Provoked pain in vagina entrance for 12 years - finally treated

Hello,

I've never posted on one of these forums before, but I've had huge benefit from reading other people's experiences while trying to research what was wrong with me. I just want to share my experience and eventual diagnosis/treatment in the hope that it can help other women suffering the same condition.

I have had provoked pain just inside my vagina for as long as I can remember - first noticed when I started using tampons in my mid teens. Unfortunately I had the impression from speaking to others and family that this was normal (although with hindsight it was not). The pain was like a red rawness combined with feeling like there was an obstruction just inside (which I thought at the time was my hymen). Sometimes the pain was worse than other times (maybe depending on the angle of insertion etc).

The first few times I had sex in my late teens it was excruciating - again I thought this was normal since it was the first few times, and it was like a red raw pain as well as a stretching pain. When it didn't go away after over a year, I was referred by my GP to see a gynaecologist. Unfortunately the doctor I saw was not very sympathetic and told me it was a psychological problem. She gave me dilators to stretch the vagina and said the more I was imagining the pain the more I was tensing up, so the dilators should help. I struggled on with these dilators as a result for a year or so, until pretty much giving up as it was really painful to use them and I had not made any progress with the pain.

As a result of the pain, I avoided any further physical relationships for a number of years, and thought there was nothing I could do to get better after the first gynaecologist's assessment.

Having started a job in my early 20s that meant I was fortunate enough to have private health, I tried my GP again in the hope of being referred for a second opinion. I was lucky that the GP I saw was particularly interested in women's health issues and she recommended I try women's health physiotherapy before going down any sort of surgery. I did have physio (and homework exercises) for about a year - and through the provoked pain my muscles were (and to be honest continue to be) really tight (hypertonic pelvic floor). However I knew that the pain wasn't primarily muscular - the red raw sort of feeling (my physiotherapist didn't understand this) - so wasn't convinced that this route was really going to solve my problem.

A year later I tried the gynaecologist route again in despair that I would never be able to have a normal relationship. I had opinions from two London gynaecologists (both senior consultants with very good reviews). Neither of these gynaecologists were able to diagnose the particular condition that I had - and recommended dilators again, this time in combination with a weak local anaesthetic gel (lidocaine). That made it very slightly less painful but I was still in despair that I would never be able to enjoy sex.

However, this year after extensive further research I came across this article https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4540384/ and went to Birmingham to see the consultant Miss Gabrielle Downey, who was mentioned in the paper, as the condition the author talked about seemed to fit my symptoms.

Miss Downey diagnosed me with vulval vestibulitis pretty much straightaway on examining me, and referred me for surgery (a Fenton's vestibulectomy) to remove the inflamed tissue. She was the first gynaecologist to actually listen to me and she has an excellent bedside manner. I felt comfortable asking her all sorts of questions before going ahead. I was able to have this surgery within about a month - all went fine - and this was now three months ago. I would now say I am 95% pain free (the remainder being scar tissue which Miss Downey thinks will resolve itself following a recent injection and with time to heal), and understand that it is very unlikely the condition should return (thankfully!).

Her treatment has genuinely changed my life - I now feel able to be open to new relationships for the first time in 7 years (I am now in my late 20s) and feel 'normal' for the first time.

While I'm delighted with my progress I know how lucky I was to be able to try all those different doctors and the physiotherapy first before finding the doctor and treatment that worked for me. It's such a shame that this condition isn't more widely known even among gynaecologists.

I hope that by sharing this story, other women suffering the same symptoms will know there is a doctor out there (in the UK) who can help (and as a side note, while I did see her on private health insurance, her fees - including surgery - were a lot more reasonable than the London doctors I saw who weren't able to help me at all!)

I would be very happy to answer any questions if that would help anyone.

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