What actually is endometriosis?

CN: cis-sexism (see comment at the end of the post), uncomfortable truths about the value we place on women’s bodies, lots of swearing

I was explaining this to a friend on a train on Friday. He looked slightly horrified, and said that he’s never heard of it before. I get this from everyone I talk to, man and woman. For a condition that affects approximately 10% of the female population (and costs the country the same as diabetes), it is a surprisingly under-researched and misunderstood condition. Having said that, I don’t find it surprising at all. Diabetes may affect similar numbers of people, but it also affects men. Endometriosis is a woman’s condition, and as such, no one gives a fuck about it. If you look on the NHS website for endo, the first treatment option they recommend is paracetamol. Fucking paracetamol, for a condition that can severe enough to prevent women working, that can render them bed bound and in constant agony. Fucking paracetamol.

What is endometriosis? I’m only dating a future-doctor, not one myself, so I’ll use non-medical language that will make my med student friends cringe. A woman’s womb is lined with uteral tissue. Every month, according to her menstrual cycle, this tissue grows and sheds. That shedding is your period. After the period, the lining grows again (assuming no baby has been conceived), and the whole process starts again.

My body works like that, but unlike most women, I have “womb tissue” outside of my womb. To be precise, I have excess tissue on my ovarian ligaments, behind my left ovarian fossa, and on my Pouch of Douglas. Other women with endo will have it in other places, and although it can be found anywhere in the body, it’s most common in the abdomen. The problem is that this tissue behaves the same as the tissue in your womb. When it’s in your womb, the growing and shedding has somewhere to go, so to speak: namely, the vagina, when your period starts. For women with endo, our excess tissue has no where to go. It grows and sheds, and then, it’s stuck there. This causes pain and scar tissue build-up, and can – if left to its own devices – cause a woman’s internal organs to fuse together.

This causes pain, as you might expect, but also a whole raft of other issues. It can cause excess menstrual bleeding. It can cause extreme bloating (a future post for you all to look forward to, complete with pictures of my distended endo stomach: nothing if not committed to this blog.) It can cause infertility, as the ovaries and womb fuse. It can cause ectopic pregnancies, as the egg implants in rogue tissue rather than in the womb. It can cause excruciating sexual pain, as a result of the penetration tugging on scar tissue. It can cause fatigue. It carries a higher incidence of cysts, which, if they burst, can be agonising. It can, depending on where the endo grows, cause bladder and bowel problems. It can cause low moods and depression, I think for obvious reasons.

This, of course, varies between women. Some women have very mild symptoms (I count myself among those women.) Some have more extreme pain. One woman I spoke to recently told me how the endo was coating the inside and the outside of her bladder. As a result, she was unable to empty her bladder, and constantly felt like she needed the bathroom. Try and imagine feeling like that, with no relief. Another woman told me about bleeding through her clothes on to her partner’s parents sofa. Another told me of not being able to date: “what man wants a woman he can’t have sex with?”

My symptoms aren’t as bad as some women’s. I have awful bloating, so bad I have been offered a seat on the tube due to looking pregnant. I have frequent and completely random stabbing pains by my left hip, a leftover relic (I believe, although as with most of my endo, no doctor has been able to confirm to me) of my surgery last year and the scar tissue that will have added to my insides. I experience painful sex, of course. I hope that I’m not infertile.

I hope that this has helped to shed some light on this condition. It takes an average of 8 years in the UK to be diagnosed. Some of this is due to doctors not taking women seriously. Some of it is a healthcare system that is buckling, and that has no time for women like me whose symptoms aren’t life threatening. Some of it is down to women themselves not recognising their symptoms, and not knowing that they can get help.

More info on what endometriosis is (from someone who probably does know the scientific words): https://www.endometriosis-uk.org/understanding-endometriosis

Note: I realise that this blog post speaks a lot about women and wombs. I of course recognise that not all women have wombs, and that not all of those with wombs are women. I could have written “people with wombs”, as I often see done on feminist websites, but I have chosen not to in this case. This is because I feel that endometriosis, and the affect it has, has been minimised in our culture precisely because it is mainly a condition that affects women. Having said that, I also recognise that this condition would be horrendous for anyone with a womb, man or woman. 

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