The Slow Descent
Whats happening to me and why I can no longer do that
Nothing happens overnight, not really. There are millions of microscopic events that lead up to a life-changing event.
For me, I’ve been diagnosed with severe endometriosis, and it’s quite challenging. But people have suffered far worse with their debilitating and degenerative illnesses. What I’ve noticed, and what this post is about, are the countless subtle shifts that now make me so unwell that I had to watch one of my best friend’s weddings from a balcony.
So, how did I get here? I’ve been battling endo for a long time, since 2016. I’ve undergone surgeries, hormonal treatments, and so on. I had the illusion of good health. In 2020, it began to make a slow and steady comeback. I was in pain—not daily, but often enough for it not to be normal. I was given painkillers. In 2020, a box of 100 co-codamol would last me 3 months. By summer 2023, it would last just under a month, as I was, following a discussion with my GP, taking 8 a day. But that wasn’t cutting it.
I am under the care of one of the best endometriosis clinics in the country, but my request for surgery in December 2022 was denied. Instead, I was sent for an MRI, which showed nothing. Then I was sent to a biofeedback clinic, where they teach you how to manage bodily functions, I shit you not. The whole experience was demoralising. The pain had become so severe that I finally found myself in my local A&E, a different hospital than the one treating me.
They performed an internal ultrasound and found that my right ovary had been covered in endometrial tissue, which, outside the uterus, is like sticky gum. My ovary was now stuck to my pelvis. What was the course of action? Nothing, as I wasn’t at immediate risk of death (a recurring theme to this day).
More appointments at my specialised endometriosis clinic, where they also did their ultrasound and found “nothing wrong here.” When I questioned the results, they reassured me that all was fine. Maybe the A&E was wrong then. This is supposed to be the best clinic in the country.
Over the year, I found myself more and more tired, exhausted, overwhelmed, and sick. I became more anxious, more hormonal, quicker to tears, frustrated, and angry. I went from going out once or twice a week to having to carefully select every event I attended. Since I had largely been dismissed by my healthcare providers at this point, I didn’t know what was wrong, if anything, with me. This made all of the above ten times harder on my mental health. Why couldn’t I go out and be fine if I was fine?
Everything else was blamed—the weather, my diet, my lifestyle, my mental health, my medication. I wasn’t doing something right; it was my fault for not taking care of myself.
The impact on every outing, even a simple dinner, while working full-time, gave my body an exhaustion hangover that took days to recover from.
Waking up in the morning to go to work was horrendous. It was as if I were an old machine, covered in rust (which, I suppose I am), creaking to life. My legs ached, my head hurt, and I couldn’t wear the clothes I used to because I was so swollen and sore. Every morning was a mental battle not to wear my tracksuit bottoms to the office. I was so tender that I couldn’t bear anything else touching my abdomen for the six hours I was managing at my desk.
I began arriving 5-10 minutes late, and my managers disciplined me, despite their claims of being very supportive. One of my biggest problems in all this is that I don’t look unwell. I still get my lashes done, my nails done, invest in skincare and hair care. From the outside, I appear fine.
This problem is twofold. Firstly, people can’t comprehend the contradiction between me looking well and yet feeling awful. Secondly, if I’m so unwell, how can I possibly do all that to myself? The odd comments, “Oh, wow, I could never do that if I were in your position,” were designed to portray me as a beauty champion, but really, they were trying to undermine how ill I was. It didn’t go unnoticed, the hints that I might be faking. The simple truth is that my beauty regimen makes me feel better. It’s also a form of control—I can’t control my rusting insides, but I can control my outsides.
Slowly but surely, my pain increased. It came to a head during a family holiday, where I couldn’t even get out of bed. I sat inside with the air conditioning, watching my pain pills slowly evaporate, like water in the desert. Eventually, it got so bad that I had to see a private gynaecologist. Being in a rather religious country meant that the ultrasound was performed under an icon of Jesus. I never thought my endometriosis diagnosis would involve me whipping my knickers off, in front of Jesus. The photo below is my own, from that appointment.
The doctor found that both ovaries were now stuck to my pelvis, and I was bleeding internally. He recommended I go to the A&E when I got back to the UK.
When I arrived home, I was taken to my local A&E. The usual wait times applied, I was given morphine for the pain, but it did nothing. Finally, I was admitted. My blood pressure was too high to be allowed home, and I needed effective pain relief.
The following morning, I was discharged with blood pressure medicine, hormonal treatments, and stronger painkillers. My blood pressure from the pain is so high that I now have stage II hypertension. The consultant ruefully told me that the NHS, being what it was, meant that while I needed immediate surgery, I couldn’t have it, because agony was bearable, but death wasn’t.
