Millions of women turn to social media for help with endometriosis

Millions of women turn to social media for help with endometriosis

Women in pain with endometriosis are turning to social media to share their experiences. On TikTok, videos highlighting the condition have attracted more than 1.3 billion views and list symptoms including debilitating pain and struggles to conceive. Hundreds of the people writing in the comment sections below each video recognise the pain.

Endometriosis affects one in ten women in the UK — or 1.5 million — yet it takes an average of eight years for a diagnosis and there is no cure. Research is critically underfunded and many family doctors are still undereducated about the condition.

Endometriosis is a condition where tissue similar to the lining of the womb grows in places outside the womb, such as the ovaries, fallopian tubes and bowels. But it’smore than a disease about cells — it’s about symptoms, and the big one is pain, which can come in a variety of forms.

Thousands of sufferers discuss their negative experience of healthcare on r/endometriosis, an online forum on Reddit with more than 37,200 members. A Times analysis of the top 50 posts discussing endometriosis found that 74 per cent had had a poor experience. Those who expressed any positivity mostly focused on their relief after finally receiving a diagnosis or recovering from successful surgery.

It is clear that patients are all too aware of the issues and that problems around diagnosis are well understood. So has all this talk over the past decade led to change — and if not, why not?

“Thousands of people are on forums giving emotional support to people going through the same thing,” said Holly Smith, 37, a presenter on ITV’s This Morning, who spent four years trying to get a diagnosis.

“I wanted to raise awareness on TikTok because it’s such a young audience and people need to be more understanding of all ages.”

In one of her videos, which has been viewed more than 1.7 million times, Smith poses in front of a backdrop of a hospital, doubled up in severe pain. She then plays the role of a doctor, who offers her paracetamol.

“I had a nightmare about when I remembered a doctor saying, ‘Have you tried paracetamol?’, and I woke up in a sweat,” she said. She felt she had to do a skit for TikTok. “I’ve done a lot of stuff over the years on TikTok about endometriosis being an invisible illness which has done quite well, but within an hour of posting this video it was blowing up. People were saying in the comments that ‘It’s a waste of A&E time’, and I was responding: ‘It wasn’t a waste of time, my organs were failing’.”

While she was waiting for a diagnosis Smith’s endometriosis spread to her bowels. She now has to use Peristeen, an irrigation system, every time she needs to empty her bowels. “I was told it was in my head — I got to the point where I thought I was absolutely crazy,” she said. “For the rest of my life I have to use aids to go to the toilet because they didn’t get to it quick enough.”

Emma Cox, CEO of the charity Endometriosis UK, said social media had played a “significant role” in raising awareness of the condition. “So many have been so generous in sharing their own personal stories to help others and it’s a great way to get accessible information out,” she said.

Professor Andrew Horne, of the University of Edinburgh, started studying and specialising in endometriosis in about 2010 and has witnessed the growth of online communities talking about the condition. “When I started, endometriosis wasn’t being discussed on social media, it wasn’t on television, it wasn’t discussed at a political level,” he said. “There certainly weren’t specific funding calls for endometriosis, you really had to fight to get a research project. I’m not saying it’s still not difficult, and we’ve still got a long way to go, but there’s definitely been a change for the better, which is great.

“I think social media has had a huge impact because one of the problems has been a lack of awareness amongst the public as well as amongst doctors, so the more it’s talked about the better.”

He believes that one of the reasons why it hasn’t been talked about before is “because it’s a women’s condition which sometimes people don’t like talking about”, as well as the fact that it is “a pain condition which is often a hidden condition so people try as best they can to get on with their lives, so others aren’t aware they’re suffering”.

Awareness is increasing — in a poll this year 31 per cent of men and 75 per cent of women correctly identified endometriosis as a gynaecological condition when presented with a list of options, up from 25 per cent and 66 per cent last year. Cox, whose charity commissioned the poll, said that “taboos and embarrassment about talking about endometriosis and its symptoms have historically hampered awareness, and hampered those with the disease being understood, believed and accessing care.

