Illustration: Smisson Hughes

WOMBS ETC

The agony – and ongoing mystery – of pelvic pain

Millions of women experience chronic pain in their vulvas – but it’s often hushed up or overlooked. Rachael Revesz is a sufferer in search of a cure

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By Rachael Revesz on

I’m about to celebrate our 11th anniversary. It’s the longest and most unrewarding relationship I’ve ever had – but I’m determined to get out the lube, Ibuprofen and perhaps a bit of chocolate cake. Let’s get the party started. I’m referring to my relationship with Doris, the name I gave my chronic pelvic pain.

When the pain is bad, it feels like a sharp stabbing in my vulva when I move. The solution is usually not to move, for most of the day, and call on my boyfriend to bring me things. On not so bad days, it’s a tearing or ripping across my pubic hair, or a dull ache. My whole pelvic area becomes super sensitive: forget tight jeans or even underwear when my vulva feels like a hot tennis ball that is about to explode. A fun new development is a tingling or pain down my legs, which can stop me from sleeping. The symptoms disappear, or can linger on, for weeks or months at a time. There appears to be no rhyme nor reason to why it happens or how long it lasts, so I can’t help but get irritated when kind people ask, “Are you feeling better now?”

After I wrote about Doris last year, men and women from all over the world emailed me to say they had similar symptoms and to keep up the good fight.

Receiving those emails was nice, but strange. I had seen six doctors and three physiotherapists over the best part of a decade, hobbling around like John Wayne and being given a range of bizarre and potentially dangerous diagnoses, from lack of hygiene to pudendal nerve damage. I had ruled out STIs, infections and cervical cancer. I thought I was the only one going through this. But after I first spoke publicly about my pubic bone, I realised I was not a medical marvel.

The term vulvodynia has been around since the 1800s, and one in six women suffer from chronic pelvic pain, as do 8% of men. One man called Richard*, 33, emailed me saying he has had pelvic pain for 15 years. “It’s impacted my life in countless ways, big and small. I’ve been to at least a dozen doctors, who have given me similar diagnoses to yours, and with little empathy. Every time I’ve tried to write about it, it just comes off like I’m complaining. I’m a guy, so it’s that much harder to talk about it.”

The term “pelvic pain” covers a lot of things and a lot of people, including vulvodynia and vaginismus, pelvic girdle pain, endometriosis and even bladder- and bowel-related conditions, like interstitial cystitis and IBS.

“As the doctors’ understanding and the research expands, it can then change the terminology used and the treatment options offered,” explains Kay Thomas, a trustee of the Vulval Pain Society.

When I started looking up my symptoms a decade ago, Google was a desert when it came to pelvic pain. There were only online forums, where people had either hit rock bottom and were dragging you down with them or they were touting the miracle cure and selling it for the bargain price of £500. And, even though awareness of pelvic pain has increased, the cause is still unknown. According to The Wonder Down Under: A User’s Guide To The Vagina, there was one study in 2011 showing a relationship between repeated yeast infections and vulvodynia. It was carried out on mice.

It is hardly surprising we are still playing catch up. We are living in a dark age when it comes to our vagina, one where Gwyneth Paltrow is still allowed to advocate for vaginal steam baths and we care more about vajazzling and waxing than going for a smear test. Sex education at school was basic, at best, and we have only just started talking properly about periods and how that “intimate wash” product does more harm than good. We fear the unknown, and fear can become pain.

I am often told that one potential solution is pregnancy. Personally, I could do without this news. I’m unsure if I even want children, and am convinced my pelvis simply couldn’t handle the strain

Jilly Bond, a pelvic-pain specialist and physiotherapist, insists things are improving, and there will soon be a public register of over 800 pelvic-pain specialists across the UK.

“I wouldn’t say we fully ‘understand’ chronic pelvic pain, as nothing in medicine is truly understood, but we are always making forward strides,” she says.

Bond compares chronic pelvic pain to phantom limb pain – it’s a pain that technically doesn’t exist, except it bloody well does. So, what can we do? Our bodies have to unlearn a language that has been hardwired into us for years: in scientist speak, we have to reroute our neural pathways, and one way to do that is by telling ourselves that we are not at risk, breathe deeply and try to relax our pelvic floor. (For years, women in pain were told they have a weak pelvic floor, and needed to tighten it up.)

“Get into a position that feels good – for some that might be a deep squat, the happy baby or child’s pose,” says Bond. “Or do something that gives you joy; listen to some nice music, watch a film or go for a gentle walk if you can. Meditation and mindfulness are also proven to bring the mind to a different state. It’s about finding the one thing that works for you and everyone is different.”

I am often told that one potential solution is pregnancy. Personally, I could do without this news. I’m unsure if I even want children, and am convinced my pelvis simply couldn’t handle the strain. Reassurances don’t reassure me. There are no guarantees in life, even from physiotherapists.

Nonetheless, pregnancy does work for some women. Jane, 36, an editor who has interstitial cystitis, told me she was “peeing razor blades” until she became pregnant with her first child.

“Pregnancy tends to resolve a lot of issues,” adds Bond. “It changes the blood supply, the hormones, and actually delivering a baby tends to sort things out.”

But it doesn’t work for everyone. Sarah, 31, who works in PR, started getting pelvic-girdle pain – “a crushing pressure on her pubic bone” – after the birth of her first child in the summer of 2016. Her second child is due in March.

“I’m frightened to give birth again because the pain came on so quickly after the last time. Deciding to continue with this pregnancy has been one of the biggest mental challenges of my entire life,” she says. “I have to be confident to say to my friends, family and my boyfriend, who already works really hard, that I need more help. That’s difficult as I’m quite independent.”

