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15 December 2022

“I left in tears”: How misdiagnosis is hurting endometriosis and PCOS sufferers

These gynecological conditions affect one in ten women, but they remain heavily under-researched.

By Grace Braddock

Sophie Flynn was 31 when she had endometriosis diagnosed, but she had visited doctors about the pain she was experiencing since she was 14.

The dismissal from doctors bothered her even more than the wait. One time, “I specifically said ‘do you think it’s endometriosis?’ and it was a male doctor and he was so sneering about it,” Flynn, head of marketing at the online writing club Jericho Writers, says.

That time she “left in tears”, she recalls, “and with doctors I’m quite happy to be my own advocate, but I felt so awful after a year of going through investigative procedures – which are really unpleasant – for them to say ‘there’s nothing wrong with you’.”

Endometriosis affects roughly 10 per cent of women and girls of reproductive age globally, as does polycystic ovary syndrome (PCOS). And yet sufferers are routinely misinformed and have these two gynaecological conditions – which also affect non-binary and trans people – misdiagnosed.

The primary symptoms of endometriosis are pelvic pain and heavy periods. In sufferers, tissue similar to that which normally lines the inside of the uterus grows outside the womb. This thickens, breaks down and bleeds with each menstrual cycle. As it has no way of exiting the body, it becomes trapped. This leads to pain, swelling and sometimes damage to the fallopian tubes or ovaries, causing fertility problems.

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Bell Ribeiro-Addy, the Labour MP for Streatham, had to go to hospital in 2017 due to pain from endometriosis. She still experienced delays in diagnosis and dismissal from doctors. After first visiting A&E, she waited nearly a year to hear back from her doctor about a scan and only when she chased them did investigations start again.

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Ribeiro-Addy had laparoscopy in May 2019 to investigate what was wrong with her, and was discharged straight after surgery despite being in severe pain. “They expect women to leave after this procedure within a couple of hours but I couldn’t stand,” she recalls. After being taken to A&E and given some mild painkillers she was then taken back to the women’s ward where she was told they “really need their beds”. A consultant suggested she just had a low pain threshold, she says.

Ribeiro-Addy then had to go back to her doctor to restart the whole diagnosis process again because no symptoms were detected during the laparoscopy. She eventually got her diagnosis quicker than most, however: “It’s usually eight years for diagnosis and some sort of treatment, and for me it was five.”

[See also: Expensive childcare is forcing women back to the 1950s]

Louise Haigh, the Labour MP and shadow transport secretary, was hospitalised twice due to complications from PCOS. The first time she was in hospital for a week as doctors tested her gall bladder and checked for appendicitis. They completely dismissed the suggestion that her complications could be PCOS related, despite the fact she had had the condition diagnosed ten years earlier.

When Haigh was passed on to the gynaecology department they immediately knew it was PCOS. She was told that a cyst on her ovary had burst and that this could keep happening. Haigh was advised to take paracetamol for the pain; no other treatment or medication was suggested.

PCOS affects how a woman’s ovaries work. The three main symptoms are irregular periods, high levels of “male” hormones in the body, which may cause excess facial or body hair, and small fluid-filled sacs that develop on the ovaries.

Globally, 34 per cent of women with PCOS report a diagnosis time of more than two years, and 47 per cent report seeing at least three clinicians in the process, according to a 2017 survey in the Journal of Clinical Endocrinology and Metabolism.

Kelly Taylor, head of new business and marketing at Creature, a brand consultancy, had PCOS diagnosed after going for fertility treatments, but she felt as though the doctor brushed the condition off. “I just remember being really flabbergasted at the laissez faire attitude to a condition that can lead to some quite difficult symptoms.”

PCOS is also associated with an increased risk of developing health problems in later life, such as type 2 diabetes and high cholesterol levels. Many women are unaware of these secondary health risks. Anoushé Husain, a civil servant and paraclimber, had PCOS diagnosed after ten years of seeking help for the symptoms. She only found out about the increased risk of diabetes and cardiovascular issues by doing her own research.

“Doctors need to explain to women that PCOS is actually a serious condition,” she says. “I’m a South East Asian, I’m already predisposed to things like type 2 diabetes and heart conditions genetically so I should have been told.” Husain believes that all women with a diagnosis should have a blood workout to monitor whether they are developing secondary effects.

