What It's Like To Have Vulvodynia – The Common Condition Silently Wrecking Women's Lives

"I couldn’t even sit because of the severity of the pain."

Rosie, 21, from Leeds, was in her late teens when she realised her vulva was growing increasingly tender. At the time, she had no idea that she was experiencing vulvodynia – a condition characterised by a persistent, unexplained pain of the external female genital organs.

“I found sex really painful and couldn’t understand how people were actively seeking it out,” Rosie tells HuffPost UK, adding that her symptoms got progressively worse before her recent diagnosis and treatment. “I just felt uncomfortable and super tender which had a massive effect on my mental health too. The way I explain it is you shouldn’t really be able to notice any part of your body when you’re not thinking about it, but I couldn’t not notice how uncomfortable I always felt.”

Vulvodynia is not a rare condition; it’s estimated to impact between one in 12 and one in six women, depending on the report you read. That’s the equivalent of at least 2.5 million women in the UK.

So, why is nobody talking about it?

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While researching her book Vagina: A Re-Education, journalist and author Lynn Enright discovered a culture of silence and taboo surrounding vulvodynia. “It exists surrounded by whispers, doubts, misgivings,” she tells HuffPost UK. “We’re really bad at talking about vulvas – and so we are also pretty poor at talking about vulvodynia.”

The exact cause of vulvodynia is unknown, but it’s thought to result from a problem with the nerves in and around the vulva. Enright believes medical uncertainty about the condition is fuelling stigma.

“Too often, women who go to the doctor with the symptoms of vulvodynia are fobbed off and dismissed,” she says. “Doctors need to be much more educated about it – and there needs to be a lot more research into this condition.”

Rosie was tested for a number of STIs when she detailed her symptoms to a nurse. Despite them coming back clear, she was given antiviral medication, which she says did nothing. It wasn’t until she was referred to a doctor who had recently attended a conference about vulvodynia that she received a diagnosis.

Dr Vanessa Mackay, a consultant in obstetrics and gynaecology and spokesperson for the Royal College of Obstetricians and Gynaecologists, says vulvodynia can be difficult to diagnose because vulval pain can have a number of causes. These include persistent vaginal thrush, skin irritation from products such as soap, or a reduction in oestrogen causing dryness of the vulva.

“The discomfort can come and go without warning and last from weeks to months. Often the pain goes away as quickly as it begins,” she adds.

However, research suggests that for many women vulvodynia can have “a substantial negative impact on quality of life”. One study led by Saint Louis University, Missouri, found 42% of sufferers said they feel out of control of their lives, while 60% experience feeling out of control of their bodies. Additionally, 90% of cases reported dyspareunia (painful intercourse) – and 41% indicated that their condition had severely impacted their sexual life.

Charlotte*, a 43-year-old nurse from Norfolk, says her life has changed completely since she began experiencing symptoms of vulvodynia a year ago.

“I would say it has not got any better and remains a burning and stabbing pain that waxes and wains between a five-10 on the pain scale, depending on what I have done that day,” she says. “It appears to get worse after any activity, walking, bathing or sexual activity. The nerves are almost on fire after this and obviously it has had a huge negative impact on my life.”

Charlotte has gained weight since her symptoms began because she’s in too much pain to exercise and says the condition has forced her to change jobs; she used to work as a community nurse, but found the role too physically demanding and now works part-time as a practice nurse.

“Luckily my children are late teens and don’t require me to be as active, but I really feel for those who do have young children as I can’t imagine how they cope,” she adds.

The condition has also affected everyday life for Rosie. Although she has a supportive girlfriend now, her ex struggled to understand the condition, she says, which impacted their relationship. “My previous partner would take my pain personally and get frustrated and angry which obviously resulted in me lacking confidence and having a lot of anxiety around sex,” she says.

During her worst flare up (which her doctor believes may have been triggered by a UTI), Rosie describes her vulvodynia as “the worst pain I’ve ever been in in my life”. She could barely do anything, she says. “On top of my infection-like symptoms I couldn’t even sit because of the severity of the pain which was literally giving me hot sweats and the shakes.”

Charlotte is now seeing a consultant gynaecologist but is yet to find a treatment to ease her symptoms. Meanwhile, Rosie has found amitryptaline – an antidepressant drug that also works as a painkiller – has made life a little easier. “I’m now more equipped with knowledge and understand more what triggers it and so have to be really aware of things like not using shower gels and trying to always wear Bridget Jones-esque cotton knickers,” she says.

Treatment options for vulvodynia range from lifestyle changes such as these to gels and lubricants, medication, physiotherapy, therapy and in severe cases, surgery, explains Dr Mackay. She urges any woman who may be experiencing symptoms not to suffer in silence but to speak to a medical professional.

“Living with a long-term, painful condition such as vulvodynia can be frustrating and stressful,” she says. “Simply receiving a diagnosis can help ease symptoms for women who have struggled for years with failed tests and treatments and feel like they cannot be helped.”

For more support and information, visit the Vulval Pain Society’s website.
*Charlotte is a pseudonym provided for interviewee anonymity.