I had a hysterectomy at 37 after years of agonising endometriosis
For 22 years, I was in so much pain, I was unable to sustain a relationship or hold down a job.
I first saw a GP at the age of 13, the first of many doctors who refused to listen to me, fobbing me off with incorrect diagnoses and invasive treatments. My doctors labeled me hysterical – and eventually I started to believe them, suffering in silence away from my family and friends.
By the time I was finally diagnosed with what is, in fact, a well-known gynaecological disease in 2019, I had almost certainly lost the chance of being a mother.
Endometriosis is an inflammatory disease where tissue from the inner lining of the uterus is found outside the womb. It also affects the ovaries, fallopian tubes and the tissue lining the pelvis, but can appear elsewhere in the body, even in the brain.
According to figures from Endometriosis UK, one in 10 women of reproductive age suffer from it – that’s over 1.5 million people in the UK. And yet, many healthcare practitioners seriously lack understanding of the condition.
A recent survey completed by Endometriosis UK shows that diagnosis times in the UK have significantly worsened over the past three years, increasing to an average of eight years and 10 months. This means a delay in accessing treatment, during which the disease may progress, leading to worsening symptoms and a risk of permanent organ damage.
Seventy-eight per cent of respondents to the survey who later went on to receive a diagnosis of endometriosis had experienced “medical gaslighting” where doctors told them they were making a fuss about nothing and many questioned the severity of their patients’ symptoms.
From my first period at the age of 13, I knew that something was very “wrong” with my body. There was so much blood, I thought the world was going to end. I would sit on the toilet for an hour, waiting for the bleeding to stop. When I had to leave my Cardiff home for any reason, I would have to wear two enormous sanitary towels. I felt terribly nauseous and had painful bowel movements.
But the worst thing was the pain – stabbing, twisting, and heavy. The best way of describing it is that it felt like something was going to fall out of me.
I confided in my mother. She replied that this was normal, that she had suffered the same thing at my age. My sister, three years older, told me: “This is just what women go through.”
At that point, the pain would start a week before my period, and continue for 10 days afterwards. Was it really normal not to want to go school because you would be crying in the loos in pain? To be crying your eyes out on the lavatory at the age of 15, begging for a hysterectomy?
Incredibly, the GP I visited around this time also agreed that what I was going through was normal. “You’re not special,” said the female doctor. She prescribed me Nurofen, paracetamol and mefenamic acid, an anti-inflammatory painkiller. So I told myself I was obviously a wimp and should hide my pain from everyone else and just get on with it. I felt incredibly isolated, as well as terrified about blood leaking through my clothes during my period.
At 18, I went on the pill, which helped with the heavy bleeding, but not with the pain. My GP diagnosed me with irritable bowel syndrome (IBS), because of the gastric symptoms that happened at the same time. I had investigations for Crohn’s and coeliac disease, all of which came back normal. I was put on the FODMAP diet (an elimination diet to identify specific food triggers in sensitive people), and experimented with cutting out all wheat and dairy. None of this helped. When I went back to my GP with this news, the doctor prescribed antidepressants. These didn’t work, and so he upped the dose.
By now I was in so much agony, I couldn’t study properly for my A-levels. I had a boyfriend, but sex was more painful than I could ever imagine. I was too embarrassed to go to my doctor about this – I felt I would just be wasting their time again. My boyfriend couldn’t really understand, but why would he? He was only a teenager himself, so that relationship ended.
Somehow I made it to Southampton Solent University, where I studied criminology. More than once during this period, I was admitted to hospital, screaming with pain, was given analgesia, and sent home again. Every time, the doctors told me I had irritable bowel syndrome (IBS), for which there wasn’t really any treatment.
Why didn’t I do my own research, you might wonder? I had one foray with “Dr Google”, who suggested these symptoms were a dreadful kind of cancer, and so I never looked online again. And besides, the doctors were so convincing with the notion that it was “in my head” that I resolved to keep everything to myself. It was an especially lonely type of torture.
I did have boyfriends in my 20s, though I gritted my teeth in bed and had terrible pain during and after sex, which was not good for my partners’ self-esteem, nor for me. One called me “lazy” because I was unable to get up during my period.
In 2013, I got pregnant and suffered a miscarriage. A week after this I was home alone, when a pain started in my pelvis that was so severe, I was unable to stand. It felt like my uterus was exploding.
