Endometriosis affects 176 million people worldwide

So what are we doing about it? Fuck all, it seems.

Recently, Imogen Dunlevie, who has endometriosis, tweeted about a study into endometriosis taking place at Sydney University.

Was the research looking at how massively women’s lives are impacted by this illness? How they cope with daily tasks when struck with debilitating pain? How it affects their interpersonal relationships?

No. It was about how men are affected.

Imogen, was rightly, well, pretty fucked off about this. Given that there’s so little funding, so little research, so little understanding of the illness that has distressed her for her entire adult life, she can be forgiven for feeling that. She wrote about the situation for The Guardian.

I’d been planning a post about endometriosis for some time, because I have a seemingly very high number of friends who suffer from it. Or maybe it’s not high – maybe it’s statistically average.

I wanted to give this space to those voices. Because god only knows, the only way that research into this is going to be funded is if more and more public pressure is applied. Endometriosis isn’t a tiny once-a-month inconvenience. It’s intense and very common and more needs to be done for those affected by it. I had quite a few people reply but then unable to give stories for a variety of reasons. Thank you very much to everyone who engaged, however much you did.

ANNA:

“I had horrendous pain right from my second period. I was actually incredibly lucky (??) that my mum had moderate endo and my aunt (her sister) had, like, my level of horrificness — so my mum at least knew what was going on and believed me, even if she couldn’t help! Sooooo many people in my life, including the ob/gyn I saw at 18, have been convinced I’m a precious whiny snowflake whinging about a minor cramp.

So, yeah. From the time I was 12, until I got a Mirena at 22, I would be in so much agony I would vomit pretty much non-stop for 36 solid hours. Every month like clockwork. Well beyond there being anything left in my stomach to throw up. Not fun 🙁

My cramps would start about a week before and ramp up, so I’d often be at school in agony and then boom, period and vomiting. The pain meant I struggled to eat for 2-3 days before my period and the first couple of days having it, and I had major blood sugar and anemia issues. I passed out in English once, that was fun. I’ve had my period on my birthday, and on Christmas Day, and on New Year’s Eve… I’ve spent more than one night asleep on the bathroom floor because I couldn’t even summon the energy to crawl back to bed, let alone walk. I get intense pain when I ovulate (I’ve had more than one person see me clutching my side white with pain and think I have appendicitis!).

My GP wouldn’t attempt any treatment other than Panadol and a wheatie for about 3 years, because she thought putting me on the pill would make me have sex >_> When she finally did start trying to treat me, nothing worked. I probably tried about 8 different brands of the Pill/mini-pill, the implant, Depo, Voltaren suppositories (woohoo), you name it. I tried natural medicine and acupuncture and an osteopath and all sorts of other stuff. Got a specialist appointment at 18. Specialist told me I was exaggerating and “all women get periods take a painkiller and suck it up”. When I asked about fertility implications he told me I was too young & immature to be thinking about being a mother (Spoiler alert: I’m infertile). Reluctantly gave me a laparoscopy and d&c, found no evidence of endometriosis, and decided that was proof I was full of shit.

Moved to Wellington, got a better specialist and an actual diagnosis. The big game changer was the Mirena, though. I did have to fight a bit for it — they are a bit leery of giving them to people who haven’t had vaginal births. But when I gave them the laundry list of what else I’d tried, and said “it’s this or a hysterectomy because I cannot do this anymore“, I got one. Post-Mirena: I still get cramps, but I can function now — I can take a painkiller and actually go to work (!) which is such a relief. Cramps only start a day or so before my period now, generally. I still get intense stabbing pains when I ovulate, and chronic pelvic pain. Sex can sometimes be quite painful. And, of course, still infertile. Mirena hasn’t been a dream: I’ve put on a shitload of weight since getting it that I’m just starting to lose now, and my libido sunk through the floor. It’s due to come out in November… I have a very un-fun decision to make.

I have legit panic attacks at the thought of my symptoms going back to what they were. My mum is 50 in a few months and is nowhere near menopause — before my Mirena, when I had my period and envisaged 30 more years of the pain… I was borderline suicidal. It’s so hard to describe. And it’s not just the pain — vomiting for 36 hours, long after there’s anything left in your stomach, results in an indescribable level of exhaustion. Interestingly, people who’ve never experienced period cramps are more inclined to believe the level of pain I’m in than people who do get some level of cramping — I think possibly because people who get period pain tend to use their level of cramps as a baseline and assume that’s the level of pain I’m in, and therefore I’m exaggerating my pain levels. (This is a massive generalisation, obviously — it’s not true of everyone, but it’s a trend).

I’ve always wanted kids and the infertility is really hard. But on a day-to-day basis, trying to have a life… It’s pretty hard to, say, go on holiday if you know one week you’ll have lead-up cramps so aren’t going to have much energy, the next week you’ll have your period so that rules a bunch of stuff out, then you’ll be ovulating and aren’t going to want to do much, then there’s just random days of pelvic pain. I work in payroll, and there was a really unfortunate stretch of time 4-5 years ago where my period coincided with pay processing day — I think for about six months. And I was the only person with access to run the pay at the time. I literally had my laptop sitting on top of the toilet cistern so I could push the pay through between bouts of throwing up. Not fun!”

ALYX:

Endometriosis is emotionally exhausting. There’s the societal expectation that periods suck – that they hurt, and all women deal with it. Acknowledging that your pain is worse, or different or “more” than what is “reasonable” means proving to a doctor that your pain is debilitating. Nobody else can see it and there’s only one way to diagnose it; with surgery. The average length of time to diagnose endometriosis is nine years. The only reason it didn’t take that long for me is because my mother, who had endometriosis as well, pushed for an early referral.

Endometriosis looks like driving with a bag in my lap, in case I have to be sick because the pain medication makes me so nauseous I can’t think straight. It looks like bending double at random moments as my body tries to protect itself from the unseen pain. It feels like pain that becomes so familiar I feel a little bit lost without it.

The pain is bad, but it’s not the worst part. The worst part is the exhaustion of not knowing when it will end, when it will come back and the fear of how badly it might have affected you and the ability to realise the life you want for yourself.

Endometriosis: The facts

Endometriosis affects 176 million women worldwide.
Roughly 1 in 10 New Zealanders will be affected by it.
Endometriosis affects about the same number of women as diabetes and costs about the same but receives 5% of the funding of diabetes.
There is no known cause or cure.
In most cases, there can be symptoms including period pain, pelvic pain and sub-fertility or infertility
Endometriosis occurs when tissue similar to the lining of the uterus (endometrium), is found in places outside of the uterus. The tissue can form nodules or plaques which may be visualised at surgery. Endometriosis is commonly found in the pelvic region on the thin pelvic lining called the peritoneum. It may be also be found on the pelvic ligaments, ovaries and bowel. Endometriosis is occasionally found in places outside the pelvis such as in scar tissue, the bellybutton or lungs.