"A searing pain in my vulva..." Liv had a common condition most women have never heard of.

One in five Australians experience chronic pain and it is estimated to cost the Australian economy billions every year. Yet, there has been a lack of research into chronic pain conditions, particularly those that affect women. I have recently been diagnosed with a chronic pain condition that is all too common but not talked about enough.

It all began one night when I woke up with a searing pain in my vulva. I went to the bathroom and tried to pee but all I experienced was pain. Thinking I had a yet another UTI I went to the sexual health clinic to get tested. But alas my results were negative and the pain was no longer there, so I forgot about it.

Then a number of weeks later I was walking to the grocery store and out of the blue came the searing pain only this time it was excruciating. I couldn’t even walk properly because each time my legs brushed together I experienced what felt like acid burning through my skin. I was in tears as I made a dash (or rather waddle) to the pharmacy begging for pain relief.

Over the next couple of months I ignored the pain when it was only a mild discomfort and when it was more severe I tried to manage it with Ibuprofen and harem pants. After many an evening spent Googling my symptoms I concluded that I was likely experiencing vulvodynia, which is a chronic pain condition that causes pain or ongoing discomfort in the vulva.

This can include the labia, clitoris, and vaginal opening. The pain is often described as a burning pain and can last for months or even years.

For me, the pain is akin to having a lit match permanently inside your vagina or having acid poured over your vulva. More Googling revealed that there are two different types of vulvodynia: provoked and unprovoked. The provoked kind occurs when pain is triggered due to something touching it like sitting in a tight skirt, using a tampon or sexual touch.

Unprovoked occurs seemingly without a trigger.

Chronic Pain explained. Post continues after video. 

Now, say what you want about self-diagnosing, in this particular instance it helped me to argue my needs when I went to a doctor for a referral. He was skeptical when I asked to see a gynaecologist and challenged me on it. He thought that a woman with vulva pain, requesting a referral to a gynaecologist was simply not justified.

Unfortunately this response is all too common in the medical industry, particularly amongst GPs. Women with conditions like vulvodynia are often told to relax more and that what they are experiencing isn’t real.

Their very real and distressing pain is brushed off as nothing more than hysteria despite the fact that we are now in 2018. The absurd thing about the nonchalance amongst the medical world is that vulvodynia is estimated to affect up to 20 per cent of the female population. It is nothing short of a widespread health issue but you don’t see people growing their pubic hair out of solidarity.

According to Jennifer Langford, a Melbourne-based physiotherapist, who has treated vulvodynia for the past 10 years, the reason behind a lack of knowledge in this area is because the medical industry have isolated pelvic pain conditions rather than treating them as broader chronic pain conditions.

Furthermore, the taboos that surround conversations about the female body can lead to shame or embarrassment for some women. Jennifer says, “for those reasons we’ve looked at it in a very limited way and there’s been a lack of research into these areas but really pleasingly that’s changing.”

I myself am no stranger to pelvic pain as I have experienced vaginismus— a chronic pain condition that occurs upon penetration of the vagina—for almost 10 years now and have been quite public about it. Not surprising is the fact that it can be quite common for other chronic pain conditions to co-exist with vulvodynia.

This can include: endometriosis and fibromyalgia which have both had their moments in the spotlight recently thanks to Lady Gaga and Lena Denham going public about their experiences with these conditions. Yet there is still a lack of conversation and misunderstanding about chronic pain particularly the conditions that are specific to women.

From my very new experience with the condition, I find it difficult to explain just how badly vulva pain can affect your life. From the outside it probably doesn’t sound as bad as it actually is. And indeed I have berated myself for not being able to just get on with it and ignore the pain.

There is a sense of guilt over the distress you feel because the pain isn’t life threatening. Especially when you know that there are people out there who do have serious life-threatening conditions. You bargain with yourself and try to reduce the condition down to a non-threatening sting. But when the pain is there, it pulls your focus and prevents you from functioning normally.

However, a key component to treating vulvodynia is actually the acknowledgement of the pain and its realness. Jennifer says that the role of the physiotherapist isn’t just to physically treat the pain but also to educate, “what we really do is give the woman an understanding of what vulvodynia is and this can be really significant and quite a turning point because quite often they are relived that their pain is real and that their distress is validated.”

Of course, vulvodynia is not just a physical condition as it is largely influenced by anxiety. To reiterate, that does not mean that this condition is imagined, rather it highlights the complex interplay between our emotions and our nervous system.

Jennifer describes the nervous system as an elaborate warning or protection system and when we experience ongoing pain, it becomes sensitised meaning that it can be triggered more easily. “So what happens is the system can be switched on with a trigger such as infection or injury but it can also be influenced with our emotions,” she says.

After going from painful daily symptoms of vulvodynia to sporadic and mild occurrences after only two physiotherapist appointments, I can see how the reduction in my anxiety levels has helped to ease my symptoms. That said, I have also been prescribed amitriptyline cream which is used to treat nerve pain.

I apply it to my vulva twice daily in the hopes that it will ‘turn down’ the sensitisation of the nerves around my vulva.

Of course, this medication does not work for everyone because the treatment of vulvodynia isn’t an exact science. It often requires a multi-disciplinary approach that is tailored specifically to an individual. On top of physiotherapy to relax the pelvic floor muscles treatment can also include; acupuncture, mindfulness training, surgery where the nerve fibres of the area are cut out, and even Botox injections.

Despite the fact that there has been such little understanding in regards to diagnosis and treatment of pelvic pain conditions in the past, research and support is improving. Jennifer’s advice to other women who think they may be experiencing the symptoms of vulvodynia or pelvic pain is to get help.

“Find a health professional or GP that has experience in women’s health—as in pelvic health— that’s a really important factor,” she says. “That’s usually easy to find or they can go to places such as a family planning clinic or a gynaecologist.”

Despite the painful and isolating nature of vulvodynia, I am grateful that it has taught me to appreciate life more. I am now able to find a sense of peace and gratitude when I am pain free. Whether or not my pain comes back again, I know that I am now more equipped to handle it than I was before.

If you are experiencing pelvic pain of any kind, know that it is not normal and it is not something that you have to tolerate. You can get help. For more information on this condition you can head to this website.