Vulvodynia: The Debilitating Condition Nobody Seems to Know How to Treat

I have the little-known gynaecological condition, and no one can help me.

05 July 2021, 8:15am

A version of this article originally appeared on VICE Belgium.

“I used to drive to uni with a frozen bottle between my legs,” writes one woman in a vulvodynia support group. “For those who can’t wear underwear or tampons – what do you do during your periods?” asks another.

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Vulvodynia is a little-known condition medically defined as chronic pain of the vulva without an apparent cause. It affects between 4 to 16 percent of people and is more common between the ages of 18 and 25.

In 2013, a study of women who have experienced vulvodynia symptoms at some point in their lives found that 48 percent of them had sought treatment for it, but only 1.4 percent were officially diagnosed. Only 16.9 percent of participants had gotten rid of the pain, and it took them 12-and-a-half years on average. 

“Vulvodynia is a diagnosis made after you’ve excluded everything,” said Dr Winston de Mello, a newly-retired consultant in pain medicine at the University of Manchester. He explained that patients take a while to get diagnosed because doctors often focus more on excluding treatable illnesses like inflammation, skin conditions or even cancer: “By the time they get to me, it is not uncommon for a patient to have seen 50 specialists.”

The causes of the illness are quite difficult to pinpoint. “It’s a complex interaction between the nerve system, the hormonal system and the genital-urinary system,” de Mello explained. Although the illness primarily manifests as nerve pain, patients are also more likely to also have other medical issues, including Irritable Bowel Syndrome, bladder pain, headaches, migraine, thyroid dysfunction, fibromyalgia, sleep disorders, chronic fatigue and multiple allergies. Vulvodynia also causes your pelvic floor to tense up as a reflex to chronic pain, which in turn makes the discomfort worse.

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“What we do in our clinic is we take a whiteboard and explain the patient’s story, showing the links between the different organs,” de Mello said. They then develop a multi-disciplinary treatment programme, taking into account the patients’ needs and what might exacerbate correlated health concerns. “You're not gonna cure them – there’s no cure – but there is a good chance of having a better quality of life,” de Mello said.

Having treated vulvodynia patients for over 30 years, de Mello is now using his retirement to get a diploma in psychosexual medicine and help patients with mental and sexual health problems. Depression, anxiety, pain during sex and vaginismus – an involuntary contraction of the vagina during intercourse – are also very common in people with vulvodynia. “We’ve got to reduce your level of stress, because stress makes you produce adrenaline and cortisol, and that amplifies pain,” he said.

One of the main causes of distress is that patients are often not believed by doctors, who sometimes have never even heard of the condition. De Mello, who was trained in the 1970s and 1980s, said there was little to no discussion of vulvodynia in the curriculum and that things haven’t improved much since then. “When I was practising as a junior doctor, my obstetrician and gynaecologist told me these women just had a sexual problem and needed to drink a glass of wine and just get on with it,” de Mello said.

Unfortunately, vulvodynia patients often find out about the condition on their own and have to shoulder the cost of private consultations and expensive treatments. We spoke to four women about their diagnosis and how the chronic illness impacts their lives.

‘I ended up paralysed and put my sex life on hold,’ Eva*, 27. France.

I started feeling weird fits of pain in September of 2018 – an itching and burning sensation. My first thought was I had a yeast infection, and when you describe those symptoms to a doctor they won’t look any further. So I started using ovules and vaginal creams, but nothing worked. I was in pain, but people kept telling me it was normal.

Six months later, my doctor plainly told me she didn’t know what was going on with me and she couldn’t help. I couldn't believe I was being abandoned like that without an answer. So I did my own research online, and the word “vulvodynia” kept coming up. I discovered a women's association [in France] where people discuss their unexplained gynaecological issues. They had a list of specialists for each specific problem. 

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In Paris, there were only three or four vulvodynia specialists, each with a five-month waiting list. After more than a year of uncertainty, the diagnosis was finally confirmed. It was a huge relief. 

The first step of the treatment was to apply numbing creams to the vulva. It helped for a while, but the effects eventually wore off. The second step was taking a mini dose of an antidepressant [Laroxyl] to calm the nerves around the vulva. Things were going pretty well at first – I rediscovered life without daily pain – then the effects waned. I increased the dosage until it got to the point that the drug would knock me out, so I stopped.

By the time I was diagnosed, my perineum was in bad shape. I started seeing a physiotherapist in parallel with the treatments and learned to relax my muscles. That helped a lot. Today, I live with my pain, but it’s nothing compared to the early days.

