“Endometriosis is a bitch. Don’t give it a chance to make your life a misery.”

This week is guest blogger Amy M, delving into Endometriosis!

I was 16 when I first went to see my GP about my period pain. This had followed years of agonising cramps, missed classes, and general woes. I was told it was just what happens, given a bottle of mefenamic acid, and sent on my way. In a way I was lucky. It only took me three years after this first visit to get a diagnosis. The average amount of time for people with this illness is around eight years.

See, I have an illness called endometriosis. I live with it, I suffer from it, I worry about what it’s doing inside my body. Endometriosis affects around 10% of us poor sods who were blessed with a uterus. It’s the term for when tissue, similar to the sticky tissue inside your uterus that the foetus would attach to (the endometrial lining), gets far too enthusiastic about existing and shows up in places that aren’t the inside of your uterus. This could be, but is not excluded to, the outside of your uterus, on your ovaries, on your bowel, on your bladder. This endometrial tissue sure is adventurous. Thing is, when you have sticky tissue just hanging out in your abdomen, it decides it also wants to do its job and stick to things. If it’s left untreated for too long, it can start fusing your internal organs together, like an unwanted organic superglue.

As you can imagine, it hurts. A lot. Pain is the primary symptom – excruciating periods, pain during sex, pain whilst pooping, pain whilst doing grocery shopping, pain just after waking up, so on and so forth. Fatigue plays its part too; sometimes IBS symptoms present as well, and there’s a link between endometriosis and infertility.  

So flash to when I’m 19 and in the process of getting my diagnosis. I’d had a rough few months leading up to this. Constant exhaustion, pain so bad I was missing lectures, a couple of A&E visits, that sort of thing. It wasn’t fun. After a while, I’d got referred to a gynaecologist to see if they could figure out what was wrong with me, and after spending some quality time with my favourite medical professional, Dr Google, I was pretty sure I knew what was going on. The only way endometriosis can be diagnosed formally is through a specific keyhole surgery, known as a laparoscopy.

I have a very vivid memory of sitting in the consultant’s room, hoping that she would offer me surgery, and being told that I should probably have a baby, because that sometimes cures it. Spoiler alert: I didn’t take her up on that particular bit of advice, and had a laparoscopy in summer 2013.

The thing about endometriosis is that there’s very little known about it. Nobody knows what exactly causes it. There are theories, and currently it’s most widely believed that you’re born with it, so there’s no way of escaping it if cruel fate points at you. There are still a few different ideas about what makes it happen in the first place.

And as for a cure? That’s even trickier. Again, there are a few different schools of thinking about how to remove endometriosis from the body. There are several methods of surgery that can be performed, some of which are reputedly more effective than others. But here’s the kicker: endometriosis can be, to the non-expert, fairly tricky to spot. It likes to hide in the darkness, plotting away, as tissues sometimes do. Keep that in mind whilst I tell you that there is no correlation with the amount of endometriosis in the body and the severity of symptoms. You could have lots of growth and be relatively okay, or you could have a couple of tiny spots and live in agony. And, because of the strains on various health systems, there are very few people who specialise exclusively in endometriosis, and this often leads to treatment that doesn’t exactly work.

That, I believe, is what happened to me. The first few months after the surgery were better, but it didn’t last. My symptoms were manageable, though, so being the stubborn arse I am, I decided to keep on keeping on.

I’m going to give you a word of warning now: if you think you have endometriosis, or a similar condition, make sure you go to your medical provider before things get bad.

I didn’t do that. I decided to just get on with it. It was only pain, after all, wasn’t it? And it was alright for a couple of years. I could deal with having to have more downtime than my peers. I learnt how to deal with working through agonising periods as well as I could manage to. It wasn’t going to kill me, and it was only getting worse slowly, so I convinced myself I would be fine and there was no point trying to see another specialist. I’d moved across the country, and it would be such a hassle to get a referral. Looking back, stubbornness is definitely one of my weaknesses.

In May this year, I came down with a fairly nasty stomach virus. Pain, vomit, general grossness, the usual shebang. It was highly unpleasant. But it passed, and I kept on working, but I wasn’t feeling much better. The pain was getting worse every day I was working, to the stage where I’d wake up, do my shift, come home, take as many painkillers as the doctor would let me, and go straight to bed. By the time I gave in to the flare up and accepted I needed to take some time off to get better, I was constantly pale, limping and hunched over from the pain.

My theory is that something happened during the stomach bug that triggered the endometriosis somehow, and an MRI has since shown significant growths near my bowels. That same MRI also came with a diagnosis of adenomyosis, which is almost like endometriosis’s sister illness, where the lining of the womb grows backwards and embeds into the muscle of the uterus. It took me three months to get back to normal, partly because of how horrific the flare up was, and partly because I just didn’t use my own common sense and rest when I should have.

I’m on a waiting list for another surgery, even though I’m back to my version of normal now. I’m currently studying for an MA in Publishing, and I’m doing my best not to let the knowledge that I’ll have someone cutting me open fairly soon get in the way of my studies. The fear that I’d have to experience a flare up as severe again is fairly constant, but I’m in good hands here in Oxford – or I will be once I get to surgery. The demand for effective surgery is so high that I don’t even have a date for it yet. I have this theory that the lack of research and qualified specialists for a disease that affects about 5% of the population might just have something to do with the fact that it predominantly affects women’s quality of life, but that’s another argument for another time.

Please, please, please, go and talk to your medical provider if any of what I’ve said applies to you. Endometriosis is a bitch. Don’t give it a chance to make your life a misery.

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