A note: this is my lived experience. I am not dragging my doctors. I am not an expert on this subject. This is simply what I have been through.
I realised when I was writing my recent posts that I basically did vanish for a year after saying I’d be writing more, but it’s hard to function normally when suddenly, your body turns against you.
I’m one of many folks around the world who have experienced endometriosis and I was definitely one of those whose concerns were dismissed by many doctors before one finally listened. It’s a horrible, misunderstood condition, and the way that some doctors don’t even seem to know what it is is… a little worrying.
My periods started when I was thirteen, and from the get-go they were bad. I mean ‘had to wear nighttime pads during the day and needed prescription painkillers’ bad.
Back then I was deemed too young for birth control so the solution was to tell me ‘that’s how it is for some women, sorry’ and carry on with the painkillers. I was even told that having children would help with the pain and the heavy bleeding – imagine being fifteen and having a doctor tell you that!
Well, sorry doc, but I decided I wasn’t ever going to have kids.
In my 20’s at least I got on birth control, but all that did was make my periods come at a more regular time. I was still having heavy ones, and while I’m no medical expert, I’m fairly certain that being on the various versions of Pill is supposed to make them lighter. The only upside was that the pain seemed to tail off a bit, and when I was switched to one pill that I took for three months and then had a pill free week (I forget the name) my periods were lighter.
With the lighter periods came a whole host of side effects, the main one being weight gain and low moods. I hesitate to say depression, because that’s serious, and I was merely unhappy. I assumed this was the trade-off, and coped with it.
I first mentioned to my doctor about maybe having a hysterectomy when I was 27 and kind of fed up of being on birth control. I was told I was too young and they didn’t want me to ‘regret’ my decision ‘when the time comes for you to start a family’.
Apparently in 2008 the words ‘but I’ve already decided I don’t want children’ were meaningless, and I was told to continue taking the Pill and, once again, deal with it. I was incredibly frustrated, but decided to stick with the Pill, which at least made things a bit more bearable.
I eventually got fed up with being unhappy and stopped using the Pill in 2019. I was 38, and decided to take the ‘wait and see’ route with my periods. As they regulated back to normal, they were still heavy, but the pain wasn’t half as bad as it had been when I was younger. This, I could deal with. Over the counter painkillers were just fine, and my extensive collection of hot water bottles was deployed when needed.
And then, hello 2020, hello pandemic, and hello the most disruptive two years of my life. I was in shielding for the whole of the pandemic. My grandma died (not of covid). My cat had to be put down. And I started on new medication for my crohns.
My periods chose the start of 2021 to go back to their teenage ways. Pain I couldn’t cope with, and insanely heavy flow as well. I speculated for ages over what could have caused this – all the pandemic stress, the vaccines, my new meds… I drove myself a bit crazy, if I’m honest. I was in a ton of pain and I wanted it to stop.
Eventually my tolerance snapped and I contacted my GP. She recommended that I have a coil fitted, which I said no to (I was DONE with birth control) and decided not to do anything and just suck it up for as long as I could. I didn’t want to suggest a hysterectomy because I thought I’d get brushed off. Past experiences stick, you know?
But everything got worse. I was out of action for a minimum of a week every month, either with pre-period agonising back pain or with cramps. I literally couldn’t function.
The pain was causing havoc with my crohn’s disease too. I couldn’t distinguish between the pain caused by my periods and the pain caused by my gut. That’s a Problem with something like crohns. You need to know where and when your pains are.
I felt like I was losing my mind and I had to do something, so I rang my GP again and laid it out for her. I wanted a hysterectomy, I wanted her to refer me to a gynaecologist, and I was going to get it no matter what it took or how much it cost. ‘No’ wasn’t an option. I was 40, I was single, I didn’t have children and had no plans to have any, and didn’t see why I should, yet again, be brushed off and dismissed and told to ‘deal with it’.
She said ‘okay, there will be a letter ready for you to pick up on Thursday’ and honestly I was a bit stunned. Why had she, and other doctors, danced around and made me take pills I didn’t want for years when all I apparently had to do was go a bit ‘I want to speak to a manager’ with my tone and I got what I needed. Maybe she was getting sick of me and wanted me to go away. Maybe it was because I had hit the magic 40 and was deemed ‘old enough’ for the medical profession to accept that children weren’t on my radar. Anyway, she wrote me the referral and within a week I had an appointment with one of the best gynaecologists in the country.
