‘MY HUSBAND HAD TO SIGN PERMISSION FOR MY HYSTERECTOMY WHEN I WAS 30’
It took 22 years before Amy Roberts was finally given a diagnosis for the crippling pain she’d experienced every month,
According to figures from Endometriosis UK, Amy is sadly just one of 1.5 million women in the UK who suffer from endometriosis – an inflammatory disease which causes tissue usually found in the uterus to grow in other areas of the body. It can cause debilitating pain and, in some cases, infertility.
Yet millions of women still suffer in silence because of the lack of understanding of the condition outside of gynaecology. Even when women present their symptoms to their GP they can be dismissed by doctors – to the great detriment of their health.
Telegraph readers, some of whom experienced endometriosis 50 years ago, were saddened that the issues they faced when seeking treatment are still prevalent today. Here they share their own emotional stories about the condition.
‘Women aren’t being listened to’
Sarah Hogan, 77, had a hysterectomy when she was 30 years old. At the time, doctors told her the procedure was necessary because of a hormone imbalance, but only recently did she realise it was in fact endometriosis.
For the operation to take place, her husband had to sign permission. She had no children, and they had been married for a year. “How times have changed? Or have they? If I had not been married, would my father have been asked to sign?” she questioned.
When her periods began, Sarah endured intense pain for one week every month. At the age of 16, she was internally examined by a consultant with a team of junior doctors present. “I was far too young,” she said.
The pain was so debilitating it prevented her from walking or even standing at times. When she sought help from a gynaecologist, they advised her to play squash twice a week because exercise was “good for period pain”. On the way home from her appointment, Sarah “bumped her car” as she was so distressed.
Dr Ippokratis Sarris, consultant in gynaecology and reproductive medicine, and director of King’s Fertility, said: “To alleviate endometriosis symptoms, lifestyle changes can help. The obvious ones are not smoking, not excessively drinking, and prioritising a healthy diet and exercise. Although this is advice I would give to all my patients, it is not a substitute in itself or any reason to dismiss women’s symptoms.”
Sarah was prescribed the contraceptive pill in her early 20s, which helped lessen some symptoms but not all the pain. When agony struck, she would make excuses to her Manchester-based advertising firm – including that she had fallen down the stairs – out of fear that she would not be taken seriously.
Finally, when doctors told Sarah she needed a hysterectomy after 17 years of painful periods, she was pleased. “I don’t think they even knew what was wrong at the time.”
The cause of endometriosis is yet to be determined. One theory suggests it could be the presence of endometrium cells spreading through the body in the bloodstream or lymphatic stream.
Sarah was frustrated to read that women in 2024 are going through similar problems. “It feels like nothing has changed. It annoys me that they haven’t done anything, that women aren’t being listened to,” she said.
Dr Sarris said: “We need to be more proactive as healthcare professionals and policymakers in taking seriously endometriosis symptoms and actually investigating them. We don’t have perfect investigations, we don’t have perfect treatments, but we have to listen to women when they come with symptoms of endometriosis.”
‘To get the help I needed, I had to insist’
Karen Charlton was repeatedly dismissed by healthcare professionals when she went to them with signs and symptoms of endometriosis, of which the average diagnosis time is eight years in the UK.
While working as a secondary school teacher in Stockton, Karen collapsed in agony while invigilating exams and was taken in an ambulance to hospital. “My whole stomach went into spasm. I was nearly bent double with the pain. I tried not to alarm the children and I staggered into the bursar’s office for help,” she said.
After prescribing painkillers and doing tests on her heart, liver and kidneys, which came back normal, the doctors sent her home a few days later – despite her protests that the pain was gynaecological.
Almost 24 hours later when the morphine had worn off, Karen was in agony again. She returned to a different hospital, where a young doctor performed a pregnancy test as they were worried it could be an ectopic pregnancy. Karen was in disbelief as her husband had had a vasectomy, and she was menstruating.
She was sent home with a bottle of laxatives when the test came back negative. “I was too exhausted to protest. I’d been in hospital five days by now. My period was slowing down, and I was in less pain.”
But six months later, she was back in hospital with the same symptoms.
“The pain was like nothing I’d ever known before, except in the final stages of labour. I staggered out of bed, reeling – and knew I needed help.”
Karen decided it was time to put her foot down and insist on a gynaecological investigation. Once the pain was stabilised by morphine, she threatened that she wouldn’t leave the hospital until she had answers. “I couldn’t cope with being whisked into hospital every few months as a busy woman with a full-time teaching job and two small children.”
A scan revealed swelling around her reproductive organs, and the doctors said they wanted to operate to remove her fallopian tube.
“I sighed with relief that something would finally happen.”
She gave her permission for the surgeons to do any necessary procedures once she was under the anaesthetic. “Little did I know the full impact of that clause.”
When she was brought round, Karen found the surgeons had not only performed a full hysterectomy, but her appendix had been removed as well. “My entire abdominal cavity was riddled. My ovaries were the size of my fists and my appendix was about to burst. The surgeon later told me that there was so much of it, they could have scooped it out with a spoon.”
Karen’s husband, Chris, was “traumatised” worrying about how she would react when she discovered she had lost everything. “But to be honest, I was just relieved the nightmare was over.”
“For months later, I was angry that in order to get the help I desperately needed, I had to insist,” Karen said.
On the diagnosis and treatment of endometriosis today, Dr Sarris said: “It might be different at different points in your life. This will depend on your priorities at the time, such as if you might also need contraception, if your main symptom is pain, or if you want to prioritise getting pregnant.
“The gold standard for endometriosis diagnosis and treatment is laparoscopic surgery. However, this method can be very complex and expensive, and comes with potentially significant risks. Again, it requires a level of expertise not widely available.
“A patient can need psychological support, as not everyone diagnosed with endometriosis will be cured of that pain and the symptoms they have.”
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