“The menstrual cycle and periods, bowel problems, painful sex, potential infertility — all are potential symptoms of endometriosis but are seen by many as embarrassing, taboo and not to be talked about. But we should be able to talk about these as we would with any other medical condition. These multiple overlapping taboos have held back progressing endometriosis care, support and awareness.”

The causes of endometriosis are unknown. There are several theories — including links to genetics, the immune system and even toxins in the environment — but none that all experts can agree on. There is also no known cure. Women are offered pain management and hormonal contraception but these merely manage the symptoms rather than deal with the underlying cause. A surgical laparoscopy can be offered as a solution to remove lesions, but these often return.

Even though 95 per cent of women with endometriosis say the symptoms have a negative impact on their wellbeing, endometriosis is still not receiving as much funding as other conditions. The National Institute for Health and Care research, the largest funder of health research in the UK, has a budget of £1 billion. At present there are four active projects that have been granted funding. In comparison, there are more than 60 active projects focusing on diabetes, which affects 4.9 million men and women in the UK, and 22 focusing on breast cancer, for which about 55,000 women receive a diagnosis each year.

“We now know there are multiple different subtypes of breast cancer; we know which responds best to which treatment, we know the prognosis of the different subtypes, and that’s where I’d like to see us with endometriosis,” Horne said. “However, to have that understanding needs investment and money and for a long time women’s health hasn’t had much investment in terms of funding, and endometriosis in particular.

“Social media awareness has helped in terms of being able to go to funders and say, ‘Well actually, you should invest in this condition, look at all the people talking about it’.”

It’s not just the possibility of more funding that’s improving; Endometriosis UK has successfully campaigned to get menstrual wellbeing into the school curriculum. Horne and his team in Edinburgh have just finished the second part of a study looking at a non-hormonal drug that reduces lactate in the pelvis, something they think predisposes women to developing endometriosis. They are also fundraising for a large study to monitor a cohort of women with suspected endometriosis to identify new targets for treatment.

At present in England, the National Institute for Health and Care Excellence (Nice) guidelines on the condition only cover endometriosis within the pelvic cavity. According to Endometriosis UK, 12 per cent of those with the condition have it elsewhere. The only mention of non-drug options for pain management in the guidelines is a reference to the lack of evidence to support the use of Chinese herbal medicines.

Nice said their endometriosis guidelines include “recommendations on the use of medication for pain management, when hormonal treatment should be offered and when to refer women for further assessment”. It said guidance that women with endometriosis outside the pelvic cavity should be referred to a specialist endometriosis centre was added last year.

Professor Dame Lesley Regan, the women’s health ambassador, said: “Through the women’s health strategy we have set an ambition for all women and girls with severe endometriosis to experience better care with a reduced waiting time for diagnosis. Research plays a vital part in improving care, which is why the National Institute for Health and Care Research has invested over £11 million into endometriosis research since 2011.”

There have been several positive announcements. Last year Scotland’s women’s health plan committed to help reduce waiting times for diagnosing endometriosis from more than eight years to less than 12 months, through strengthening collaborative work between regional specialist centres, commissioning more research and providing more information to young people. In May the Women’s Health Wales Quality Statement included recommendations on improving care.

Australia has a national action plan on endometriosis that has committed $22.5 million to research since 2018 and France recently launched a national plan to invest in research, raise awareness and educate healthcare practitioners.

At present women in the UK are still waiting years for a diagnosis, being put on birth control as a temporary solution and having to explain their condition every time they bring up their chronic pain.

These women, in their hundreds of thousands, are crying out for help on social media. For them the speed of change is not happening fast enough.

Do you have a question about endometriosis? Whether about treatments or living with the condition or research, our panel of experts will be online to answer live this afternoon at 1pm. Post your question in the comments below.

The panelAndrew Horne, endometriosis expert and professor of gynaecology and reproductive sciences at the University of Edinburgh, Emma Cox, the CEO of Endometriosis UK, Oliver O’Donovan, consultant gynaecologist and endometriosis and fertility specialist and Carla Cresey, the founder and CEO of the Endometriosis Foundation

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