Newbie to vulvodynia

Hello all!

I'm 26 and I was diagnosed with vulvodynia this week. It's been a hard slog getting to this point but reading posts on this forum is a comfort to know I'm not alone.

My story started in June this year where out of the blue I was struck with this immense pain. Naturally I assumed that it was a water infection as I've had a few of them in the past so off to the GP I went to get antibiotics. A week later the pain came back so it was another trip to the GP. I did a water test there where the doctor concluded that it wasn't a water infection and sent me on my way, still in pain. A few weeks went by where the pain was constant, so after blasting myself with over the counter treatments for UTI and thrush I thought I got rid of whatever it was that was plaguing my nether regions. How wrong I was. It came back with a furious vengeance, so a pleaful phone conversation with the medical receptionist with a superiority complex I managed to get a telephone appointment with another doctor. I told him of my plight, to which he flippantly told me to go to hospital. You know, the place where there are actual serious medical emergencies. I refused not wanting to waste my time in A & E and take room and time away from someone who would actually need it. So disparingly I went on, pain and all. After a while the burning rawness died down, not completely going away but enough for me to get back to normality again. Until the end of August where I had another flare up. I went back to the GP who thought it could be a skin condition and gave me hydrocortisone cream, which made it 100 times worse. A few more weeks went by and another trip to the GP to get a swab to see if there was anything bacterial goining on, to which the results concluded that no nasties were lurking around.I couldn't take it any more. I was in tears. This thing had taken over my life. I didn't want to go out any where because I'd be in agony, I couldn't concentrate at all in work, I stopped going to the gym and it started to effect my relationship. I cracked and told my mum who was furious with what doctors had done (or in some cases neglected to do) and she dragged me to A & E just like the third doctor had suggested. They couldn't do anything for me as their gyno knowledge was limited and sent me to the womens hospital, where a patronising nurse didn't understand why I was so distressed. My mum being the protective mamma bear that she is stuck to her guns and made sure we waited to be seen by the doctor who was miffed as I wasn't doing anything obvious, like bleeding. She told me I needed to go back go my GP to be referred to them so off I went back to the GP to be referred to a specialist with a 2 month wait. The day finally came and she poked and prodded for a bit and took swabs to be sent off for testing. They came back negative of course, just like the previous swabs had. There was a 4 month wait to see her again but there was no way I could wait that long, after already suffering for 5 months. I went to my GP to see if there was anything thet could perscribe in the meantime while I wait, which they were reluctant to do. However they did write off to the specialist to see if I could get an earlier appointment. By sheer luck I managed to get a cancellation and saw her this week. It was a little disappointing to hear there was no miracle cure and that there's no guarantee it will ever go away but at least there's a name for it and reading through your stories I know I'm not alone.

Thank you for telling us your story. I am pleased you have found this forum. I have read all of the posts since the start of this forum. They will help you to cope better with this condition and help you to decide what therapies you want to try. Then with this knowledge you can go back to your doctor and tell them what you need to be prescribed. I get cross when I see a doctor who does not now anything about this condition. Anyway, I know we are here to support you in your journey with this condition.

It's a common story unfortunately - too many medical professionals lack knowledge about the problem. But it's good that you now have a diagnosis. You're right that there's no miracle cure. But that doesn't mean you'll be suffering forever. Plenty of people do get better from this horrible condition. It can take a lot of persistence and trial and error to find what helps you - or what combination of treatments/lifestyle changes/dietary changes helps - but be stubborn and don't give up.