A lack of awareness of the condition also impacted Taylor, as on reflection she recognised that she had been experiencing symptoms of PCOS for years. “I had really irregular periods and it’s hard to know when they’re arriving or the severity and length of them,” she says. “I’m quite fortunate that I don’t suffer from any of the hair growth on my face but I struggled to lose weight and with acne. All those things I thought were just stress or lifestyle.”

Dr Stephen Franks, professor of reproductive endocrinology at Imperial College London, admits there is still a lot of misunderstanding of PCOS that leads to patients being dismissed or misinformed. “Awareness among GPs and even among specialists, for example, general endocrinologists or general gynaecologists, is not great. There’s a big spectrum of presentation and some women who have been diagnosed milder in spectrum, they’ve been told horror stories about fertility and there are others who have not been diagnosed and then had real problems with lots of unwanted hair or problems getting pregnant.”

According to Edward Morris, president of the Royal College of Obstetricians and Gynaecologists: “Awareness of common gynaecological conditions has grown, but the causes of many still remain unclear. Research in women’s health has historically been, and still remains underinvested. This lack of research has contributed to the long diagnosis times and poorer treatment options for conditions such as endometriosis and polycystic ovary syndrome, leaving women struggling with challenging symptoms that impact their health as well as their quality of life.”

The Women’s Health Strategy for England, published this summer, sets out the government’s ambitions for improving how the health and care system engages with and listens to all women and girls over the next ten years. A key ambition is that people who suffer severe endometriosis experience better care, and diagnosis time is reduced. PCOS is also highlighted. A Department of Health and Social Care spokesperson said that “menstrual health and gynaecological conditions – including endometriosis and PCOS – are priority areas within the strategy”. This year the National Institute for Health and Care Excellence (Nice) will also review whether the guidelines on endometriosis need to be updated, and whether guidelines on PCOS can be developed.

Haigh says it’s good to see the government starting to recognise the lack of awareness and research in this area. But “so much more needs to be done”, she says, pointing out that the cause of endometriosis is still unknown.

Ribeiro-Addy also calls for more action from the government: “The idea that there’s way more research and development being put into whether or not a man can have an erection compared to whether or not over 51 per cent of the population can function is wrong.”

Franks echoes Ribeiro-Addy’s concerns about the gender gap in awareness and understanding of PCOS in particular: “I think the fact that it’s a disorder in women of reproductive age means that it’s probably not taken quite as seriously as it should be.”

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A lack of awareness of these conditions, and dismissal of women who seek care, has more than just repercussions for physical health, however. Franks says these conditions can have serious mental health implications, and that the cosmetic symptoms of PCOS can be “soul destroying”. “We know that there is much more anxiety, depression and quality of life issues in women with polycystic ovary syndrome than in the general population,” he adds.

The physical symptoms of PCOS, such as excess facial hair, had a significant impact on Husain during her teens. “I tried electrolysis, bleaching, face wax, threading, you name it I tried it and nothing worked. If I waxed my face you’d probably see hairs coming out within two to three days and I’d have a full beard within seven to ten days,” she recalls.

Over years, Husain paid for excess body hair removal. “I had to expense it myself, it was just seen as part of me. ‘There’s nothing that can be done’ is what I was told,” she says.

Government action is not the only way to improve the circumstances for women with PCOS and endometriosis. Improved workplace policies to make allowances for those with severe symptoms, and support networks for those who struggle with the conditions, are also important. “I’ve seen some great things with smaller companies doing menstrual leave, but then I think, actually, if we just had better sickness policies, we wouldn’t need to break it down that much,” says Flynn.

Both Haigh and Ribeiro-Addy urge people who suffer with these conditions to speak to others using online forums or even groups that meet up in person to discuss the conditions, to break the stigma and seek crucial advice from women in similar situations. “Don’t stop advocating for yourself,” says Ribeiro-Addy. “We as women spend a lot of time caring for other people and in order to get your treatment. You need to be willing to fight for yourself.”

This article is part of a series on the gender health gap. Click here for more in the series.

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