The Vagenda

TMI: Endometriosis

Guys, I think we all can agree that adverts about sanitary towels and tampons are beyond patronising – nobody really feels like jumping and dancing and, er, skydiving when they’re on their period – but for around 7 years, even walking while I was on my period was agony. So no leaping, dancing or skydiving for me. If I could help it, there’d be no getting out of bed  lest my insides felt like they were being pulled backwards.




I actually PRAYED for my period to come when I was 10 years old. I’d just read Judy Blume’s book (judge me all you like, I do) called Are You There God? It’s Me, Margaret in which, in case you were in the 1% of teenage girls who didn’t read it, a girl prays every day for her period. Or something like that. She really, really wants it because she thinks it’ll make her a woman. Which meant that the impressionable 10 year old me ALSO really wanted her period. I sat down in front of one of our kitchen cupboards and prayed (because the church was too far away and what’s more amazing than food? Nothing. I figured it was second best). I prayed for my period to come and a few weeks later it did. Of all the things I’ve resented in my life; Crocs, Dane Bowers’s smug face and serious shit like wars, periods are still the biggest chip on my shoulder.
When I was around 14, I started getting extremely heavy periods. At one point I was wearing two towels and a tampon to bed just so I wouldn’t spoil my sheets. I wore trousers to school to save any kind of ‘leakage’ embarrassment but unfortunately, I often did bleed through them. I’d clutch my stomach in class just to put some pressure on and I lost count of how many times teachers took me aside and asked if I was pregnant. I guess a slightly bloated, sweating, gently weeping teenage girl clutching her stomach did give off preggers vibes.
When I spoke to my doctor about it, he put me on the pill. It didn’t work but I did get some LOVELY spots. Really enhanced my features. He put me on a different pill, which also didn’t work. Didn’t make a difference at-all but it did really bring home to me how much I hated responsibility. One tablet at the same time every day?! I couldn’t even remember when the soaps were on.
Eventually, I gave up speaking to doctors. I moved away from home and even 40 miles away, my doctors thought I was being overdramatic and hysterical about periods. One even said ‘well, dear, periods DO hurt’. I FUCKING KNOW THIS, THANK YOU. Sex was agony, I had to grip my stomach just to stop it being as sore. Afterwards I’d cry and there’d be a bit of blood, every time. My periods just got somehow worse, I was getting through an inordinate amount of towels a day. I just couldn’t face seeing a doctor again, though. I felt like I WAS overreacting.
Last year, I got a hell of a lot worse. Along with painful periods, painful sex and so much blood loss, I also couldn’t handle any foods. At any time of the month. I was always tired, always sore and it depressed the hell out of me. I mean, obviously it did. No food, no sex and not enough hot water bottles in the world. I went to my new doctor who had been lovely in the past and I told him everything. Every little disgusting detail. I cried as well because I thought he was going to put me on yet another contraceptive (I’d also been on the implant at this point- STAY AWAY is my advice). I had the coil in, the copper coil and it was grand. I didn’t need more contraceptives, I needed somebody to listen and he said quite simply ‘I’m astonished that no other doctor has recognised these symptoms as Endometriosis before’. He referred me on to a gynaecologist who booked me in for a diagnostic laparoscopy (this is abdominal keyhole surgery involving a small tube with a camera on it).
It was fine. It sounded scary but honestly, the procedure itself was a doddle. I actually liked going under, it felt amazing. Once I came around though, the surgeon told me that I did have Endometriosis. The tissue from the lining of my uterus was covering my bowel, womb and ovaries. It couldn’t be removed with lasers because there was too much and I was infertile. Well. Not infertile. I can create babies but I can’t carry them. Rather me than someone who desperately wants them, I thought. I’m a cat lady and I love my kitties. I can cope with just having them around. I’ll deal with the future when it comes, I thought. I still do think that way, really. What I was more concerned about was what came next. What did I need to go through to have this fixed?
Two months later, I got my answer- more surgery. This one would be invasive and would be removing all Endometriosis tissue as well as fitting another coil, the Mirena coil because it minimises periods apparently. I was nervous about this surgery. I didn’t know how sore it’d be, I didn’t want to stay over in the hospital and well, I didn’t want to die during it. (I prayed for my period, we can conclude that I’m a little dramatic.) The surgery went fine. They found a cyst on my ovary that was actually dragging my ovary down which meant I had to have a drain fitted. The nurses were absolutely lovely and helped as much as they could with anything I needed. There’s nothing dignified or nice about being helped to the toilet while you have a drain hanging out of you but they somehow made it simple and Not A Big Deal. Staying over was traumatic but only because I couldn’t get to sleep for all the machines and did’t know I could ask for sleeping tablets.
Two months later, I’m recovered. I have no stitches left, I haven’t passed out from the pain of any period I’ve had and I can eat now without running to the loo straight after. The most upsetting thing is still that I can’t have children but not being taken seriously comes a close second because had I been taken seriously when I was younger, I might still be able to have children and wouldn’t have lost years of my life to such a horrible disease. Endometriosis is extremely common but rarely spoken about and I wrote this to raise awareness, really so that other women who recognise these symptoms as their own can get help.