I wrote to my endometriosis clinic and provided all the scans. I called my GP, who signed me off till I had my upcoming appointment with the endometriosis clinic. Finally, finally, the registrar (I wasn’t worth a consultant, apparently) called me. She had looked at my scans and finally, nine months later, she concluded that yes, I did, in fact, need surgery. When would I get it? How long is a piece of string, apparently. She told me my ovaries were so covered in endometrial tissue that I was producing hemorrhaging cysts instead of eggs. I was bleeding into my abdomen every month, and because the endometrial tissue cannot be removed by my body, it grows more and more and I am in more and more pain. My ovaries are covered in weeds so to speak.
I called my GP, who advised that I should really be signed off until my surgery. But because we didn’t know when that was going to happen, it could even be up to a year. We compromised on a month off work. I was largely confined to my home and local area.
Photo by Roberto Sorin on Unsplash
A new challenge was my pain medication; it’s very strong. My pharmacist didn’t have it. He had to order it, which often took time. Then he would put the prescription in, only to tell me to contact the surgery and speak to my GP to get it filled. If I couldn’t get hold of my GP, I was referred to a random locum doctor. I was made to feel like I was a drug addict seeking pain medication.
In fact, one doctor told me that I should be looking to decrease my pain medication following my discharge from the hospital. Unsurprisingly, it was a man. 1It was the first time I had to advocate for myself to simply get the pain medication that I needed to get out of bed in the morning instead I was often made to feel I can drug addict. It was humiliating.
I also had to attend a wedding in Spain. Realistically, I shouldn’t have gone, but I also knew I had to go for reasons that are not mine to tell. I was also a bridesmaid and platonic love makes you do crazy things. I made it to Spain with the help of my family who were coming too, but spent most of it in my hotel room, lying with my feet elevated. Along with nausea, weight gain, and insomnia, another charming side-effect of all of my pills is water retention. Made worse by the flight. See photo below.
I managed 12 hours on the big day but by 2030 I had to go to bed. I was too sore and too exhausted. I couldn’t dance, I couldn’t drink and I was too far from my creature comforts to risk it, as I normally would. I spent most of the rest of the time in bed until my flight back to the UK.
And here I am, so swollen from my flight, I look like an overstuffed sausage. Worst still is that all the water retention is putting weight on my joints, meaning that I effectively have DOMS despite doing no exercise. At this point my reaction to new ailments is more of a stick on the bill mentality. It can get worse, it might get worse, but I’ve no control over it.
I’m also going to another wedding this weekend this time in London, and closer to home. Should I go? Probably not. Will I go, will I attempt to look glamorous, will there be a photograph on Insta of me smiling happily? Yes. Does that mean my pain has magically gone away? No, it means I want to try and enjoy a bit of my life.
None of this happened overnight, if I’d been given surgery when I’d asked, maybe I wouldn’t be living a half-life, if that. Instead, I’m confined to some sort of fleshy prison within myself. My future unclear, my friends fed up, my family frightened. No one can help, because no one can perform surgery. People are impotent and it comes at me in different ways, they lash out, they ignore me because what is there to say and I can’t really go out that much, anyway, they undermine me because - maybe I’m just faking. My fear of Munchhausens was also prevalent, until I told my Doctor, who physically showed me the scans and told me I would be in significant pain.
So now I wait, knowing that next month everything will get worse. Oddly, now I know what’s wrong with me, I’m less upset about it all. I’m not a faker, it’s not my diet, I’m not lazy, It’s not just a bad period. It’s something that happened to me and continues to do so. None of it, is my fault.
An additional problem I was not prepared for is how little I can manage my daily life. For example, returning things I’ve bought on the Internet takes time and energy. Calling the hospital to find out when my appointments are takes time and energy. Fixing things that break in my flat takes time and energy, and I don’t have a lot of time and energy to spare. Things get left by the wayside, and there are deadlines that I cannot meet. Sometimes I have to weigh up whether I would rather lose £60 or make the grueling journey to the post office to return an item. Often, I’ve lost the money. Everything now costs something of myself; it’s a new barrier I have to deal with, and it’s one of the hardest ones so far. How do I allocate my limited and dwindling resources?
I wanted to share this with you all, so that you know what I’m going through, but more importantly if you know someone else going through it, you can offer some support. This is lonely, it’s hard and I couldn’t go through it without any support from my friends, family and ever patient boyfriend.
My ongoing battle with endometriosis has been a rollercoaster of pain and uncertainty. As my health has declined, I’ve tried to be resilient, advocate for myself, and seek support from loved ones. I hope my experiences have shed some light on the often overlooked world of endometriosis and given you some insight into what can happen. If you know someone else going through it, remind them that they’re not alone. No one should struggle through this alone.
Thank you for reading.
Ps, please excuse any typos as I’m typing this on my iPhone in bed in the dark
I could write an entire blog post on the things that male doctors who said to me throughout my time with endometriosis. Including one doctor who told me that he would happily “cut me open” as liked doing surgeries and that it was a “favour” to me.