My vulvodynia didn’t just affect my vagina, it affected my sense of femininity. There are plenty of ways to feel like a woman, but having a problem with your genitals really changes things. I stopped liking my appearance, which led me to take less care of myself. 

Vulvodynia doesn’t necessarily cause pain during sex, but over-contracting your perineum can. Even though I never had issues before the onset of my symptoms, sex became painful and I had problems lubricating. Over time, I became more and more anxious about it. I was afraid I’d feel pain and that the other person would see it and be weirded out. 

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At the time, I was sleeping with different people and I wasn’t close enough to any of them to confide in them. I put my sex life on hold. Doctors say developing a sexual relationship with someone can facilitate healing. But by then, I was no longer able to tune into my desires.

I was deeply troubled by how hard it was to get a diagnosis for something so problematic. I’m sure if something so crippling was happening to men we would have found a solution in a heartbeat. On top of it all, I’m also saddened by how many people don’t have access to care. These conditions can be cured by exploring different medical avenues, combining gynaecology, sexology, physiotherapy and hypnotherapy, but you need to have the means.

‘It’s as if I was missing a layer of skin,’ Laura Petruzza, 22. Catanzaro, Italy.

I started feeling an itching sensation down there when I was 15 or 16. At first I was told I had vaginitis [vagina inflammations], so I would do vaginal douching with anti-fungal medication. I’d feel better for a month or two and then sensations would be back. At 18, I saw a gynaecologist because the itching had gotten worse, but she said nothing was wrong. Every month I’d experience a flareup and then nothing, in sync with my menstrual cycle, but my gynaecologist didn’t seem worried so I wasn’t either.

Then, during the lockdown in September of 2020, I started having so much pain I couldn’t get up from bed. It was as if I was missing a layer of skin. I had a candida and then a Gardnerella infection and took medication to cure them, but the pain got worse. During our last visit, my new gynaecologist said I might have something called vulvodynia – a word I’d never heard before – and prescribed me a basic treatment plan.

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After a bit of hesitation, I looked up the term online. A whole new world opened up to me. I met other girls who had the same problems and asked them where I could get an official diagnosis.

I went to a local urology specialist who performed the so-called cotton swab test, where a doctor presses with a cotton swab on the vestibule – the entrance of the vagina – in different points, going clockwise, asking whether you felt pain, a burning sensation or just the swab. I felt it burn in multiple spots, a typical sign of nerve pain. I also had involuntary spasms in the vulva and clitoris.

The doctor examined my pelvic floor externally and found it extremely contracted. That caused me pain in the bladder and lower belly. We started working on easing those muscles with local massages and breathing exercises. The last time we saw each other, in June, my pelvic floor was better and my spasms had disappeared, but the burning sensation remained.

I’d say my pain level is down 20 percent. I can’t wear tight clothes or sit for more than one or two hours. If I absolutely need to, I recline back a bit. The best position for me is lying on my back with my legs open, then I almost don’t feel any pain.

My life has changed radically. I had moments of deep depression. In November of 2020 I started seeing a therapist because I couldn’t handle this chronic pain anymore. The lockdown didn’t help – I was always at home, my mind solely occupied by thinking about my pain. I stopped studying and closed in on myself. It was hard, because my friends just couldn’t understand why I had all these medical problems due to some stupid vaginitis [Laura’s initial diagnosis]. Joining the Facebook groups brought me so much relief.

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I don’t know how the therapy will go. All the drugs I was prescribed are meant to alleviate symptoms, not cure them. With physiotherapy once a week, I will end up spending about €600 a month on the treatments. For now, I’m grinding my teeth, but I don’t know how much longer I’ll be able to pay.

‘I got to the point where I told myself: If I don’t get better within a year, I will ask for euthanasia,’ Valentina Simonetti, 29. Monza, Italy.

It all started in 2016 with a very aggressive and prolonged candida infection that either damaged or inflamed my nerves. My gynaecologists kept prescribing creams and antifungal drugs, but the burning sensation persisted. They told me to go to a psychiatrist because they said it was not possible for me to actually experience so much pain. Obviously, the psychiatrist couldn’t help me. She just gave me some antidepressants, but I didn’t take them because I knew my pain was real.

In 2017, I took matters into my own hands and researched online. This magic word – vulvodynia – kept popping up. But the only specialist in my area at the time was too expensive. My parents were totally helpless – they kept asking if I was sure it was that bad. My dad even wondered if I was using toilet paper wrong. All these things made me lose precious time. 

I finally saw a specialist in October of 2017. They told me I wasn’t crazy, I did have vulvodynia, and prescribed me Laroxyl and the other usual drugs, plus pelvic floor rehabilitation therapy.

