurring in only 1 in every 100,000 people!

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After my initial operation, a follow up surgery was scheduled to take place in a few months time to treat the remaining endometriosis, free my adhesions and to take a biopsy sample from my uterus.  My gynaecologist suspected I also had something called adenomyosis, a disease very similar to endo, differing only in that occurs within the muscle wall of the uterus. 

After my second surgery had taken place, my gynaecologist next recommended an endometrial ablation to temporarily treat my adenomyosis, followed by a hysterectomy in my 30's.  Pregnancy after endometrial ablation is very rare (between 0.7 and 2.4%) but can be extremely dangerous for both mother and fetus, even when Mum is perfectly healthy in all other regards.  After this procedure, there is a great risk of haemorrhage as a result of the abnormal implantation of the embryo in scar tissue.  For this reason my gyno refused to perform the ablation without a tubal ligation as well.

  

With mixed emotions, I signed on the dotted lines and spent the lead up to my third surgery grieving for what might have been and learning to be at peace with the unfortunate circumstances.  My body, flawed as it is, gave me 3 perfect babies before succumbing to the worst of these illnesses.  I soon came to realise I am beyond blessed and my heart is infinitely full.

When the day of my third surgery inevitably came, through unforeseen circumstances, my regular gynaecologist was unable to perform my operation.  She is the most brilliant doctor, in the gynaecological field, that I have ever encountered and I've often wondered if things may have been different, had I rescheduled that op, rather than gone ahead with it in her absence...

When I awoke in recovery this time around, I knew immediately something was horribly wrong.  I could hear my name being called far, far away, over and over again... it  got closer and closer; clearer and clearer.  Slowly my eyes flickered open, as my body started violently convulsing.  My teeth were involuntarily chattering and the pain was excruciating!  I had a little pain after my first two operations but nothing so intense as that of my third.

A nurse was beside me stroking my hair.  She explained to me that my body had gone into shock from internal bleeding.  I was given oxygen, pain relief, IV fluids and antibiotics and, when my body finally stopped shaking, I was able to find the strength to ask what had gone wrong and why I'd been bleeding internally.  She assured me my doctor would come and discuss it with me on the ward but right then, the focus was on controlling my pain enough to move me from recovery.

I would later learn that my uterus had been perforated in 2 different places (a very rare complication) and consequently, the ablation procedure had needed to be abandoned.  The surgeon cauterised the perforations to stanch the internal bleeding and then proceeded with the tubal ligation.  

The lining and wall of my uterus was apparently much softer and thinner than it should be and the treating gynaecologist believed this to be the reason the perforations had occurred.  The IV antibiotics had been administered to decrease my risk of infection from it and I was prescribed a course of oral antibiotics as well.  

Surgery is needed approximately once every 5 years to remove the regrown endo and check for any new lesions.  This is a chronic condition that I will have for the rest of my life, even after menopause but you know what?  It will never stand in the way of my happiness, nor the pursuit of my dreams.  This life on earth is but a breath in eternity and I refuse to waste a single second of the precious time I've been given. ❤

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