My Journey with Vulvodynia

by Jessie Rolton

Odyne is the “Greek goddess of pain”, therefore the term vulvodynia literally means “vulvar pain”. Vulvodynia is currently defined as “vulvar discomfort, most often described as burning pain, occurring in the absence of relevant visible findings or a specific, clinically identifiable disease”.

The cause of vulvodynia remains elusive, but it most likely occurs from a variety of sources and represents many different disease processes. Without going into the nitty-gritty, it is likely that there are many different diseases that yield similar symptoms and cause “vulvodynia”.

What keeps it elusive, from my limited research is that it is never caused by the same thing and presents itself differently for each woman (not to mention the male dominated industry that disregards woman's pain as real and important).

Some feel burning all the time and find they can’t wear jeans/pants while others experience the pain during intercourse. Regardless of the cause and how it presents itself, most all physicians and patients agree that the presence of chronic pain, such as vulvodynia, can have profound psychosocial ramifications.

This is my story...

About 9/10 years ago I had quite a traumatic experience with my vagina. I was suffering from re-occuring thrush (one of the diseases that can trigger vulvodynia) and also had to have a cone biopsy for cervical cancer cells. This series of events caused my vagina to continuously send signals to my brain of pain which in turn started to cause a burning and tearing sensation when I tried to have sex.

I thought it would pass so didn’t go see anyone straight away. When I eventually went to the doctors they gave me more thrush cream and sent me on my way - they didn’t investigate any further and I thought I was going crazy. It got so bad I went and saw a gynecologist. He told me I was constipated which was causing part of the problem and that I could have surgery to see if that would help ease the pain, but there were no guarantees, needless to say, I didn’t have the surgery.

Having almost resigned myself to the fact I wasn’t getting any better and that this would be my life, I reached out to the sexual health clinic. The doctor there was incredible. She had a look at my vagina and referred me to the specialist physio and councillor at the hospital (I am so grateful I live in New Zealand where health care is funded because I was in my early twenties at the time and couldn’t afford private health care).

So I started on the journey of recovery.

That was until the relationship I was in started failing. At the time I didn’t see the importance of getting better for myself. So when he wasn’t all to supportive and wouldn’t come to couples counselling I stopped going. The sex became almost non-existent and when we did I would grin and bear through the pain. A few years later we broke up.

4 years ago I met someone new. Things were great, like they are in new relationships - we were happy and spending a lot of time together however I was terrified of the first time we had sex. I had sheepishly told him my concern and he was very supportive. We took it slow and much to my surprise - It didn’t hurt! I couldn’t believe it so I took full advantage of this and thought I was cured!

You know that first 6 months of a relationship - the honeymoon period where everything is amazing, it's going great and nothing is wrong? Well right around then, just when I thought everything was perfect - I got another bout of thrush.

Welcome back, burning painful sex - oh how I hadn’t missed you. I cried. A LOT.

And again I thought it would die down and go away so I didn’t immediately go get help. I suffered through the pain and the tears until my partner urged me to go seek some advice. So back I went to sexual health to begin the journey again. This time though, it really screwed with my head. I couldn’t get a hold of my emotions and that’s when I was diagnosed with moderate depression.

Here I am nearly 10 years on, still seeing a physio and therapist. I am on antidepressants so I can keep my head above water and also trying anything I can to help with the vulvodynia (including seeing a naturopath). My sex drive and actually having sex is non-existent, which is having a MASSIVE impact on my relationship (nearly having us separate) and mental wellbeing.

It’s not all bad - I know what it is now, I am educating myself on different ways to help ease the pain and most importantly I have a support network around me, who are helping me on this journey to recovery.