No one tells you about the shame of a chronic, diagnosed medical condition.
Okay, they do. We tell each other; on blogs, medical forums, Facebook groups, Twitter, Instagram; really any platform we can bash our fingertips on.
But the ‘specialists’ that diagnose you don’t. At least not to me.
They don’t explain that what you’ve just been diagnosed with will not only spend its time laying low, only to strike any given day it damn well pleases, but shroud you in shame and embarrassment, anger and frustration, desperation and depression, exhaustion and forgetfulness. Cue laptops covered in post-its, endless scribbles in diaries, lipstick memos on the bathroom mirror.
They don’t really tell you about the stabbing, jabbing, punching, aching, twisting and turning of your reproductive bits and anything else those cheeky plasma cells want to adhere to; the constant juggle between taking enough pain relief to stop the pain for all of 4-6 hours and not dissolving your insides with stomach ulcers (okay, perhaps they give you this as guidance on the bottle) and remembering when you’ve taken them; the excuses, the explanations, the self-doubt, the trying to tell yourself ‘it’s really not that bad’ when actually it is days, the ‘sorry I can’t come to work because of cramp’ days, and the absolute horror of feeling totally and completely debilitated.
They don’t give you the nitty gritty that you have to figure out for yourself. The shame of very normal yet altogether downright unsavory vaginal infections, PID, blowfish-esque bloating 20 days of the month because even though you may not get periods as such, especially if you’ve got the coil, oh boy will your body still tell you when you were supposed to have them.
And it really doesn’t matter how old you are, how mature you think you are, how ‘together’ you feel, or even how much you tell yourself that you really don’t care what people think, there’s still that shame and utter humiliation when you lay that box of Canesten on the very slow check out conveyor belt, only to turn around and have sets of ogling eyes scrutinising you for your seemingly poor sexual life choices. Not even post-Covid 6ft social distancing lessens the invisible judgement bubble.
It was only this week that I decided to put 2 and 2 together to get a lightbulb moment. Since mid-2019, I’d noticed that the pain in my lower abdomen was slowly coming back after a seemingly successful laparoscopy in 2018 (more on that below), sex was just a tad more uncomfortable again, blood was showing up when it wasn’t particularly invited and, dare I say it instead of Googling alternative words?!, my discharge was not always stellar.
(The proof that this idea is still taboo, is that my partner cringed at the ‘d’ word when I re-read it back to him and stated that I should have kept it to myself. Isn’t that half our battle? These things are happening to us, but we’re too ashamed to admit it and open up about it because it’s not ‘normal’ but ‘disgusting and dirty’. But it is normal. It’s not the 100% health we want, but it’s what we’ve got, and I’m getting tired and frustrated because my reproductive system doesn’t work like everyone else’s and I can’t talk openly about it without feeling worthless and useless, unattractive and undesirable.)
I’m not really one to get personal about endometriosis. I’ve been there, done that; I’ve done ‘the denial’, ‘the crying’, ‘the endless research to find a “solution”‘, and now I’m just ‘dealing with it’. And who the heck am I to tell you about it anyway, as I sit here at my desk quietly typing away, with a hot mug of tea and a pillow stuffed between my crossed legs bundled down into my lower abdomen for comfort and support with the naïve notion that it’s helping the pain?
I’m a woman with endometriosis. I’m the 1 in 10. The 2 to 10%. Another statistic.
And 3 years on from having the coil inserted and 3 laparoscopies later, I’m in pain.
I was diagnosed with the chronic disease when I was 24. And let’s just look at that word a second:
- (of an illness) persisting for a long time or constantly recurring
So if I really think about it, I’ve had symptoms since I was about 15-16. I was pretty lucky, I hit my period when I was 15. Well, lucky enough. Since then I can only remember heavy 8-day or so periods, hot water bottles, and side-splitting cramp.
When I was at university, I was unlucky enough to experience bleeding after sex (thankfully, I was lucky enough to have understanding sexual partners when those horrifying moments arose) and I thought nothing of it. Just assumed my period had come early and that sex was, well, bloody painful – ‘who’d wanna really do that?!’.
I’d be walking home from lectures, bent-over double on the pavement, thinking how unfit I was because my sides hurt so much from just walking. Thought nothing of it.
I’d been on the pill from 16. They started me on the combination pill – Microgynon – as I assumed they did for everyone that wanted that protection – completely unaware that pumping my body with both hormones wasn’t helping my situation. But I loved it! I mean semi-clean skin? Obviously totally oblivious that some of my skin issue was, and still is at nearly-30, caused by my little friends attached to Ol’ Olga Ovaries. Getting a small say over when I can have a period? Who wouldn’t want to just put it off by a few days to be able to wear that outfit, or go swimming that day?
