Fibroids made me feel like aliens had invaded my body.

My experience with uterine fibroids. 

It felt like aliens had invaded my body.

I’ve thought twice about sharing my personal health experience online. It’s true that people go through much worse, and this story has little to do with East London. However, when researching fibroids, I found them to be a relatively invisible issue in the dialogue around women’s health. So I’m sharing my story in the hope of raising awareness about uterine fibroids. If it helps even one person, it’s worth writing.

Read on to find out what fibroids are, who they affect and the symptoms they cause. I’ll talk about what it was like to wait 75 weeks for NHS surgery, and why a 15cm fibroid weighing 1.2 kilos made me feel like aliens had invaded my body. I’ll also cover the open myomectomy process, and have a little moan about the UK healthcare system. Please know that this is just my personal experience with fibroids and won’t reflect everyone. Someone else’s experience could be vastly different. I’m not a doctor, and NHS care depends on the hospital.

How it started

In March 2022, I began to feel a regular pain in my lower abdomen. Sometimes it felt intense, like a bowling ball was slowly sliding down my pelvis. Other times, a background ache. My stomach looked swollen and was rock hard to the touch. I constantly needed to pee and was gaining weight rapidly, despite not changing my appetite or active exercise routine. After a few panicked pregnancy tests (all negative), I decided that either my metabolism was slowing down, or I had developed a gluten intolerance. 
There were other things too. Irregular bleeding, nausea, fatigue and leg pain. After a few weeks of buying overpriced gluten free bread that tasted like cardboard, none of the symptoms were going away. I turned to the doctors. Cue months of all sorts of tests before eventually being referred to the hospital for an ultrasound in July 2022. Although I wasn't growing a baby, I was growing fibroid tumours. 4 of them. Alien Mr Blobbies living rent free in my uterus. One was 9cm, one was 5cm, and two were 3cm. I was told I'd need surgery 'imminently' for the 'very large 9cm fibroid.' At least I could go back to eating nice bread.

What are fibroids? 

Fibroids are mostly benign tumours that grow inside the womb. 60% of women will develop fibroids between the ages of 30-50. Black women are 2-3 times more likely to develop them and 1 in 1000 fibroid cases turn cancerous. Despite this, nobody seems to be talking about them. Experiences are mixed. Some women have fibroids and experience no symptoms at all, while others are affected by infertility, and all the symptoms mentioned above. My Mum and Grandma both had fibroids, so I think it was inevitable I'd get them, but it doesn't always run in the family.
There hasn't been enough research to determine the causes of fibroids, but the general consensus is that fibroids grow when the body produces too much of the estrogen hormone. The online fibroid community believes foods like meat, dairy and soya fuel growth, but the jury is out in the medical profession. FKA Twigs had surgery to remove fibroids twice before switching to a vegan diet, and described 'a fruit bowl of pain every day.' Sharon Stone and Clara Amfo have also publicly spoken of their experience with fibroids.

75 weeks of waiting

It would be 9 months before I heard from the hospital again regarding the fibroids. Given the lack of communication and urgency, I put the problem to one side in my brain assuming 'it can't be that bad' which created a vicious cycle of self-loathing. I was in chronic pain and miserable, waking up most mornings feeling like I'd been in some kind of car crash. My periods either came three times in a month or not at all for 8 weeks. Strangers on the tube would ask "do you want to sit down?" casting well-meaning glances at my swollen abdomen. I felt betrayed by my body. 

I forced myself to keep swimming, even though flaunting my body was the last thing I wanted to do. I remember splashing about in the Bondi Icebergs over Christmas 2022, looking out onto the glint of the ocean and the crashing waves feeling so content, and then a pang of shame getting out. If all this sounds over the top, I get it. It's just a body. But it's one thing to actually be pregnant, and another to be growing painful alien tumours, against your will.

The mess of the NHS

You hear about cuts to the NHS all the time. You hear about the strikes, the rubbish pay, the long hours, the waiting times, the lack of staff. But until you need to use the NHS, I don't think it's possible to truly feel the effects of austerity that ripple across the system.
Scans were cancelled, test results were lost, letters went to old addresses and there seemed to be no joined up communication, or system. I'd spend ages on the phone being passed from person to person, and even then it was difficult to get anywhere. The NHS always called from a private number, and left no voicemail, so missing the call got you back to square one. I began to feel like a needy date chasing an unrequited lover, rather than a patient waiting for surgery I'd been told needed to happen asap.

