‘It destroys lives’: why the razor-blade pain of vaginismus is so misunderstood | Health & wellbeing

August 31, 2020

I was just a few weeks into a new relationship when the pain started. Whenever my boyfriend and I started to have penetrative sex, it felt as if there were razor blades inside me. At first I laughed it off, but soon I became terrified of intercourse. My body would freeze with fear as my clothes came off. By the time we said: “I love you,” even kissing made me feel anxious. I would spend entire day trips and holidays with him worrying about the pain.

When I first went to my GP, the advice I got was to “try and relax”. It was about as helpful as telling someone having a panic attack to “just chill out”. Without a real solution, I started to question whether I was imagining the pain. Or if maybe, somehow, I was to blame for it. My boyfriend was kind and supportive but I felt I was letting him down. Some days, I would feel so ashamed that it was hard to think about anything else. Other days, I’d feel an overwhelming sense of loss for the carefree woman I had been.

What I was experiencing was vaginismus, a psychosexual condition involving involuntary contraction of the pelvic floor muscles. There are two types of vaginismus. Primary, which women can have before they’ve ever had sex, and without a cause. And secondary, which happens when you have experienced trauma or pain, which can be a consequence of childbirth or repeated thrush infections, and which your body learns to anticipate. Both types can lead to a sensation of the vagina being blocked and pain like being scraped with broken glass or stabbed with needles.

It is unclear how many women suffer from the condition, but studies show that almost one in 10 women aged between 16 and 74 experience pain during sex, so the number could be substantial.

The advice I received from my doctor is not an anomaly. Dr Leila Frodsham, lead consultant in psychosexual medicine at Guy’s and St Thomas NHS trust in London, and a spokeswoman for the Royal College of Obstetricians and Gynaecologists, says that she regularly sees women who have received unhelpful and detrimental advice from doctors. “Advice like ‘just relax’ is well meaning,” she says. “But [for vaginismus sufferers] it’s like saying ‘just relax and put your hand on that hot plate’. No one is going to be able to do that.”

Laura, 35, visited her doctor with vaginismus symptoms in her 20s. “She stopped making eye contact with me,” she says. “And told me to go home, get drunk and calm down. When else would a doctor recommend you get drunk?” Laura isn’t alone. Jo, 27, tells me that her GP told her to “have a glass of wine” when she went for advice. “She meant it as a compassionate thing, but it doesn’t exactly promote the idea that you’re in control,” she says. Lisa Mackenzie, who runs support group the Vaginismus Network, says that it’s relatively common for doctors to advise women to drink alcohol to deal with vaginismus symptoms. “It makes me angry,” she says. “Going to the doctors to discuss something like this, you shouldn’t also have to worry about a lack of knowledge or compassion. When women are told to just ‘go and get a glass of wine’, it can stop their progress.”

Sarah, 23, started having symptoms when she was 11, and found that she couldn’t insert a tampon, but didn’t go to the doctor about it until she was at university. “I saw one GP,” she says. “And she said it was physical and that I needed surgery. Then I saw a sexual-health specialist and she said: ‘Just chill out’ and ‘Put some lube on a tampon and relax’. She didn’t even say the word vaginismus. I only found out that’s what I had when I saw my medical records on the NHS app.”

Sarah is lucky that she didn’t go through with the surgery. Frodsham says that she sees a lot of vaginismus sufferers struggling with negative consequences after having a procedure known as a Fenton’s, an operation that is usually used to remove scar tissue or an area of constriction around the entrance to the vagina to make it bigger.

“In surgery, doctors see an increase in size because the patient is relaxed under general anaesthetic,” says Frodsham. The problem is that this doesn’t deal with the psychological mechanisms that cause vaginismus. “Despite the fact that you’ve cut through some of the muscles, the rest are enough to contract the pelvic floor so that penetration isn’t possible.”

Surgery can even make the condition worse for vaginismus sufferers, says Frodsham. “Cutting through nerve endings can cause more pain or reduced sensation. Scar tissue from the surgery can make the vaginal orifice smaller and we can’t cut the pelvic floor without potentially rendering someone [liable to] incontinence and prolapse.”

There are cases of women paying for Botox injections to relax their muscles – which Frodsham warns against. “If you have an underlying issue, you’re not curing it,” she says.

Research Frodsham audited recently found that only 13% of trainee gynaecologists felt that they had had adequate training in psychosexual problems, despite a fifth of referrals to gynaecology clinics being for sexual problems. “I can’t think of another area where we don’t train people for something that common,” Frodsham says. “It leaves doctors anxious when they see a person with a sexual problem. No healthcare professional ever sets out to upset patients. They can sound dismissive because they don’t know how to manage it.”