Ultimately, after 7 years that wasn’t working out for me. The periods were bad. The pain was still there. The mood swings, oh boy were the mood swings ever present. And depression was an unfavourable addition to life every once in a while.
2015 rolled around and this time I listened to my body. After some bed time exercise with a long-time boyfriend, I’d noticed the post-sex bleed had reared its ugly head, the pain was worse than I’d ever experienced, and I was really sore in there. We’ve all been there – you know, that sad pathetic moment when you cry after sex? That was me, because I felt like my body was fighting back from something unknown.
It was my mum that said the ‘E‘ word. Said she had suspected it for a while. Off to the Dr’s I popped.
I was one of the lucky ones. I have close friends and acquaintances that have been waiting years for treatment and diagnoses. I know people who have been battling for years and people just starting to connect the dots with their symptoms. I was seen and referred within weeks. In the meantime between GP appointments and seeing specialists at the hospital, I was put on a progesterone only pill; Cerazette. Same outcome as Microgynon. Solved the period issue to a point, but life was still shit thanks to ol’ Olga and her friends. I’d also been made aware of, and I struggle to say it out loud let alone type it, bacterial vaginosis. Sounds mortifying, crude, unpleasant and unattractive; all the things I felt when I was told I had it. ‘How gross am I?!’ I thought. ‘And my fault too’, I thought. Because no one had helped me piece together the fact that thanks to endometriosis and the way it works, disrupting the pH levels of my inner vagina and all that, that getting it, and the recurrence of it, is something that is just going to happen. Cue me at 29 and living in a tiny town with one Pharmacy and a ‘everyone knows everyone’ attitude, buying your next box of Canesten isn’t exactly secret.
I had my first laparoscopy in 2015. I was 24. They found tissue on my left ovary and removed what they could. They also found some on the right, but not enough to consider doing anything about it. My ‘little’ yellow bloated Winnie-the-Pooh-belly-they-don’t-tell-you-about and I went home to rest. Relieved that I wasn’t crazy about my pain, relieved that there was something there, relieved that something had been done about it.
I was still advised between 2015 surgery and a 2017 GP appointment to continue with the progesterone-only pill.
In addition, by late 2015, it was recommended that I attend counselling. Crying about your complete inability to handle your life in the GP’s office grants you that, and a week’s sick leave, apparently. Because no one tells you about foggy brain and why you can’t remember what you did yesterday, or where you put your car keys – only to find them, after you’ve spent an hour scouring the field you’ve just walked your dog on, dangling from the ignition the whole time, – or why you can’t hold a conversation with someone because you haven’t got the mental capacity, and you just think you’re going mad. The big ‘E’ doesn’t just affect your ovaries, your bladder, your fallopian tubes, your recto-vaginal septum (oh, yah) or even bowels, it affects your entire being.
I’d also started Teacher Training in September 2016, and no one prepares you for that conversation in the interview when you have to explain that you have a majorly inconvenient, hugely debilitating, medical condition, for which you will no doubt need time off because of ‘cramps’. Again, I was one of the lucky ones. My new boss and Headteacher were understanding. Knew someone who knew someone who had it.
Fast forward and it’s 2017. Now the pain was in right side. Shocker. The side they’d left well alone. The GP mentioned the coil could be a viable solution, among others, especially the least-favourable solution I’m sure we’ve all heard; ‘get pregnant’. I can almost feel the anger radiating from you. I agreed to the Mirena coil. I wasn’t great at taking the pill the right way, and this was something I didn’t need to think about for 5 years. At this point I was ready for a full hysterectomy – which apparently at 26 is not to be considered under any circumstances, no matter how many times you cry in frustration at a Dr who cannot fathom why you don’t want to procreate – of your own choice.
2017’s laparoscopy was miserable. Utterly miserable. I woke up from the anaesthetic sobbing as if my body knew the results before I did. When I’d finally come around enough to comprehend what I was being told, I just remember sobbing some more. They’d found more lesions, cells, whatever you want to call the little black spot bastards they show you on those x-ray sheets that hide in your ever-growing medical file. It was worse than they expected. They’d found it had pretty much smothered my right ovary and had a little jolly jaunt to my bladder. They’d not been able to do anything for Olga or Barry Bladder. Not a thing. Nada. Zilch. I was drained. Mentally, emotionally, physically drained. I was beside myself. I cried in the car on the way home. I cried when my mum put my 26-year-old beaten body to bed. I cried when I woke up at various intervals throughout the night when the shoulder pain made it too uncomfortable to sleep. I just couldn’t comprehend how they could have done nothing to remove it.
