Vulvodynia? Or something else?

Hi there,

sorry to to hear you are in so much pain, if it's Vulvadynia then it can be treated.  My Vulvadynia started on 22 November last year, one day I was ok, next I had this awful burning, stinging pain all around the vaginal area and also back passage as well.  I had no idea what it was, at first I thought it was a water infection so went to see my GP, she put me on localised HRT cream as I have gone through the menopause and she thought that was the problem, but after a couple of months on HRT cream it was no better and I looked up on line and like you also suspected Vulvadynia but was praying it wasn't as lots of people had this for years, and I was becoming very depressed with the pain.  It got to the point where I could hardly walk because of the awful stinging pain and to sit was agony.  I also had an ultra sound but all was completely normal.  My next port of call was a referral to see a gynaecologist but as I had to wait 2 months on NHS I decided to go private, and got an appointment on 1 February. She examined me and said it was Vulvadynia.  She assured me it would eventually go, but would take some time.  Firstly she told me to change HRT to Vagifem, and then prescribed a drug called Nortriptyline which is a muscle relaxant.  Also no soaps or anything to use on that area.  And to go without pants at night and in the day if possible too.  I started on the Nortriptyline at 10mg and slowly increased and am now on 30mg. There are side affects such as constipation and a dry mouth but your body soon gets used to the drug.  At the moment I am getting better, I haven't had the stinging or burning pain for around 10 days now, although I still get an occasional uncomfortable feeling inside as if a tampon had been inserted wrongly but not too bad.  

I also went went to counselling because I was so anxious that this would never go, which has helped with the worry.  Also I have started doing yoga poses, such as baby pose and knee to chest pose, and squats, every day.  I also do a 40 minute meditation cd for relaxation.  I have also started having acupuncture as lots of people have said this really helps along side the drug.  I have my second session tomorrow and I think this is helping lots.  

You our could mention when you see your gynaecologist that you think it may be Vulvadynia.  Another thing to try is every time you go to the loo, always wipe with cold water clean the areas and apply either coconut oil every time or Dermol 500 cream.  This has helped me lots too.  I also got the YES lube from my GP and use that every morning too.  

I have also changed my diet in case it's that so I no longer eat tomatoes, potatoes or peppers.  I also have cut out a lot of dairy and sugar, I now only eat fish, meat, veg, fruits, eggs, cheese, nuts. And also only drink water, no tea, coffee or alcohol.

its a lot of things to do but if you seriously want to get better you have to try it all.  It takes up a lot of my day at the moment doing all these things, and I am lucky in that I have been able to work at home these past 3 and a half months.  I am gradually getting much better and once it has completely gone, I will start to introduce the foods slowly one by one and gradually reduce the Nortriptyline again.  Also you do need to rest to recover, no exercise or too much walking, just relax and the agitated nerves will slowly get better.

hope this helps, 

Firstly let me say that you are not alone, there are many women on these forums who have the same experience as you. What is unusual is your young age and when I read you post it sounded very much like something else I have read. I don’t know what country you are in, but here in the U.K., London, there is a play called “The Internet is for Adults” which includes a woman who has vulvodynia and it is based on a true story:

 “When Callista first tried to use a tampon aged 12, she experienced a searing pain at the opening of her vulva. For years after that, even while she was sitting down or going about her day she would experience a burning sensation between her legs. When she touched her vulva, she says the pain was much more intense and it felt like she was being cut..... Eight years later and after seeing 20 different doctors, Callista finally found herself in front of a specialist who told her she had congenital neuroproliferative vestibulodynia. It meant she was born with 30 times the normal amount of nerve endings in the opening of her vagina - and she was able to have surgery to cure it.”

You need to find a specialist who understands what you are going through. In the meantime you might want to look at my post “How I cured my vulvodynia” where I tell the story of my journey to being pain free. Other women have posted their success stories on there too. You do not have to suffer for the rest of your life.