That had almost seemed too easy, and I was half expecting him to tell me no when I asked about a hysterectomy. I explained my situation, how my doctors were parroting ‘birth control’ to me as the only treatment option. I was on my period for the appointment and when he examined me, he saw first hand how bad the bleeding was. I also cried a bit at him about how I was fed up with being told to ‘deal with it’ and I didn’t think it was fair that I had my concerns dismissed for so long. I said to him that I had never wanted children and the last time I mentioned a hysterectomy, I was told I was too young to have one because I might ‘change my mind’ about having kids.
His response was ‘well, I have to make sure you understand this operation means you can’t have children at all?’ Rolling my eyes internally, I said yes, yes I do. ‘Right. When do you want me to book you in?’
I… what? I was literally speechless. I had been in that consulting room less than half an hour, and I was getting what I wanted.
He was also the only doctor that suspected that I might have endometriosis based on my symptoms. He did make it clear that he wouldn’t know for sure until he got in there, but I didn’t care, I just wanted my uterus gone and the pain to leave me. I hadn’t even considered endometriosis as a reason – I had read about it but after years of being convinced that I was overreacting to my pain because of the way my doctors treated me, I didn’t realise my symptoms ticked all the boxes for it.
My operation was scheduled for a week after I got back from a holiday, which my period utterly ruined for me, so by the time I was being prepped for surgery, I was Done.
‘Rip it out and chuck it into the sun,’ I said to the consultant, when he came to see me before my operation. I was hungry, tired, and mentally exhausted too.
That comment made him laugh, he said, ‘we’ll take some samples and then throw it into a furnace, will that do?’
A fair compromise, I had to admit.
Three hours later, it was all done. I felt amazing. I felt so light, and a little weird because y’know, I was missing an internal organ, but I knew things were going to get better.
The consultant came to see me again after, and showed me the photos of my operation.
Turns out I had extremely advanced endometriosis and it had adhered to ligaments attached to my pelvis, which is why I always got awful lower back pain. It was extensive, all over my abdominal cavity, and honestly was kind of grim to look at. I couldn’t believe it, and was legitimately mad that no doctor, dating back to when I was a teenager, had even considered endometriosis as a reason for why my periods were so rubbish.
I’m still slightly mad, but I think there is more of a conversation around endometriosis now, and menstrual health in general. The amount of complaints I’ve heard from people whose doctors are literally dismissing their concerns about heavy periods and pain is too damn high. The answer still seems to be ‘here’s some birth control, off you toddle and don’t come back’.
That to me is unacceptable and I am a bit mad at myself that I let that happen to me. Mind you, I didn’t know any better. I was a teenager in the 90’s when the ‘suck it up and deal with it’ thing was the answer to a lot of stuff. If you had periods, just deal with it. Don’t talk about them. They’re shameful. They’re dirty.
It sucks that people my age had to grow up with that kind of attitude to menstrual health. I just hope that the generations behind mine get the help they need from their doctor and that doctors attitudes change when someone comes into their surgery and says ‘my periods are ruining my life’.
So how’s life for me now?
Honestly, it’s great. I’m still in recovery, and having to work out what foods I can eat again (some pains turned out to be endo and not crohns… steak is back on the menu, folks) but generally, things are good. It’s nice to not have the monthly visitor, it’s nice not to be spending so much on menstrual products and most of all, it’s nice to feel almost normal again. I have some cute little scars from the operation, which was keyhole, but even they’re healing really well.
Things are good. I’m also a dress size down from before my op, which was unexpected but is down to the fact I’m not constantly bloated. There are, for me, no downsides to this. I can slowly get back to fitness and start having the adventures I wanted to have but couldn’t because I was in so much pain.
I will still forever carry a small stash of pads and painkillers in my bag. I get it, and I will always help out anyone who needs it, if I can.
And one final note, I donated all of my unused menstrual products to a local period poverty program that my local library is part of. They’re great things, especially when we’re deep in a cost of living crisis. If you can afford to donate, have a look to see if there’s a program near you.