ALMOST CURED....

Hi,

I've just joined today. I was finally diagnosed with Vulvodynia a few months back, after I'd had it for over a year. A year and a half later I feel I am 99% cured. I just want to say that it can get better because for long time I didn't believe that.

I sympathise with anyone going through this because it's hard to discuss with anyone as it's such a sensitive topic. These forums were the only thing that helped me; doctors, gynaecologists, dermatologists seemed uneducated about this condition admitting 'knowledge of this condition is still in its infancy' and could not empathise with the pain. Luckily my partner was a great support.

For the first few months I tried aloe vera creams, apple cider vinegar, ice packs, cold showers, baking soda baths, canestan cream, each providing only a small bit of relief. As it got worse and I could barely walk anywhere I was put on dermovate, a steroid cream, that didn't have any effect. I put on a stone because it was painful to walk or move which also made it difficult to work : how to sit in a chair for hours, what to wear that was both professional and loose, and having to try to walk 'normally' around people even though it hurt.

I felt very fed up as the pain seemed endless, and it affected my sleep, distraction is always good- if you can be distracted by a book or a film ... I ended up changing my diet, not drastically, but I cut out as many processed foods as I could e.g frozen pizzas, noodles, potato chips, takeaways, alcohol and coffee and started eating more fresh fruits, vegetables, fish, water. I also forced myself to go on a walk every day, even just for 10 minutes, when it was painful and embarrassing because I was walking like I had a limp. Often I'd wait til it was dark outside to go walking to avoid embarrassment. After a couple of months little walks became longer walks, I was eating healthier and I was using silcocks base daily, washing my underwear in baking soda, and had started on licodaine. The combination seemed to work and now the pain is gone. I feel no pain and I am out running three times a week now, which I never did before. Sometimes running felt easier than walking, if that makes sense, because you can do it slowly, only moving your knees and get a bounce going, whereas walking involves the vulva more.. in my case anyway. My advice is keep a positive mental attitude (even though it is impossible sometimes) and try different things to see whichever one takes, or works for you.

So basically what worked for me, and what I am still doing (mostly) is:

1) washing my underwear (cotton of course) in baking soda to avoid any allergens from detergents.
2) I use silcocks base (no prescription needed) as a soap substitute daily.
3) I also use diprobase cream (no prescription needed) if needed.
4) I wear lose clothing and comfortable footwear. Avoid Converse shoes.
5) started eating healthier/going on walks
6) try to distract your mind with something for even an hour's relief e.g a book, a game, positive mental attitude
7) I used licodaine for a while but have since stopped because I no longer feel the pain.

Thank you for sharing this! It is very much needed to hear that women do recover.

I wish I could use ointments to protect my skin, but unfortunately my skin does not handle their lack of breathability  

I wish you the best of luck getting beyond that last 1% of pain

I agree! It's encouraging to hear that someone is getting better - I can't wait to get through this board more (going on vacay, so won't be able to for a while)  and just hear more ideas - I've already taken some of you guy's suggestions and am trying my new "therapies" -  I am hopeful.