As Sarah explains, pelvic pain is an invisible disability – “Sometimes, I wonder if I’m just making it all up” – and many of us have children, partners and full-time jobs, so we just have to crack on. But even that – just functioning – can be tricky when even the most basic things, like exercise, going to the toilet and having sex, are painful, as is the case with several women I spoke to.

Self-care becomes a priority. Lucy Pasha-Robinson, a 29-year-old journalist, was diagnosed with chronic pelvic pain and endometriosis five years ago, after being rushed into A&E with crippling pain.

“Fatigue is a big thing for me, and it affects my mental health,” she says. “I have to take much better care of myself than the average Joe otherwise it will lead to another pain cycle. It’s about learning to live with the new normal, rather than finding treatment.”

Using my fingers, I gently touched my pelvic area, feeling the pain ebb and flow until it wore off. I fell asleep, my hands resting on my pubic bone, thinking that touch really did have the power to heal

I would describe Lucy and Sarah as positive realists. But there are days, they said, when they feel down, or it’s difficult to manage the pain. It’s on those days when you wonder if the physio is really working, if the doctors have got it all wrong or if that Groupon voucher for yoga was a waste of money – and, besides, you can’t go to a yoga class if you can’t even leave the house during a flare up. (My longest stretch of debilitating pain was three weeks, and I could barely go for a walk to the corner shop.) You can find yourself getting desperate, and wanting to believe that the cure is just around the corner.

Like with any chronic-pain condition, there are the hopeful whispers of miracles. Like the man who meditated his pelvic pain away or Tara Langdale-Schmidt, a woman in Florida who claims to have helped thousands of women reduce pain during intercourse by using vaginal dilators, inset with magnets, to expand the vaginal opening – something Tara discovered after successfully using magnets to heal nerve pain in her neck and back.

Grace Hazel, 29, works to coach and empower women and has an amazing Instagram; her story is like a club I want to join. She first felt pain in her vulva at 19, like me. She had surgery and drugs, but they didn’t help, so she ditched Western medicine and physiotherapy and instead turned to yoga, massage, Reiki and what she calls “de-armouring” your vagina. Think of it as a cross between massage, therapy and emotional release.

“It’s a lot of emotional work, doing de-armouring. You need to seduce yourself, in a way that makes you feel safe, not to turn yourself on,” she says.

Grace has an instrument called a wand – it’s curved and ridged and shaped a bit like a dildo – which is used to push against, and stretch out, the pelvic floor. The pelvic muscle is tough: you can often push until your fingers are sore. Her wand is made of rose-quartz crystal, and before penetration she advises massaging your breasts and labia with coconut oil. I told Grace that my wand is made of glass, and I usually just lube it up and put it in, without warming it up in my hands or any of the foreplay, so to speak. She looked surprised.

“I feel like our body needs time to be opened up,” she says. “It’s like going to the doctor and them whacking a speculum in. That’s not a good practice for allowing your body to feel safe and open. Your body will communicate when it’s ready to have something inside of it.”

It makes sense, in the same way that sex can hurt if you’re not relaxed or turned on. And, just like sex, pain is linked to both the physical and emotional. As Bessel Van Der Kolk wrote in his book, The Body Keeps The Score: Brain, Mind, And Body In The Healing Of Trauma, our bodies can literally store trauma, shame and fear, and the body and mind work together to remember it, even when we don’t want to.

Grace said that once, when having sex with a partner, she "got really angry". She held a pillow to her face and yelled into it. Once the emotion had come and gone, she said she felt a shift and the sex got good. I told her this man sounded like a keeper.

It might sound a bit hippy dippy, but it also rings true. My well of emotion is always bubbling just under the skin, and I have surprised various health professionals with explosive tears. But perhaps if I cried more, talked more and spent less time trying to cover up the pain and making excuses to well-meaning friends and colleagues, I would be further along the track to recovery.

The night after meeting Grace, I woke up around 1am and I felt an unusually strong pressure on my pubic bone. My loose cotton pants were uncomfortable, so I took them off. Using my fingers, I gently touched my pelvic area, feeling the pain ebb and flow until it wore off. I fell asleep, my hands resting on my pubic bone, thinking that touch really did have the power to heal.

I asked Thomas what she thought. “You can’t pooh-pooh anyone’s personal experience and if something works for them, I say ‘good luck’,” she says. “I’ve heard a lot of cure stories. I take everything with a pinch of salt, but I also kind of believe it.”

I’m willing to give most things a go. But for the most part, I don’t want to be defined by my pain. I just want to get on with my life. As Lara Parker, a senior BuzzFeed editor, writes in a brilliant essay about her pain: “I cannot keep existing in this in between – this place where I’m convinced that there is a cure out there somewhere, but I’m just not working hard enough to get there.”

She’s right – it is exhausting, and self-flagellation won’t heal us, either. Many of the women I interviewed are A-star students in the study of pelvic pain: we’re learning the science, listening to podcasts, doing physio, using wands and giving ourselves little electric shocks with TENS machines, and yet The Cure has so far evaded us. It feels like there are people on a higher plane, who have really put the effort in. Even chronic pain has its hierarchy.

Several women I spoke to, including the physiotherapist and those women who managed to reduce their pain, are determined that a cure is possible. I want to believe them, and I still do. Perhaps, as Kay Thomas says, any way that works for you is good enough (including lube and chocolate cake). I want to keep learning. The more we talk openly about our bodies, our sex and our pain, and understand how they are all linked, the closer we one-in-six will get to finding the same answer.

*Some names have been changed

@RachaelRevesz

Illustration: Smisson Hughes
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