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I had to change gynaecologist, and the new one told me she couldn’t cure me, just make it better. Back then, I only had a mild case. I was young, I wanted to pursue a career in cinema, and I thought – stupidly – to simply stop trying. It was all very expensive, my supplements alone cost over €100 a month. I thought I could wait until after film school. In hindsight, maybe I still had a chance to cure it.

In 2018, I met my current boyfriend and I started having sex more regularly. At the same time, my endometriosis – which I’ve had for years, but which hadn’t been officially diagnosed yet back then – got worse. All these factors accentuated my condition, and starting in April of 2019, I’ve been experiencing pain and burning 24/7. 

In August of 2019, while I was browsing an endometriosis group, I had a eureka moment – I figured, there was probably a group for vulvodynia support, too. Even now, when I think back on it, I still get emotional. It really helped me understand my condition.

In the group, I also found the name of the gynaecologist and the physiotherapist I still see today. This gynaecologist started treating my endometriosis and vulvodynia more in-depth. She looked into whether I had allergies, she performed acupuncture treatments to relax the pelvic floor, she fixed my nutritional values, since I had some vitamin deficiencies.

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I’ve been with her since the end of 2019, and I can say I got better. Before then, I’d got to the point where I told myself, “If I don’t get better within a year, I will raise all hell and ask for euthanasia.” [Euthanasia is illegal in Italy.]

I often hear people saying there are worse illnesses than vulvodynia. Sure, it’s just annoying when it’s at a low level, but when it takes over and you don’t know where to find treatment, it becomes a disability.

I used to work and study, but I could no longer sit down for eight hours to edit videos. I’d go to class and be embarrassed to say, “Sorry, I need to stand up,” because I didn’t know how to explain why. Now that I’ve been on TV [on an Italian show that ran a segment on vulvodynia in March of 2020] and talked about this in front of 60 million people, I’m no longer ashamed.

Today, I completely depend on my parents because I had to quit my job. I must have spent about €7,000 on treatment this year alone. People will tell you not to be negative, but in reality you need to be aware of both scenarios. There are women who are cured, even miraculously, while others will have this problem for the rest of their lives.

‘My dad kept saying I was insane,’ Tanya Crupi, 32, Sicily.

I’ve had many health issues since I was a kid, including chronic candida infections since age nine. Last year, in July, I got candida twice within a month. I got it out of my system, but the burning sensation inside my vagina persisted. It was as if I had an internal sunburn.

My current gynaecologist has been seeing me for ten years – he’s like a father to me. I stopped going to him because he said he didn’t know how to help me anymore and referred me to other specialists. Nobody knew what I had – they told me it was all in my mind. Someone even said maybe I had an unknown infection and that’s why it wouldn’t show up in the tests. In the meantime, my gynaecologist’s daughter, who is also a gynaecologist and obstetrician, had a similar case. She figured it was neuropathy and told my doctor to prescribe me the same treatment.

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Within four days, all my symptoms were gone. I was living in peace, I thought I’d been totally cured. Until, in February of 2021, I had the umpteenth candida and my symptoms came back in full swing. The antifungal medication got rid of it, but they also accentuated the pain.

I went to a neurologist, who confirmed the vulvodynia diagnosis. He added Lyrica to my treatment [an anti-epileptic and anti-anxiety medication] because I’ve also had fibromyalgia for three years. I got better again for a while, but last week I had a relapse after inserting a probiotics ovule. It’s been a week of constant pain. 

I’ve recently moved in with my boyfriend, but we haven’t had sex since April. I’m totally blocked. I’m not in pain during sex, but I do feel it after. I’m also afraid I’ll catch something and everything will get worse. These anxieties made me develop vaginismus, so I am super tense from the get-go and I tear easily. It’s awful, but I can’t get over it.

The worst part is you can’t talk to people because they won’t understand you. Last year, during the summer, I would cry all the time and break things because the burning sensations would torment me. My dad kept saying I was insane. People said all kinds of things.

I’ve felt all kinds of pains throughout my life – once I had a headache every day for seven months. But this is the worst pain I’ve ever felt. I feel sick and useless. I always wanted to have a family, but I don’t know if that will ever be possible. It’s really sad.

*Name changed to protect their privacy.

De Mello created a questionnaire patients can give their specialist during their first visit to speed up diagnosis. He also recommends following these guidelines for vulvar care as a basis for any treatment.

Tagged:

Sex, vagina, VICE International, endometriosis, vaginismus, vulvodynia, vulva, VICE Belgium

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