In 2018, The Week ran an essay that went viral. Its argument was that we live in a culture "that sees female pain as normal and male pleasure as a right". In it, about halfway down, was a throwaway statistic. This statistic said that on the research database PubMed there were a whopping 1,954 clinical trials studying erectile dysfunction, compared to just 393 exploring female sexual pain. Of those 393, a mere 10 were studying vaginismus.
Vaginismus is a psychosexual condition. It happens when subconscious fear causes the muscles in the pelvic floor to contract involuntarily and the vaginal orifice to temporarily shrink. Given that there are 200 times fewer trials exploring it than erectile dysfunction, you might think that it’s not that common or serious a condition. But it’s reported that around one in every 500 women and people with vaginas will experience vaginismus and that it can make penetration near impossible and incredibly painful. Sufferers describe the physical symptoms as feeling "like there’s a brick" or "shards of glass being pushed" inside them. It can also cause mental symptoms like feelings of shame, anxiety and fear.
Left untreated, the impact of vaginismus can be life-ruining but from the lab to the GP's office, many healthcare experts know nothing about it. Lack of research means that there isn’t even substantial knowledge to show that some of the most commonly prescribed treatments for vaginismus, like dilators, work. (This story plays out similarly for other female sexual pain conditions: women with the chronic vulval pain condition vulvodynia are still being prescribed a medicine which in 2018 was proven to be no more effective than a placebo.) It also means that it takes a long time for the condition to be recognised and treated properly by doctors.
I remember one doctor saying, 'Have you tried having a glass of wine?' and I didn't know what to say back to that.
"My biggest wish is that, on my very first trip to the doctor as a teenager, it was picked up," says Lara*, a 27-year-old from London who has spent the past decade dealing with vaginismus. After being told by her GP that there was "nothing physically wrong" with her, Lara did not seek treatment for years. Dealing with the vaginismus on her own for so long had a negative impact on a five-year relationship she started in her early 20s. "For us it was a big unspoken issue because I was so emotional about it, and it was so traumatic for me," she says. "Every three months it would rear its head and my boyfriend would get upset because he would try and start something [sexual] and I would say 'no'."
It is not surprising that experts have very little knowledge about vaginismus. Women’s sexual health problems are routinely under-explored by researchers, perhaps because of long-term gender imbalances within senior medical circles. Men still hold the majority of senior roles in the NHS as well as in social sciences and public health departments at leading universities in the United States, Britain and Canada. Women, meanwhile, are more likely to be rejected for research funding.
This lack of knowledge probably also comes down to prejudice around female pleasure and pain, as discussed in The Week essay. Numerous studies show that women’s accounts of chronic pain are more likely than men’s to be discounted as "emotional" or "psychogenic" and therefore "not real". Plus, women’s sexual pleasure is vastly under-researched: the full structure of the clitoris was only discovered in 2005, there has been very little worthwhile research into female orgasms and we had to wait until 2015 for research into the make-up of female ejaculate.
Royal College of Obstetricians and Gynaecologists spokesperson Dr Leila Frodsham says that with the exception of a few medical schools, doctors aren’t taught about female sexuality at all. "We might cover a little bit for men," she says. "And more now than we used to because viagra can help men with erection problems. But [female] sexuality is not touched upon." This means that it’s highly likely that both the GP and the gynaecologist a woman will be referred to about her vaginismus will not be trained to deal with it. One study which Dr Frodsham conducted with a colleague found that only 13% of trainee gynaecologists felt they had adequate training to deal with sexual problems.
"As doctors we go into medicine because we are fascinated by people and fascinated with disease," says Dr Frodsham. "And what we want to do is make people better. So to be faced with a problem where we don’t have the skills to help is terrifying. The gynaecologist [or GP] is frightened because we haven’t trained them and you end up in a situation where they can appear dismissive and the patient retreats back into their shell and doesn’t go back to the doctor again."
Research shows that one in five women who get referred to gynaecologists have overt psychosexual problems including vaginismus.
Dr Leila Frodsham
It’s why a new virtual training scheme, which Dr Frodsham told Refinery29 exclusively about, will have such a big impact on patients with the condition. At the beginning of 2020, Dr Frodsham was planning to run groundbreaking trial training for a group of GPs to teach them basic skills in managing patients with sexual difficulties. The aim was to create a system where women are immediately directed to specialist psychosexual services like hers, rather than going to gynaecologists who often can't help.
In March the training was put on hold because of the pandemic. But it’s actually been a blessing in disguise. "We’re now designing some virtual training to help GPs deal with both male and female sexual difficulties instead," says Dr Frodsham. It will run in 2021 and it’s exciting because the Institute of Psychosexual Medicine has found that the virtual training they’ve offered for professionals so far has been much better attended than its real-life counterpart. "We are training people at the other end of the country," explains Dr Frodsham, "who are logging in at the end of their work day and having their training immediately after work without having to travel anywhere. We’ve got higher turnout than ever. And the progress I am seeing with the doctors is phenomenal."
