Despite endometriosis affecting 1 in 10 women worldwide, it is a disease that is often misunderstood, misdiagnosed and incorrectly treated. This can be a long and isolating journey for those who suffer from it. Women have started sharing their own stories, providing solace and solidarity as well as helping others to get earlier diagnoses and receive the correct medical treatment.
We spoke to Erin, a friend of Youswim, who told us candidly about living with endometriosis, her diagnosis after years of struggle, to surgery and life beyond.
Before you read on, I should probably say that I know very little about endometriosis (menstrual tissue growing outside of your uterus). I can’t comprehensively educate you on symptoms, therapies, their side effects, and statistics. Let’s just put that out there now, so we are all on the same page. To be fair to me though, until 8 weeks ago I didn’t even know I had endometriosis. Stage 4. Out of a possible 4.
Dear reader, endometriosis is like nothing and everything. It would have been lovely if it presented itself like a car crash. One moment you are happily cruising along, and the next you need qualified medical attention. None of that. While my period was never mellow, by the point I was experiencing PMS for 2/4 weeks of my cycle, which included days of literally screaming in pain, on prescription painkillers and with heavy bleeding, I thought that was ‘normal' because it had built up very slowly for 7-10 years, possibly longer. During this time, and despite my GP having put me on regular prescription painkillers for ‘PMS’ 5 years ago, they didn’t once think it would be logical to have a gynae check-up to make sure things are ticking along merrily. That’s not a thing in England.
Until 8 weeks ago I didn’t even know I had endometriosis.
Did you know endometriosis can affect your fertility?
This is why, when I sat across my friend’s highly recommended, very lovely and gentle gynaecologist, LGG for short, who I had booked in with for a general check-up, I told him I had no issues or concerns (ha!). I’m 36 and grew up in another country where a yearly check-in with a gynaecologist is standard. So I felt after my last one being the better part of two decades ago and being closer to 40 than 30, I should treat myself. And treating myself it is. It’s probably cheaper to go to a day spa (I live in London), than booking in for a private medical appointment. I have to say that I’m very lucky that I am able to afford a private gynaecologist and the tests that come with it, along with having access to private medical health insurance through my work which covered the have-it-when-you-want-it surgery. None of the following would have been possible for me without either and I have rarely been more thankful.
It took about 2 seconds for LGG after what can only be described as having gently touched my vagina with an ultrasound wand (an optional extra, in for a penny, in for a pound), to swivel around the monitor for me to see. A bad sign. He showed me one pretty impressive endometrioma (that’s a blood-filled, cyst-like blob attached to my ovary) with 2 (!!) more hiding behind it and some comparatively modest endometriotic tissue build-up on the other ovary. Later, we would also find that there was endometriosis growing on my bladder. LGG very gently told me that the odds of it being cancer are very, very low (I also had a cancer marker blood test and the biopsy of the tissue would later confirm I definitely have endometriosis) and that he very much feels for me. He would recommend fertility-preserving laparoscopic surgery. Yesterday.
Endometriosis is not life-threatening, though that’s probably the only positive thing that can be said about it. Did you know endometriosis can affect your fertility? I didn’t. LGG told me that it’s highly unlikely I would be able to get pregnant with my current levels of growth and build-up. Turns out, the ultimate litmus test of whether you want children or not, is being told you may not be able to. I was NOT ok with that.
Endometriosis can also cause debilitating period pain, worsen your IBS or give you IBS-like symptoms (I haven’t had a flat tummy since I-can’t-remember-when, and it’s only partially because I LOVE crisps; that’s ‘chips' for you non-Brits), affect your immune system and result in a cornucopia of other things, including no symptoms whatsoever (remember I said it was like nothing and everything?). Doctors don’t fully understand what causes it and there are no permanent treatment options (treatments technically only treat symptoms and even after surgery endometriosis has a high recurrence rate). Once you have it, it’s yours for life.
So surgery it was. Everyone’s experience is different. That being said, compared to my period, surgery was a pain-free joy. I checked into the hospital at lunch, went into pre-op for afternoon tea, and was back in my room for dinner. Not that I could eat anything mind you, since I was viciously nauseated from the surgery. That was probably the worst of it. The three cuts twinged, and obviously, I was less mobile but overall quite peachy the next morning when I hailed a taxi and went home. The best I can compare it to is having overdone it massively in the gym and running around with some very sore abs and torso for a few days. That’s it.
I love my body and I have to believe that we will be just fine.
Trust your body, and most importantly, trust your gut.
And so my endometriosis journey ends. For now. A bit anticlimactic I grant you. How much endometriosis impacted my life and cycle until now will only become clearer over the next few months. I will have to come in for bi-annual check-ups and I now have a Mirena coil as they apparently minimise the risk of recurrence. LGG described my fertility levels as “fabulous for a woman your age” and my ovaries post-surgery as “fruity”, and I have ignored the weirdness of these compliments and focus instead on what my friend calls being “fertile as f-ck”.
Don’t get me wrong. I don’t want to make light of endometriosis. Did the diagnosis floor me? Yes, it did. Did I cry myself to sleep (literally) in fear of it potentially being cancer and/or not being able to conceive children? You bet. Was it hard for me to hear that while I was diagnosed with endometriosis, not one, not two, but three (three!!!) of my friends shared they were pregnant? Hell yeah! Did I crumble into a puddle of relief on my bathroom floor when my fertility and cancer marker tests came back fine? Oh yes, yes I did. Am I nevertheless terrified that my fertility is irreparably damaged despite LGG’s assurances? Very much so. But I’m a ‘laugh about it ‘till you die from it’ type, with a snarky optimistic streak. I’m the annoying friend who talks about silver linings and says things like “onwards and upwards”. I love my body and I have to believe that we will be just fine.
And here we are. So if you made it this far and if there is one thing I leave you with, dear reader, it’s this, trite but true: go see a doctor. Hell, see three doctors. Even if there is ‘nothing wrong with you’. For check-ups and twinges and aches and fatigue and low mood and everything else in-between. Don’t trust the system will catch any of it, trust your body, and most importantly, trust your gut.