They were kind enough to insert the coil while I was under, so I have no idea how that’s going to go down when they have to pull it out and inevitably put in another with me fully awake. Future me’s problem I guess. I have another year and a half before the 5 year mark. What you’re not told, or at least what I had to find out for myself through forums, is that the effectiveness of the Mirena coil in subduing endometriosis related pain is good for the first 3 years and then depletes from there on. I hit the 3 year mark in March 2020, coinciding with the time I became fully aware that I’m experiencing symptoms again.
‘We’ll get you on the list to get you back in for another surgery as soon as we can.’ Apparently that’s NHS speak for ‘when you call us to remind us and we get a cancellation, you can drop everything to come in.’ This happened a year later.
Technically 10 months. 10 months of juggling Teacher Training, with 10 months of stress which was no doubt attributing to my bouts of serious pain, with 10 months of a failing relationship with someone who declared at the early hours of the morning that they wanted children. I didn’t. I don’t., and 10 months of explaining, social excuses, brave faces for classes of 30 students, and trying my best.
I remember when I got the call for my 3rd surgery in as many years. I’d made the initiation a few weeks before. Called the GP and went over the symptoms again. Driving home my phone rings; I see it’s the hospital. Obviously, driving safely, I pulled over and take it. ‘We’ve got a cancellation and can get you in, in X days.’ I booked it there and then and called my work. The stress at school was mounting; that week we had pre-GCSE Year 10 Parents’ Evening and I was asking to be excused. I should have breathed a sigh of relief to have such understanding higher-ups and colleagues, but I felt nothing but failure, anxiety and more stress. I spent the next few days making sure everything was covered for my absence and made 30 phone calls home. Some were sympathetic and understanding, some couldn’t believe I was taking time off to sort my cramps problem.
The 3rd surgery was more successful. Liberating even. Most of the BSB (black spot bastards, as I will now lovingly refer to them) were removed and I had to undergo the whole catheter thing for Barry. It was the the most invasive of the 3 surgeries. But now the coil could do its thing and grant me the pain-free life I never thought would be granted. Life was a breeze. I didn’t consider myself to have endometriosis anymore. I was quite delusional even. I felt a little like Smeagol when he got so excited that Gollum had temporarily left him. Like Gollum, Olga’s and Barry’s friends were still there, just lurking, waiting, mocking my total naïvety.
I spent the next few years not having to tell a soul about my ailments. I could happily apply for jobs without fear of having to explain that I’ll be racking up points on my Bradford Factor, old friends weren’t offered BS excuses for my social absences, new friends weren’t privy to my ‘medical condition’, and I could freely travel without worrying that I’d need to take a suitcase worth of Ibuprofen or packets of pills – thank you Mirena.
That’s all changed. Which is I guess where this post comes from. Out of exhaustion, the inability to make sense of how I deal with it this time in a tiny town far from home, frustration that there’s not more I can do than what’s been done and, honestly, raging anger that this is part of my life. I needed a cathartic outlet to reach others just like me and educate those who are not.
I’ve travelled a lot in the last 2 years, finally settling in Yukon, Canada. Only here have I been blessed enough to find more people like me, if you can consider it a blessing? Back home in the UK I felt detached and lonely with my condition, only connected to other sufferers through people who knew people who knew people who had it. I felt more like a 1 in a 100 than a 1 in 10. I now have friends in my inner circle that have endometriosis symptoms; cysts, pain, fatigue. I finally have understanding.
It’s hard living with any chronic illness, disease, condition. It’s harder still when your support network can’t relate, or understand, or think you’re lazy because you’ve been caught having an off day. It’s hard to explain that you can’t physically have a conversation with someone because you haven’t got the capacity to do so. It’s hard to explain that you’re bloated, you’re unsociable, you’re irritable, you’re unmotivated, you’re anxious, you’re stressed, you’re forgetful, and totally disconnected from life, just for a moment. And it’s harder still to explain that all that is because tissue that should be behaving normally and lining the inside of your uterus would like to settle elsewhere in your body, and you can’t quite explain to those BSB’s that this isn’t some episode of Escape to the Country.
Whilst researchers, Dr’s, specialist, scientists, whatever-ists, don’t know why it happens, why so many women are affected by it, or how to find long-term relief solutions, it’s a thing. A thing that more people need to be aware of. A thing that people need to be more considerate of. And talking about the ‘side-effects’ need to be far less taboo than they actually are
because if we can’t say words like bacterial vaginosis without looking like Shrek about to burp, then we’ve got no chance of normalising Endometrosis.