About four or five years ago, I began to notice a change in my life. Every couple of weeks, I would find myself completely physically poleaxed out of the blue. Not only that, but my mental health would take a sharp nosedive off a cliff. 2019 was a particularly bad year for me both health-wise and stress-wise, so I put it down to that. It didn’t actually occur to me that this grinding to a halt of my sunny personality and physical capabilities was cyclical until later, when the pandemic meant regular life was paused and I had more time to focus on myself.
I started tracking my cycle intently in 2020, listing my symptoms on the Moody app and doodling insights about how I was feeling on any given day. My periods have always been regular as clockwork and blessedly light, but it soon became very clear - how I was feeling was related to my monthly cycle, and ovulation and the pre-menstrual period was consistently when I was struck down.
I went to the doctor, who (correctly) wouldn’t give me The Pill because of my hereditary high blood pressure. I decided to go completely hormone-free for a year, and get regular blood tests to check my hormone levels. When they consistently ruled out markers for early menopause, polycystic ovarian syndrome and any other hormonal issue relating to my thyroid, adrenal glands and more, I started to panic.
It’s difficult to describe how I felt every month, other than utterly banjaxed. On a random Tuesday, for example, I would be absolutely fine - good humour, no symptoms, felling great. Then on Wednesday, I would wake up completely drained of energy, like someone had stuck a big pipe in me and sucked it all out. Not only that, but I would be in the absolute horrors. I’d be bed-bound, miserable and in absolute agony in my torso - throbbing breasts, gnawing cramps and worst of all, absolutely horrendous stabbing and grinding pain in my lower back and groin.
I would also be so nauseous, I could barely move. My temperature would spike, and I’d be sweating with chills. The headaches were actually the least of it, and the most easily medicated with ibuprofen and a cold compress. But actually the real worst part of it all was the dysphoria, the only word that could sum up how it feels like you’re a stranger in your own skin. Sometimes on these days, I questioned if I even existed at all. It was that much of a mind f**k.
During the pandemic, I was able to balance my work around it all. But when real-life resumed, I would have to just get on with it. It didn’t matter if there was a deadline, important meeting, awards ceremony, event, someone’s wedding. My body did not discriminate, and I soon found myself building my schedule around my cycle where possible, and just saying no to opportunities on The Bad Days.
And then lo and behold, two days after the symptoms began, I’d lep out of the bed not a bother on me and totally restored to my usual self! The darkness of the previous 48 hours was difficult even to remember. But I had a record of it, of exactly how I’d felt and when, and armed with this I marched back to the doctor.
My GP is a woman, and she’s wonderful. I’m not saying the two are related, but she was able to empathise and most importantly, she believed me and she listened to me. She referred me for tests at the Coombe, and more bloods.
Very long story a little shorter, nothing showed up on an internal and external ultrasound. Everything in my reproductive system looked as it should. I should have been pleased, but I was beside myself. What the hell was actually wrong with me?! It was then I started to wonder if I was imagining it all, or even making it all up. Was the pain all in my head?
Luckily, my sister-in-law is a midwife. She told me to keep pushing to see a surgeon, because that’s the only way they can definitively diagnose endo, or a lack thereof. (For those blissfully unaware, endo occurs when tissue that normally grows inside the womb takes root outside of it, on your other organs. It bleeds monthly and is extremely painful.)
So my doctor and I kept pushing. I decided to go private to the Rotunda, and before long got a consultation with an amazing obstetric surgeon there. She not only listened intently, but she promised me that she would get to the bottom of it. She said it wasn’t normal, and I shouldn’t be suffering every month.
I can’t tell you how good it felt to hear that because, like many women, I had just been accepting that I was unlucky, that it was part and parcel of being female. Thankfully, I personally wasn’t worried about any fertility issues, but I can’t imagine the terror of suffering like that and also fretting that it meant you might not be able to conceive easily, or at all.
I actually remember thinking at one point that I should be GLAD that my period was only bad in my late thirties, that other people I know have suffered every single month since they first got theirs.
I was very scared about the surgery, which was going to be an exploratory laparoscopy. I’d never been under general anaesthetic before, but the surgery was necessary to find or rule out endo, and also to just see what was going on in my womb. If the doctor found endometrial tissue, she would remove it and because I’m not trying to conceive, she would place a Mirena coil in my uterus to both prevent pregnancy and treat the symptoms I’d been experiencing.
