"Get better soon"

March sees the return of Endometriosis Awareness month and instead of sorting my financial records as the end of the tax year is dangerously close, I thought it'd be a good opportunity to share my story.

"Get better soon" - it's a sentiment with which we're all far too familiar. I won't. Seriously. Endo has no cure; it is a chronic disease that usually resolves by the time menopause rolls around, by which point the average endo sufferer has dealt with around 30 years of debilitating symptoms.

I was diagnosed at age 24, after struggling with painful periods since the age of 13. It took over a decade to finally have a name for something that had ruled my life since the beginning of my teenage years. For most of this time, I was able to plan around my period, which is when my symptoms were limited to, although looking back I also experienced something akin to morning sickness, with nausea every morning. Once a month for a few days, I would be out of action for any intense physical activity, reliant on maximum doses of paracetamol and ibuprofen to 'take the edge off' my wicked abdominal cramps. I missed school, dance, and other normal teenage activities, but was assured that painful periods were nothing unusual, and something many womb-owners experience, and was chucked on birth control to 'help' mitigate the pain.

I can remember the day I woke up with an upset stomach, nauseous as anything, and completely washed out - Sunday 22 October 2017. I thought this was, at first, just a hangover, and subsequently a stomach bug. Except it never went away. I was visiting the bathroom and emptying my guts anything from 5-7 times a day, and no one could tell me what was wrong, not even a gastroenterology specialist I paid to see (when the symptoms hadn't resolved after several months) privately at a Wellington hospital three hours' drive away. On a gut feeling, when my period started and the symptoms worsened, I again paid privately to see a gynaecology specialist. I drove three hours again to see a specialist recommended to me by a friend - and was nearly sent me on my way without so much as an internal exam. I put my foot down and demanded something for my trouble, when she found indicators consistent with endometriosis.

The fact that actual gynaecologists can be so completely misinformed of potential signs of a literal gynaecological disease still just stuns me.

One of the problems with our publicly funded hospital system is that you have to wait - sometimes years. At this point, I had been in constant pain for around six months, and was still waiting just to have a consultation. My grandmother funded a private surgery which cost over $10k, to do what she could to help out, and for this I am so grateful. This surgery removed what is best described as something akin to womb-lining growth in the Pouch of Douglas (little nook between your uterus and your bowel) and adhesions tethering my bowel. I had almost a full year pain and symptom free, and was able to juggle full-time primary teaching with a full-scale amateur theatre production (up to 5 rehearsals a week, with a 3 week run of around 15 shows). 

I also had a Mirena (hormone IUD) inserted at the time of my surgery, due to the theory that it would help inhibit any regrowth of the disease. So while I barely have a cycle anymore, after a year, the cramping pain started returning on its own schedule. This slowly merged with constant fatigue, until I reached a point where I could no longer work full time. I have tried so many different medications, so many alternative therapies, and I am just about managing to function for a few hours at a time right now. But according to the gynaecologist I saw just a few weeks ago, who is an actual member of the Endometriosis NZ board of surgeons - an organisation meant to be dedicated to helping us - I don't warrant another surgery. Without it, I will not "get better" anytime soon. I am a literal shell of what I should be at 28 years old. I miss being able to dance. I miss not having to nap to get through a day. I miss not being in pain. I miss having 'a painful period'.