Kate Moyle, a psychotherapist and spokeswoman for College of Sexual and Relationship Therapists (COSRT) says that some GPs don’t even know what vaginismus is. “Lots of patients describe having the word Googled in front of them [by their GP],” she says.

The lack of information about such conditions is common for other psychosexual problems affecting women, says Moyle. “I think the problem is that it’s psychosomatic – it doesn’t fit the medical model of a dysfunction, where it would be pain for a reason such as a cyst or hormonal imbalance,” she says. “But that mind-body connection is proven by neuroscience.”

Along with shortfalls in medical knowledge about vaginismus, cuts in services to tackle sexual dysfunction mean the condition falls in the centre of a healthcare grey zone. For vaginismus sufferers, this can be devastating.

Grace, 26, couldn’t use a tampon ‘without searing pain’. Illustration: Guardian Design/Ellen Wishart

A bad experience with her GP at 18 meant Grace, now 26, didn’t talk to another doctor about the pain she was experiencing during sex for five years. Despite being two years into a relationship, she says the doctor told her: “You need to wait for the right person to come along,” dismissing her as “not ready” for sex. She says: “I explained to her that wasn’t the case. I couldn’t even put a tampon in without searing pain. Her advice was: ‘Some women can’t use them.’”

The result was years of anxiety: “I didn’t feel like I could lie down on the sofa and watch a film with my partner. Even though he didn’t put pressure on me, I was terrified about what should be expected to happen.”

By the time Grace worked up the courage to see a specialist about the condition, she was about to get married. The consultant examined her and gave her advice such as: “If my finger can fit in there it means that anything can,” and: “Masturbate your partner and at the very finish let him go inside you, then you won’t have to last as long”. He prescribed her diazepam which she describes as just “knocking her out” before sex.

“The female nurses were saying: ‘Don’t worry, we’ll get you sorted out before the wedding,’ and the consultant was saying: ‘Your boyfriend will be chasing you around the house.’ It was horrific pressure with no psychological intervention and it was very male-centred. It made me feel worse about it.”

The process played a big part in Grace and her fiance ultimately breaking up. “Taking all these muscle relaxants and having the doctor prod around so much made me not want to have sex even more,” she says. “Anything intimate with my partner just felt so horrific. And because it was always me going to appointments on my own it was really difficult [for my partner to understand]. It drove a massive wedge in our relationship.”

Frodsham believes that an updated gynaecology curriculum, launched in June 2019 and focusing on holistic treatment and “how the mind affects the body”, will go some way to improve the advice women with vaginismus get from doctors. Frodsham is also working with the Royal College of General Practitioners to run a pilot psychosexual training scheme for GPs in south London this year.

“We need to make psychosexual training mandatory,” says Frodsham. “Every single doctor, nurse and physio who does intimate examinations should be able to manage: ‘I’ve got a problem with sex.’” Moyle is optimistic that such a change in approach is starting to happen. “We’re hearing about doctors who are more clued up on it,” she says. “I think women are realising they can access help for it. We’re getting there.”

In the meantime, sufferers are finding their own solutions to the problem – with good and bad consequences. Jo found following advice from support groups such as the Vaginismus Network – which include tips on how to use training dilators (a set of dildos that increase in size) and breathing exercises – improved her symptoms. Both Grace and Sarah found £50-per-hour psychosexual counselling helpful. Others find pelvic physiotherapy, pilates and massaging around the vulval opening and the back of the vagina where muscles are cramping useful. Laura says she has stopped watching shows such as Love Island and Geordie Shore because they were putting out “negative messages that sex is easy and casual”.

“The main thing I do [with patients] is say: ‘Let’s completely forget any attempts at penetration,’” says Frodsham, adding that there are specialist NHS services, they’re just often quite hidden. She recommends that women approach COSRT and the Institute of Psychosexual Medicine directly to find out what might be available to them.

For me, taking the pressure off penetrative sex really helped. My boyfriend and I broke up, but being single for a while gave me time to get better at my own pace, trying a combination of dilators, getting support from a counsellor and massage. I discovered that with the right psychological and physical help, my vaginismus was easily controlled. Now, I feel like a different person.

This is something Frodsham recognises when I explain this to her. “Vaginismus destroys lives. It doesn’t just destroy relationships, it affects women’s confidence as a whole,” she says. “I often see women who – once they’re better – go for job promotions because they feel more empowered to be themselves. They give me some of the greatest job satisfaction.”

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