“Well, you need to have sex, if you don’t it will only make things worse,” the gynaecologist told me.
At the time, I was a single woman at the age of 24. For lots of people, being told to have sex wouldn’t be much of an issue, but when you experience pain during sex like I do, those are hardly the words of comfort you want to hear.
Since the age of 18, sex has been a problem for me.
As a young girl, sex education didn’t teach me which feelings are normal and which aren’t, and I never learnt anything about issues or difficulties I might face in the future. As a result, for years I thought painful was how sex was supposed to feel – other women must experience this pain and just get on with it, right?
But from the way everyone else spoke about sex, I felt confused. It didn’t match up with my own experience. I felt lonely, isolated and upset, so I turned to a doctor for help.
I visited my university doctor 12 times over the 4 years I was studying.
“Maybe it’s this…”
“Maybe it’s that…”
“Can you test me for this..?”
“Can you do a swab for that..?”
I went back time and time again with my own internet-researched-suggestions of what might be causing the pain I was experiencing and what the solution could be. During each appointment I was examined, assured that physically I was fine, and told “it’s all in your head”.
Being told a problem is ‘in your head’ is never easy to hear. At the time, I understood it to mean that there was no solution available to me and I would need to work this one out on my own. Did I need to be more relaxed? Was I too tense?
I was young and clueless and I had no guidance whatsoever. It wasn’t until I eventually opened up to my mum that I realised I wasn’t being proactive enough. Yes, I was doing all of the research I could do on my own but I didn’t really know what I was looking for. I didn’t even know at this point that I could request a referral to a gynaecologist myself.
Years passed by, and I visited the hospital every 4 months in the hopes my next NHS appointment would shed some light on what was happening to me, but the process moved slowly. Each scan ruled out another potential cause of my symptoms, which I knew was a positive thing – but with each month that passed, the experience began to take its toll on my mental wellbeing.
I started to fill the gaps between these appointments any alternative method I could think of – Acupuncture, Hypnotherapy, Psychosexual Counselling… Each new option gave me a glimmer of hope, but time and time again I had no luck.
I felt let down by my doctors. I felt as though no one was taking me seriously. I’ve cried in medical appointments more times than I’d care to admit and each referral to a different department left me feeling abandoned – as though no one was willing to take the time to learn about the pain I’d been experiencing for years.
I was the one coming up with potential solutions and offering ideas to my doctors, but every suggestion I made was cast aside. I even had one Gynaecologist laugh and shrug while casually asking me, “oh, what are we going to do with you?!”, trivialising what I was going through even further.
According to the NHS, vulval pain affects women of all ages, although symptoms often begin before the age of 25. A study on almost 5000 women in America showed 1 in 6 women experienced the symptoms of vulval pain for 3 months or longer, with 60% of women visiting more than 3 doctors, many of whom provided no diagnosis.
How is it that so many women are experiencing the same problem, yet so much of the medical world is completely oblivious to our pain? Instead of being supported, we’re being made to feel like we’re ‘crazy’. I believed something was really wrong with me until one day, I found an online forum that changed everything.
All of a sudden, I found a group of women from all around the world providing support and advice for each other. It was unlike anything I’d experienced anywhere else. It was the conversations I had in the forum that led me to find a doctor in the UK who sounded as though she had not only heard of, but actually treated, many people in my position.
After all that time, all it took was a 15 minute appointment to lead to the diagnosis I’d been searching for. It may have taken me 8 years to get here, but I can finally say it;
I have Vestibulodynia.