I’d tried the Mirena when I was 30, and had it inserted when I was awake which was a wholly barbaric experience I mostly try to forget. A confluence of events led to me having it removed, mostly the fact that I had to undergo LLETZ treatment on my cervix. But that’s another story! Basically, I had never given the coil a chance, but the surgeon believed it was the best course of action now. Mirena is a hormonal intra-uterine device (IUD), and works by emitting the hormone progesterone not in to your bloodstream as the Pill or Patch or Injection would, but right in to your womb. It essentially keeps things steady in there with no cyclical peaks or troughs, and prevents you from ovulating in the first place.
I had my surgery on September 4th. The doctor didn’t find any endo, but she did find a (blessedly benign) cyst covering my entire right ovary, which she removed. She also inserted the coil. The surgery was actually absolutely fine, the staff in the Rotunda are incredible. I was fairly off my box that day, and was instructed to rest for two weeks and take over the counter pain medication as needed. I had to dress and clean the three incisions made for surgery - one in my belly button, one above my pubic bone and one on the left side of my abdomen. It’s keyhole surgery, so they’re small and already healed up.
I cannot tell you how much better I feel just two months later. I’ve had two periods, and not only did they not floor me, I did a 10km walk one of the days it arrived. It takes six months for the coil to fully settle, and in time, I may not get a period at all. At this point, I’m comfortable saying that I would highly recommend anybody suffering to go and see a surgeon if you can. I’d say I was tired for about three weeks post-surgery, but it was absolutely worth it.
My diagnosis is primary dysmenorrhea and PMDD. My condition can only be diagnosed once everything else is ruled out, and it basically means extreme and chronic menstrual pain and dysphoria, which accounts for the feeling of feeling uncomfortable in my own skin. The cyst appears to have been an anomaly, and hopefully won’t return. Thankfully, the Mirena is the prescribed and recommended treatment for both. It will remain in my uterus until I am 44 years old, and I can then have it replaced for another seven years. It’s safe to have in during perimenopause and menopause.
I’ve had my period since I was 11 years old, and who knows for how much longer. I’ve accepted the symptoms that come with it as they worsened and turned very dark because as women, that’s what we’re told to do. On this journey, I’ve learned that until not so long ago, it wasn’t recommended to give a woman who hasn’t given birth an IUD - not for any real reason, it just wasn’t the done thing. I’m lucky that this happened to me now, in an age when doctors are more open to listening to women, and when our periods can be hormonally managed.
The main thing I’ve learned is that you do not have to suffer. Something CAN be done, and will be if you advocate for yourself. Women are expected to be supernatural beings, raising families and working and doing everything they want to do and should be able to do, all the while dealing with monthly issues that do not affect men.
So if you’re experiencing anything beyond a little cramp or a bit of tetchiness one or two days a month, please go and see your doctor. I feel SO strongly about all of it now. You’re not making a fuss, you’re not being difficult, it’s HIGHLY unlikely you’re imagining it or exaggerating. You can take all the supplements and painkillers in the world, like I did, but they’ll only mask the problem.
Women are amazing. Look at what we accomplish with the odds stacked against us. If you want to talk or get a recommendation for my surgeon, please reply to this email or DM me on Instagram. I’m here to help! xoxo
Loved reading this (though did not love listening to what you've had to go through, I'm so sorry) – I have a cyst (also blessedly benign) on my right ovary currently that's about the size of an orange, and they're 'reluctant' to remove it because it's not dangerous... it's causing me pain and other difficulties and yet I get the feeling I'm just expected to put up and shut up. I need to advocate for myself and push back, because you're right, we shouldn't have to do this just because we're women.
Great piece. So glad you persevered and advocated for yourself and got a satisfactory result. It is not easy to do but so essential. I have not been properly listened to by quite a few doctors (luckily I now have a lovely GP who is a brilliant listener) and several mental health professionals. Back in my late teens, the dismissiveness and lack of empathy of one of those medics impacted my life in a profoundly negative way for a very long time as I hadn’t the life experience at that point to see her gaslighting for what it was. Be your own best advocate is something every girl and woman should be taught and stories like yours illustrate why it’s so important.