The course will hopefully be a big step towards putting an end to the additional stress experienced by vaginismus patients due to having a condition that's in many ways unknown. Dr Frodsham says it’s not uncommon for a vaginismus sufferer to see five doctors before being referred to a psychosexual therapy clinic where they can get the help they really need to recover. Plus, during the diagnosis process sufferers report receiving unhelpful and sexist advice like "you’re not ready for sex" or "just try to relax", which can make dealing with the condition even more traumatic.
Laura*, 26, says that when she went to the GP at "17 or 18" to ask about vaginismus symptoms, the doctor said: "Have you tried having a glass of wine?" She ended up seeing six doctors before finding an answer. "I was just really helpless," she says, "but also frustrated. I remember going for an ultrasound to check I didn’t have endometriosis and the woman doing it was saying, 'It’s a bloody joke – they know so much about impotence and about premature ejaculation and anything that could make a guy feel emasculated but they know shit all about vaginas, vulvas and that whole system'."
Not only will increased knowledge about vaginismus help women like Laura avoid having to navigate advice like "just drink wine", it will also save both patients and taxpayers money. Dr Frodsham says that a lot of vaginismus patients who go to gynaecologists are given unnecessary laparoscopies, which she says "anatomically makes absolutely no sense". (A laparascopy costs around £2,000 privately.) She adds that many women with vaginismus often end up opting for IVF so that they can get pregnant because they’ve been unable to find the right help to allow them to have penetrative sex with their partner. Each round of IVF costs the taxpayer £45,000. "I am in comparison incredibly cheap to see," she says. "I can speak to women with a lifelong condition and resolve it entirely for £600."
We have wiped out huge numbers of psychosexual services [through cuts to sexual health services]. That has meant that the clinics that do exist are massively oversubscribed. Even if a woman has been lucky enough to somehow discover that we exist, they have to wait a year to see us.
Dr Leila Frodsham
Meanwhile patients who receive bad advice or no diagnosis often go looking for their own solutions – with expensive consequences. Recently, these have included a treatment where Botox is injected into the pelvic floor muscles to relax them. Dr Frodsham calls out this treatment as not dealing with the underlying mental health problems which cause the physical tightening symptoms of vaginismus. It’s not widely researched, either.
Rosie, 24, says that after years of having no luck finding solutions on the NHS, she opted for Botox. "I felt like I was taking stabs in the dark of things that might help or work," she says, explaining that she has spent £3,500 over the past four years on hypnotherapy (which didn’t work) and injections to relax the pelvic floor muscles. "The Botox is a double-edged sword," she says. "It helped with the physical symptoms but it didn’t get rid of the anxiety and the fear. It made me realise I needed talking therapy too." While Rosie got her injections at a private health clinic, I’ve heard stories of women going to beauty salons to get the treatment, risking much worse consequences. One woman told me that they "found a guy who’d done it once before" online.
Laura didn’t opt for Botox but says that she got "scammed" into spending £70 on a "miracle" product which she found online. "Supposedly, if you put it in your vagina every night for three weeks and take it out, it will have cured your vaginismus," she says. "But I think that people realised that there was a gap in the market to exploit because it’s a load of crap." She and Lara have both spent hundreds of pounds on sex therapy, too. This is actually available on the NHS, along with things like pelvis massage, but vaginismus sufferers have to really push to get it.
"I have women who have come to see me and have said, 'I had absolutely no idea there was any [psychosexual] service in the UK, I was planning to go to the States to get it,'" says Dr Frodsham. However she warns that the availability of psychosexual healthcare on the NHS has deteriorated massively, thanks to cuts to the UK's sexual health services. In a survey of members of the British Association for Sexual Health and HIV (BASHH) in 2018, 42% of sexual health providers reported a reduction in psychosexual healthcare. "We have wiped out huge numbers of psychosexual services," says Dr Frodsham. "That has therefore meant that the clinics that do exist are massively oversubscribed. Even if a woman has been lucky enough to somehow discover that we exist, they have to wait a year to see us."
Rosie says that the process of getting treatment shocked her. "If any of the men I know went to the doctor," she says, "and had a penis problem, I think it might be taken more seriously or there might be more investigation as opposed to being sent away with no information, like I was. I actively had to go online and do all the research myself." She’s right: the lack of knowledge about vaginismus is shocking. But the blame doesn’t lie with frontline healthcare professionals. (Even before the pandemic, GPs were under massive pressure, one third of gynaecologists were suffering from burnout and cuts to sexual health services were causing staff to want to quit. It’s hardly surprising that there’s a massive problem.) It lies with the people funding research and training in psychosexual conditions.
Hopefully Dr Frodsham's new virtual training programme will jump-start the process of turning that around. Vaginismus sufferers deserve solutions which are easy to access, well researched and provided by doctors who know their stuff, rather than a system that leaves them lonelier, more embarrassed and ashamed. If all goes well then, hopefully, that future is on its way.
*Names have been changed