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Meet Alice

"If it wasn’t for The Endometriosis Foundation, I wouldn’t have heard of the excision surgical method for managing endometriosis. If it wasn’t for my excision operation, I wouldn’t have been able to conceive naturally - and, miraculously, on my first cycle of us trying"!

My story

One day I will have to explain to my daughter that I once begged a gynaecologist to perform a full hysterectomy on me to stop my excruciating pelvic pains, and that at the time I was upset, bewildered and furious that he would not agree to remove my reproductive organs, even though the agony they gave me was putting my ability to work at risk, and was causing considerable strain on my ability to socialise, exercise and have a normal relationship.

 

Before having our daughter, I used to often projectile vomit and then collapse from severe acute pelvic pain attacks that would leave me unable to walk and go on for anywhere from five to twelve hours. During that time I would either need to be looked after by parents, a partner, friends or housemates, or I would have to go without meals, washing and anything else that required me to move any further than a bathroom. My periods were debilitating every few months when I would ovulate from my left ovary.

 

Before becoming a mum, my periods always varied wildly in their timing, heaviness and level of discomfort. Sometimes I barely noticed them and could carry on as normal, like women with normal bodies, other times they would be so thick and full of blood clots and ache so badly that I would be doubled over at desks and in classrooms.

 

I also experienced a few burst ovarian cysts since my twenties, but not just your average ovarian cysts - endometriomas, or ‘chocolate cysts’ as they’re also known which were larger, hung around for longer before bursting, and could result in infections after they exploded inside you.

 

I was twenty-eight when I was diagnosed with polycystic ovaries syndrome and an overreactive pelvic floor dysfunction (also known as ‘vaginismus’), thirty when I got my endometriosis discovered, and thirty-one when I finally had an endometriosis specialist surgeon correctly diagnose me with stage 3 endo and remove as much of the tissue that could be seen.

 

Endometriosis had attached itself to my whole pelvis (including growing round both my ovaries, which were also frequently covered in tiny cysts from my PCOS, and the largest patch was found hanging out behind my uterus on my sacrum), and along my vaginal canal. As a result of my adventurous cells, as well as frequent chronic pelvic pain, I also suffer with continuous chronic sciatic pain and sporadic sciatica.

 

 

It wasn’t long after joining the support group run by The Endometriosis Foundation that I left the other endo groups I’d found on Facebook, or started to use them less often. They all provided useful information and a safe space to vent or ponder the many issues we endo sisters can sometimes feel burdened with, but, The Endometriosis Foundation was different. The administrators/moderators kept a close look out for any negativity and swiftly coaxed members in more positive directions. And, they went a step further - they opened up to all of us and reached out into the void grappling for answers themselves - using it the same way we members were. It’s easy to see that the admins have a close bond with one another; these women have discovered a beautiful friendship in the lonely depths of this disease and swathes of medical professionals who can leave us feeling discarded.

 

Endometriosis can rob us of close friends, distance us from our families, steal our careers away, hinder travel plans, and, most heart-breaking of all, diminish our ability to have children. The Endometriosis Foundation have set an example for the rest of us and continue to do so. They fight ferociously in parliament for us, they travel the world visiting surgeons and specialists, all the while dealing with their own pain, fatigue, hot-flashes, nausea and hospital trips and STILL have the energy to adjudicate a forum of women desperate for answers, and, sometimes, just to be heard. Since I’ve been using The Endometriosis Foundation pages, I’ve made real friends who understand exactly what I experience daily.

 

The Endometriosis Foundation isn’t just a big dark well in which to yell out the scariest, most excruciating and most embarrassing symptoms you have and the darkest thoughts you have on the worst days; it is that, but it’s also more. It’s not just a community, it’s a community that leads by example. It’s hard not to be awestruck by the founders of The Endometriosis Foundation; to be inspired by their honesty, their resilience and their love for one another.

 

Thankfully, my pain attacks have not yet reached a 10/10 since having my daughter, but (unlike uterine contractions during Braxton Hicks or labour) I don’t get any breaks in my pain anymore either, which has led me to develop chronic fatigue syndrome (diagnosed aged thirty-two by my GP). So, rather than being normal one minute and catatonic the next, I’m always in a steady state of lower-back pain.

 

I would say that my invisible illness is better managed now than it has ever been, thanks to obtaining the correct information to advocate for myself and asking for help from the right people.

 

With ongoing support from the combination of my GP, my endo specialist gynaecologist, and my pain team at the hospital; I’ve been able to access expert advice from a women’s health physiotherapist, get prescribed the pain relief I require, and have enough of the tissue removed that I was able to have a child, despite being advised by my endo surgeon (who’s also a fertility specialist) that it would be unlikely I would ever be able to get pregnant naturally and would need to have enough of my eggs frozen for at least three rounds of IVF (which I couldn’t afford).

 

I suffered an extremely difficult pregnancy; I had 8 bladder infections in eight months, had morning sickness from the very first month and suffered with hormonal migraines that also caused nausea and sickness which lasted up until the night before our daughter made her appearance into the world. During the second and third trimester our baby’s every movement was torture for me, as she kicked against my tender insides that were full of cysts and an ovary that had gotten stuck to my bowel from an adhesion following my latest surgery. Although I had to sit through appointment after appointment with obstetricians harping on at me about the myth that “pregnancy cures endometriosis”, I became sicker and less mobile. But, it cured my low-blood pressure hypertension that had caused all my fainting (which I’d developed from taking opioids for the pain long-term), it cured my anemia, and since birthing our daughter my symptoms have been considerably less acute. It exacerbated my condition to the point where I developed severe ‘antenatal’ depression and anxiety, which thankfully, with professional support, didn’t turn into post a depression too. Even though my pregnancy was the most challenging ten months of my life, as most parents will tell you - I’d do it all again in a heartbeat!

 

Yes, I had to undergo three pelvic operations in three years (one major and two minor). Yes, I have had to become self-employed from home just so I could continue to work while battling chronic pain. Yes, I have had to make sacrifices regarding my social life and active hobbies. Yes, I have had to adjust to my ‘new normal’ over the last six years of having ‘bad days’ on a weekly basis where I am unable to leave the house. Yes, sometimes my partner has to look after me and take on extra domestic chores when I’m having a flare.

However, I consider myself one of the very lucky ones. So many couples who would make fantastic parents will never have that opportunity, due to this disease.

 

I can only hope with awareness of endometriosis that the detection of symptoms, the diagnosis of the disease and its treatment continue to improve so women can access the medical attention they need as early as possible so that they don’t risk having to have multiple surgeries, major or emergency surgeries, losing organs or parts of organs, and for those people who do want a family that they don’t have that choice taken away from them before even having the chance to try because the disease has ravaged their insides so aggressively.

 

Knowledge, in my case, has most certainly been powerful!