8 thoughts on “TMI: Endometriosis

  1. I was also diagnosed with endometriosis and told I wouldn’t be able to have children. I now have a 16 year old and a 6 year old. So yeah. But you have the Mirena so you would be covered on that front. Thanks for sharing your story.

  2. Yep, this is quite similar to my experience. Was put on almost every pill in existance and it wasn’t until almost 15 years later that i found someone to take it seriously and thus discovered endo. Its sad to realise that my experience was not uncommon. Thanks for sharing, because until doctors wise up and start to help us, we should try and help each other. Cheers.

  3. In defence of the implant: I’m about to have my third consecutive implant inserted. I never got on with the pill ALWAYS forgetting to take it and NEVER enjoying the periods.
    Although me periods are sporadic they are lighter and less painful and I find SUCH peace of mind in being double-Dutch. It’s not for everyone no, but it’s worked a TREAT for me.

  4. Actually I love my period and absolutely feel like dancing and skydiving on my period – lets not add to menstrual taboos or generalisations, after all it’s one such generalisation that affects women with endometriosis; the idea that periods are supposed to be painful, cramps or discomfort are ‘part of being a woman’ so we should just suck it up.

    Many women think cramps are part of being a woman so don’t look at means of preventing cramps (dietary changes, stopping tampon use, herbal treatments to regulate hormones, etc.), but worse still many will suffer with endometriosis thinking that it’s normal to be in pain like this during menstruation…and if they seek medical attention doctors can dismiss their concerns as ‘part of being a woman’. This is also one of many reasons why I have serious problems with doctors prescribing hormonal birth control for any and all menstrual problems, it’s generally hugely problematic but looking at women who suffer from endometriosis it can mean delays in tests and more effective treatments.

  5. You prayed to the food – that’s hilarious! :D Have I said that the TMI series is totes awesome?

    Interested to read Bloodheart’s comment – first time I’ve heard anyone say sie genuinely likes hir period!

  6. The vast amount of times women are not taken serious about their own bodies infuriates me. I had PCOS for YEARS and went to the doctor many times, “well some spotting in a cycle is normal” – NOT EVERY DAY FOR MONTHS YOU MORON. It took 3 doctors before one suggested this solution. (And lets remember the symptoms were IDENTICAL in my case to cervical cancer.) Some medication, diet adjustments etc and I still have cystic ovaries – but no longer suffer daly with symptoms.

    Also read any article about women and breast cancer – most will begin with an initial consultation where they were told ‘ nothing to worry about’, or. ‘well, these lumps do happen with breastfeeding’ – or some other placatory crap. Placatory crap which negates how much stress, thought and time has gone into turning up at that appointment, in that waiting room, talking about intimate parts of your body. We, collectively as HUMANS, not only women, do not do this on a whim. We have real concerns that are frequently dismissed.

    End of rant.

    Great article, the TMI series is so often things really worth saying. Thank you.

  7. I’m 20 and had ‘my’ laproscopy two weeks ago. My periods were agony, I couldn’t get out of bed and the amount of fucking blood…seriously. But the only reason I knew to say anything was wrong to my doctor was that my sister, who’s seven years old than me, had gone through it as well, though for a lot longer because she didn’t realise (and it’s not that shocking to think) that her period pain was abnormal. She has the Merina and I’m on Depro injections which are working so far (touch wood).

    It’s pretty confronting to be told at age 20 that you might not be able to have kids, and I fall into the ‘desperately wants kids’ camp. However after surgery my gyn told me I have ‘beautiful ovaries’ despite the endo and is confident about my chances.

    My mum also had endo it turns out, but as another example of doctor’s giving bad advice, HER doctor told her to ‘have a baby and it would go away’. She was 21. As it turned out, when she had kids later in life it DID go away, but that’s hardly the point.

    Anyway, thanks for sharing your story and giving me a place to share mine. One of the things I realised going through this was that it was annoyingly hard to talk about – not because I was shy about talking about it, blood and guts and vomit doesn’t phase me at all, but people ask ‘why are you going into hospital’ and when your reply is ‘a laproscopy’ and then you have to explain what that is, people get this funny look on their face like they don’t want to know any more.

    I’m so glad you’re feeling better, endo sucks.