WOMEN in Scotland are being given hysterectomies to treat the torment of the womb tissue disease endometriosis, though the disease is one that can come back even after this extreme procedure, and experts say it is not a “cure”.

42-year-old Sarah Kish is one woman who went through this. When, three years ago, she had a hysterectomy, she thought that would be an end to the agony brought to her by endometriosis. But, a year later, almost broken by pain, she had keyhole surgery and learned that the disease she calls “endo” was back.

That this might happen, she says, was not something her gynaecologist had ever told her. “He never at any point told me it might come back. There was never a discussion of that. I trusted the medical professional. He was a gynaecologist of many years, so I trusted him. I thought to myself, if this is what’s causing the problem, let’s get rid of it.”

Kish now warns women with endometriosis to be cautious about having a hysterectomy. “I say,” she says, “try everything before you have a hysterectomy. Because then you’re dealing with menopause as well as endometriosis.”

The disease, in which the tissue that lines the uterus grows in places outside the womb, affects one in ten women of reproductive age - that’s 1.5 million women in the UK – yet it is still little talked about. Those who experience it at its most extreme are barely able to have a functional life. One survey found that a quarter of sufferers have contemplated suicide. Depression is common. Women are willing to contemplate desperate measures.

Hysterectomy, as a “cure” for those suffering from endometriosis, received a great deal of publicity earlier this year, when Girls-writer Lena Dunham published a Vogue piece describing how she had checked herself into a clinic saying that she was not going to leave until “they stop this pain or take my uterus”. She sensed, she said, her uterus was “defective”. In Scotland, from 1981 to 2010, around 4000 women who had had endometriosis, diagnosed by keyhole surgery at this time, had a hysterectomy with removal of both ovaries – though the data does not detail whether this operation was specifically for endometriosis.

Yet, there is an increasing number of endometriosis experts who say that this often complicated and life-changing surgery is neither a cure nor a treatment for endometriosis. Among these is Professor Andrew Horne, clinical lead of EXPPECT, a multi-disciplinary pelvic pain and endometriosis centre in Edinburgh and author of Endometriosis: The Experts Guide To Treat, Manage And Live Well With Your Symptoms. "I can see,” he says, “why women with endometriosis might hope that hysterectomies are the answer to years of suffering, but there’s no clear evidence that hysterectomy is a cure.”


Sarah Kish belongs to a growing sisterhood of “Endo Warriors” who are drawing attention, on social media and other platforms, to the ravages of the disease. She compares the silence around it with the high-profile fundraising effort and sense of sisterhood that has been generated around breast cancer. “I don’t want to negate what they have. I am delighted that we’ve done the right thing by women in this part of women’s health. But this is a big, big space that has to be addressed.”

Kish believes that in Britain we are far from recognising the disease properly. “An American politician has called it a ‘public health emergency’. Australia’s health minister came out the end of last year apologising to women and setting up a national plan for treatment. We’re very behind in this country. That’s partly because we don’t talk about women’s health. In 2018 and we’re just only now addressing the fact that young girls don’t have sanitary towels to go to school. ”

“There are,” she says, “a lot of gender inequality issues around this subject.” As a teenager, she recalls, when she started her periods, her mum bought her a card saying, “Now you’re a woman.” “What does that make me now I’ve had a hysterectomy? Am I not a woman now?” In fact, says Kish, so great has been her suffering that there have been times that she has wished she was not a woman at all. On occasions, she has been close to suicide.

The pain began for Kish when she was just 14 years old and had her first period. “It was traumatic,” she recalls. “I was screaming with pain. I was missing school. I was put the pill, but that only took the symptoms down a bit. I wasn’t able to talk to school friends about it. At school, sexual health was hardly talked about ¬ I was in quite a deprived school. I also grew up in a household of boys, with four brothers. You have to hide everything.”

But it was only, decades later, when following “crippling” back pain, she was referred for a laparoscopy – a key-hole surgery investigation - that it was discovered she had endometriosis. That was 2013 and she was then 38 years old and had endured years of experimenting with the pill, hormone injections, coils and other methods to try to control the periods and pelvic pain.

Kish, who was working for Heineken at this time had private health care through her work, so was “able to jump the queue” – and feels that otherwise the diagnosis would have taken still longer. During the laparoscopy her endometriosis was removed. But within weeks, the crushing pain was back, and her gynaecologist put her into drug-induced menopause. Eventually she considered the extreme measure of hysterectomy.

After her hysterectomy, Kish found she couldn’t get well. Her doctors, she said, kept blaming her problems on the menopause. “I was being given oestrogen pessaries and HRT. But oestrogen feeds endometriosis.” At the time she was still working for Heineken. “But I couldn’t cope. I literally was at suicide point. I was so broken and confused. I’d spoken to women who had had hysterectomies for endometriosis, who said it changed their lives. I was waiting for this moment when it got better – and it never got better.”

Eventually she pushed for another laparoscopy. She recalls the surgeon coming to see her afterwards. “He said, ‘Right, so we found it Sarah. I cut endometriosis out of this side.’ I remember when he told me this, I burst into my tears. I’d had a hysterectomy and I could have had a child and now I’ve got it again?”

Kish was made redundant from her job five weeks after the surgery. What she feels is an immense sense of grief for the person she once was. “I lost my job and financial independence. I was a great social person. I have no social life. When I have a good day, I think I’m Kim Kardashian. But there are times that you can’t even shower because it’s so painful.” The one positive, she says, in the middle of all this, has been her referral to Andrew Horne’s EXPPECT Pelvic Pain Centre, which has already helped her enormously.

Kish describes herself as “hardy”, from a “family of boys”, a workaholic and party animal, the kind of woman who would run twice round Arthur’s Seat on a Sunday. Now, however, she is only managing this interview because she is on morphine. “My flare ups are becoming so bad that I thought last time, I’m going to die.”

Among the things that she wants to see change is attitudes towards women’s health in the workplace. She recalls how recently, she posted her endometriosis story on Linked In. “I got 6000 views. I then put up a second post saying that that the workplace need to change its attitude towards women’s health. Because women’s health is here to stay. It’s not a dirty word. Menstruation, menopause, pregnancy – we have to start talking about these things.”


In endometriosis, womb-lining tissue attaches to and grows on other internal body sites.

Endometriosis expert, Professor Andrew Horne believes that one of the problems for endometriosis is that “historically it’s been underfunded, especially given how common it is if you compare it with other non-malignant conditions like diabetes and asthma which are equally common among women… I think it’s also slightly suffered because people don’t really like talking about women’s health problems.”

The disease has a clear genetic component and runs in families. “But,” says Horne, “we haven’t identified a specific gene or family of genes.”

It takes years, for most women, to get a diagnosis. Horne says, “The figure that’s quoted is that it’s an average of eight years from presentation of symptoms to a doctor’s diagnosis. I hope that this is now shortening. The main problem has been lack of awareness amongst doctors and, indeed, women themselves, as well as the fact that it requires keyhole surgery to be diagnosed. I hope that that’s improved. There are ongoing campaigns to educate doctors and the general public.”

Andrew Horne and his team believe that the kind of drugs that have been developed to treat cancer could be part of the answer. “Endometriosis isn’t a cancer,” he says, “but it behaves like one. What we’ve done is look for drugs that have potential as treatments for cancer that might also work for endometriosis. Some of the drugs that we are testing have never been used in cancer. And what we don’t want to do is scare women with endometriosis by saying we’re using anti- cancer drugs We’re testing them in laboratory models of endometriosis with a view to starting trials in women very soon. “