When I finally attended my pre-surgery assessment in September 2023 (15 months since the initial scan), I thought I'd receive some information at last. At least to know what type of surgery I'd be having and what to expect. Instead, my blood pressure was taken, the result was jotted down with pen and paper and I could go. Three weeks before the surgery, I received a letter informing me that I'd be having laparascopic (keyhole) surgery in December, but even that turned out to be not quite right.

The day of surgery

Eventually, the day of surgery came as it always does and it's safe to say I was a nervous wreck. I don't like hospitals and the experience so far had done nothing to put my mind at ease, and neither would the hours that followed. Walking into the hospital at 7.30am, I was taken to a cubicle and unceremoniously told to put on a gown, hat and socks and wait. Once you're inside the ward, you're alone and time seems to stand still.
After a while, the consultant and the anaesthetist came in and introduced themselves. The consultant felt my stomach and then drew a picture of my uterus (pictured), he told me they'd be able to get the 'massive fibroid', and the second largest during the surgery, but the others were too risky. He also said that it was likely I'd need to have an open myomectomy which is a more invasive surgery with a longer recovery time, and carries risks. They wouldn't know for sure until I'd been sedated. They then proceeded to reel off a list of risks such as hysterectomy, and blood transfusion, and asked me to sign a disclosure to say I was fine with it. At this point, I began to involuntarily cry, silent salty tears rolled down my cheeks. I batted them away. The pair then made their way to the next cubicle and informed the person next to me that they probably wouldn't be having surgery today and would have to wait 6 hours to find out. Suddenly I didn't feel so bad.

Removing the monster fibroid

When you walk into theatre, it's just like in the movies. You see the bright lights, the amount of people, the empty bed you're about to occupy. As I clambered in, the anaesthetist started asking me what I did, where I lived and made general small talk as she hooked me up to various wires and told me she could finally give me some 'gin and tonic.' For the first time, I felt calm. I glanced at the clock on the wall and it was 9:15. Then everything went dark.
When I came to, it was 14.15. I briefly felt a lot of post-surgery pain, before being given morphine, at which point my state of mind turned to exhilaration. The surgery had been a success. I'd had to have an open myomectomy as expected and had a 5cm cut, along with the keyhole surgery. The large fibroid had taken hours to remove. They'd had to cut it into tiny pieces. It was hard and calcified, turning to bone. They sent it to histology for analysis. In the space of a year and a half since the first scan, this fibroid had grown to 15cm and weighed over 1.2kilos, but they think it had been growing for six years in total. By their own admission, it was 'a monster.' They'd also removed another fibroid which had grown to 7cm.  Knowing the operation had gone smoothly and the fibroid was out was the greatest feeling.

Recovery

I was told I'd have to stay in the hospital overnight. I had a catheter in my bladder, and couldn't move from a deck chair position as everything else gave me a stitch. When you have surgery they pump you full of gas, so your shoulder aches, you blow up like a balloon and generally feel rubbish.

For all my nerves, the surgeons did an amazing job, but the care on the ward was almost non-existent. Nobody came to see if you were ok, or offered food or water. You had to ring a loud buzzer which reverberated around the entire ward to get any attention, and when they did come, you'd feel like a nuisance. At one point, a nurse came in and silently started hooking me up to an antibiotic drip. I asked what the medicine was. The nurse shouted "What? You don't trust me?!" I couldn't wait to get out of there. Again, this may just be reflective of the cuts, the specific hospital, or how the staff felt on that day. 

Once I got home, I was on a cocktail of drugs. Daily clexane injections to prevent blood clots, clindamycin antibiotics and codeine for the pain. It totalled about 16 pills a day. The days passed in a haze. Sleeping in any position but upright on the sofa was impossible. Hobbling around while holding my back for support was ok, but touching the ground or lifting things was out of the question and I needed help getting dressed. The whole thing was a lot more emotional than I expected, and it took a while to feel 'normal' again.

Now, and the future

Three weeks on, I'm feeling much better. I can do most things independently, and was thankfully able to celebrate Christmas with a glass of wine in hand. I've lost 3 kilos since the procedure and the symptoms I had have mostly vanished. 

There's a scan coming up in two months to check on the status of the fibroids. In lots of cases, they come back more aggressively, but I'm staying positive and taking steps to manage them holistically. The hope is that by learning more about hormones, and altering my lifestyle, the fibroids might stay away and the remaining two won't grow any bigger.
I'd love it if sharing this experience can help someone else out there who feels something isn't quite right with their body, but defaults to thinking 'it's nothing.' Bodies are complex, and more research needs to be done to understand the root causes, and how we can manage health in a world filled with disinformation.

Thanks for reading! Regular East London programming will resume shortly.