When I was 19, I took a taxi to A&E, convinced my appendix had burst. Bent double in pain, I gripped my lower abdomen as fat tears soaked the neck of my favourite jumper.
After blood tests to rule out pregnancy or infection, the A&E doctor swept into the cubicle and asked: “Are you menstruating?” I told him I was, and he shook his head. “Dear, I think you’ll find this is just period pain.” My face burned with embarrassment. I felt like I’d wasted everyone’s time, that I was overreacting.
That first trip to the hospital began a 20-year fight with my womb. Years of pain and heavy bleeding were dismissed and minimised before a diagnosis of uterine fibroids (non-cancerous tumours in the womb) and endometriosis. But the struggle ends this weekend when I have a hysterectomy at the age of 39.
As a new report calls for ‘urgent improvement’ to endometriosis care, a doctor answers our questions about the debilitating condition
By my mid-20s, life was dominated by my monthly cycle. I spent two weeks dealing with spasms of intense pain combined with migraines, bloating, diarrhoea and a constant need to pee. I spent the rest of the month bracing myself for the next period.
Every part of my life was affected by periods. When I was bleeding, pain consumed my every waking thought and sometimes made me wonder if life was worth living. I was labelled unreliable by bosses because some days, I just couldn’t stand up straight, let alone commute to work. I became the flaky friend who cancelled plans at the last minute. I’ve been single for over a decade because I barely had the energy to function, let alone date.
I lost count of the number of GP visits, how many times I was told pain was ‘part of being a woman.’ When doctors didn’t take me seriously, it made me question my sanity. Was this pain all in my head?
By 35, I was on a cocktail of prescription painkillers and anti-inflammatories to manage my symptoms. But I’d had enough; I wasn’t overreacting; my pain was real. So, I went to my GP and insisted on a pelvic ultrasound. Grudgingly, he referred me.
I’ll never forget the gasp from the sonographer as she passed the ultrasound wand over my abdomen. She pointed out large masses in my womb before carrying out a transvaginal ultrasound. She told me I had several lemon sized fibroids and some endometriosis. I began to cry with relief; it wasn’t all in my head.
It took 17 years from my trip to A&E to see a gynaecologist. She reeled off a list of possible treatments: medication to shrink the fibroids, surgery to remove them and the last resort, which was a hysterectomy.
The following 18 months saw me try several remedies, including a clinical trial of medication that I had to discontinue because it made me feel suicidal – but I was eventually scheduled for minor surgery to remove the fibroids and treat the endometriosis in April 2020.
The week after the first national lockdown was announced, I got a call from my consultant to tell me the surgery was cancelled. I asked what would happen next, and she said, “By the time we see you back at the hospital a hysterectomy may be your only option.”
Stunned, I found myself crying when I hung up the phone. While children weren’t part of my plans, a hysterectomy was so final. Before, I was choosing not to have kids, but suddenly that option was taken away. I began grieving the loss of something I wasn’t sure I even wanted.
After that call, I started saving money for a second opinion with a private consultant. I also spoke to friends from online support groups who had chosen to have a hysterectomy. Over and over, I kept hearing: “A hysterectomy was the best thing that ever happened to me.” Although it was major surgery, I learned that the change in my quality of life could be immense. The pain had shrunk my world right down, and I began to imagine a life without those limitations.
I saw a consultant at a local private hospital who took a long medical history, and an examination showed that my womb and fibroids had grown dramatically. It was now too late for the original surgery. There were non-surgical options available, but any relief would be temporary. I looked at the consultant and said, “What are your thoughts on hysterectomy?” He replied, “Hysterectomy is the only thing that will cure you, but that’s a big decision.”
‘Because of my endometriosis, I lost my baby – and was fighting for my life – just hours after finding out I was pregnant’
The consultant arranged injections to place me in temporary menopause to ease my symptoms (which, due to serious side effects, can only be prescribed for up to six months). The hot flushes, brain fog and mood swings were not fun, but after a few weeks, I woke up and realised the familiar pain that dragged me down wasn’t there anymore.
When I spoke to friends about a possible hysterectomy, instead of shock, I received support. One compared my womb to an abusive partner and told me I was better off without it. Every day for a month, when I woke up, I asked myself, “You have an option to end this agony. Do you want to take it?” The answer was always yes.
I arranged the hysterectomy for the end of July. Instead of sadness, I felt overwhelming relief. Although it was undoubtedly the hardest decision I’ve made, as soon as I said I wanted to remove the organ that had ruined my life, I felt a weight lift off my shoulders.
The lead up to the operation has been emotional, partly due to hormonal fluctuations but also because after living with pain for half my life, it’s become part of my identity. After years in a bubble of suffering, I’m opening up my life to the new and unknown. It’s scary but exhilarating.
I’m so hopeful and excited for what’s next. I recently visited a chiropractor who is trying to fix a body that has held onto too much pain for too long. He told me I was ‘walking around in a lead suit of pain.’ I’m ready to shed that suit now.