I rocked on the floor in the foetal position, crying my eyes out, but the hospital refused to send an ambulance. In the end, my ex-boyfriend came over and took me to A&E, where staff acknowledged my blood pressure was through the roof, monitored me, then sent me home again.
By now, I was working as an executive assistant. Work was torture. So severe was the now-constant pain, I would be curled up in the foetal position on the bus. I suffered hot flushes, which saw me stripping to my underwear in the loos in an attempt to cool down. My boss was unsympathetic: “You just don’t want to be here,” he said. The company sent me to occupational health, who again told me I had IBS and should just “get on with it”. Eventually, I resigned.
In 2017, I was no longer able to manage on my own, so I moved back to my parents’ home in Cardiff. I didn’t want my mum to take on my trauma, so as far as possible, I tried to hide my pain, which meant disappearing to the loo in the middle of dinner. Two years after moving home, my health had deteriorated so much that I lost 2st in two months. I was unable to walk, to cook – even to boil an egg. My life became pain: it was all I knew.
Finally, my family realised there really was something wrong with me, but it took starting a new job for me to discover what it was.
I started in the new job in 2017, and it came with private medical insurance. Over coffee, I fell into conversation with a new colleague, who told me about a health condition she had just been diagnosed with: endometriosis. Her symptoms were the same as mine. The relief was to come later: for now I felt angry and confused.
I demanded to see a surgeon. At first my GP refused a referral, but I had the bit between my teeth: I insisted. And finally, in October 2019, I walked into the office of Dr Anthony Griffiths, a gynaecologist and the most compassionate, empathetic consultant in the world.
Dr Griffiths diagnosed me within 15 minutes. “Everything you are saying warrants a gynaecologist,” he said. He was shocked at how long I had been left to suffer and recommended immediate investigative surgery.
I burst into tears of vindication, anger, and grief. Finally, I was being treated with kindness. Why couldn’t all those other doctors have treated me as well?
The first surgery in February 2020 revealed stage 4 endometriosis – the most severe and advanced form. “It should be called stage 10,” said Dr Griffiths. The endometriosis was deep in my abdomen and bowel: my whole abdominal wall was fused together. He said it was one of the worst cases he had ever seen, and I was eventually diagnosed with adenomyosis, where the lining of the womb starts growing into the muscle in the wall of the womb. The television presenter Naga Munchetty has adenomyosis.
When my parents heard my diagnosis, they felt appalled and guilty that they hadn’t taken me seriously enough over the years. But my family and friends immediately rallied in the most supportive ways.
Over the next two years, I had a couple of surgeries to remove the endometriosis, but even after treatment, it kept growing back – on my bowel, uterus and ovaries. In the end, I was told the best treatment was to have a hysterectomy, the endometriosis and adenomyosis having done their damage.
At the age of 35, I was asked to make a decision that meant I would never be able to give birth to my own child. I tussled long and hard with this, but in the end, I agreed to the procedure. I was single and didn’t want to have a baby on my own. At that point, I was in so much pain, I couldn’t walk a dog, let alone bring a child into the world. Before the operation, I was offered the option of freezing my eggs and I did so.
My hysterectomy in April 2022 brought immediate benefits – as far as the pain was concerned. My agony reduced by 75 per cent. But I wasn’t prepared for the immediate surgical menopause.
The doctors had suggested I wait six weeks before starting hormone replacement therapy (HRT), as starving the endometriosis cells of oestrogen would kill them off more completely. But the sudden menopause unleashed a whole new hell: arthritis, hot flushes and suicidal thoughts. When I finally received a private HRT prescription, my GP argued they couldn’t provide this and so I had a whole new fight on my hands.
Two years on from my surgery, I’m doing OK. The hysterectomy has given me my life back at the age of 39: I still have pain, but I suffer less. But I am still angry: so many years of my life have been wasted: if I had been diagnosed earlier, I could have had a child. The quality of my frozen eggs would be higher. But I am also furious on behalf of the millions of other women who have been ignored and gaslit for so many years.
For this reason, I now advocate for those with “endo” through a support page on Instagram @fck_endo and hope to provide them with a much-needed voice. All women want is to stop being dismissed and sent away with ineffective treatment options. We no longer want to be belittled and ignored.
As told to Miranda Levy
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