I’ve got endometriosis; getting diagnosed, treatment and the reality
March is endo awareness month. I didn’t find that out until today. And I have endometriosis, so you can bet I’m pretty flipping aware of the whole shebang. Whenever I say I have endometriosis, I get met with A. a quizzical look from pretty much all guys and most women or B. a ‘what a nightmare’ reaction. The second one pretty much sums it up, but in case you’re a member of group a (and there’s no problem with that, that’s what endo awareness month is here for after all), I tend to describe it as my uterine lining having gone on an adventure around my body, and getting stuck. Imagine bits of your womb get drunk at a party, wander off and lock themselves in the bathroom, then complain about being stuck and try and scratch their way out of their new ‘prison’. Thaaaat pretty much sums it up nicely.
There are so many different versions of endo, but two key pain patterns: it either hurts like a bitch when you’re on your period, or it hurts like a bitch constantly. I am #blessed with the latter. Luckily I finally got a diagnosis a while back after plenty of unrevealing tests, scans and surgeries. The whole process of getting diagnosed was a nightmare, took literally years and I went through way too many drs appointments involving pregnancy tests and suggestions I had IBS (a serious condition in itself but something different). The average diagnosis takes seven years. SEVEN. I had my appendix removed when I was 17, which my doctor now thinks was an endo flare up and not, in fact, my appendix trying to burst, which is great. I was really lucky in my previous job as I went through my worst pain, diagnosis and treatment whilst there, and they were incredibly supportive (and my manager, and now one of my best friends, was and is an angel).
There were literally times before my diagnosis where I thought I’d gone crazy. Doctors made me feel like the pain was in my head, despite literally being carried unconscious into A&E and other such fond memories. It was the lumps of bloody flesh that I had to take photos of to show at my hospital appointments (just one reason never to scroll through my camera roll) and supply samples of, that reassured me I wasn’t just bonkers.
Since my diagnosis, I’ve had laser treatment to burn away the endometrial tissues which makes a massive difference. Unfortunately it does grow back, and at varying rates, so I have to stay on top of pain management, often with strong pain killers that make me feel exhausted and never very well rested. It’s not the same for everyone though. Endo is not one size fits all, much like clothing that claims to be just that. So if you know someone with endo or suspected endo, here are a few general tips on how to be helpful and also not a cock womble…
Things that aren’t helpful:
- Telling me to go vegan/gluten free/dairy free/keto/ some other weirdly specific diet. Eating less cheese won’t stop my uterine tissue growing but it will make me annoyed.
- Suggesting I sleep too much. My body is basically constantly recovering from micro traumas and I know what it needs.
- Asking if I’ve thought about yoga. Yes I’ve thought about it, but when I’m bent over double, throwing up in pain, it’s not actually top of my priority list surprisingly.
- Telling me about that one person you vaguely know who has it too. One in four women have it. It’s actually v common.
- Suggesting I get pregnant. Yes, it can help with the symptoms for nine months, but after that, I’m stuck with endometriosis and a baby, neither of which I’m keen on having (not right now at least, keep your hair on mother).
Things that are actually legit helpful:
- Offering to come over and make a brew (but only if you know someone well, otherwise that’s just 𝓌𝑒𝒾𝓇𝒹).
- Understanding if I need to cancel plans last minute. Your girl needs to rest.
- Offering to come to yoga with me if it’s suggested by someone else, and making up for the whole situation by drinking wine with me afterwards.
- Recommending a support group your friend who has endo found helpful. There are some awesome local ones on FB.
- Not recommending I get pregnant. Seriously. Some doctors need to read this. I don’t want a baby right now. Go away.
If you’re reading this thinking maybe I have endo, good luck gal. It’s not an easy journey at all but it’s worth persevering to get answers and treatment of the symptoms. There isn’t a cure for endo, which is quite annoying to be honest. I still get pain of varying levels, especially during my period. Having the implant helped a bit. Having the coil did not (but that’s a whole other story). If you’ve got any q’s about endo or your worried about what having it means for you, drop in on my Insta DMs and we can chat. There’s nothing worse than going through something like this alone, so don’t be a stranger.
Oh, and while I’m here, go get your bloody smear test done. It’s honestly not that bad.