My story so far!

Hey everyone  

I'm so pleased that I have stumbled upon this site, I now already feel more hopeful and know that at least I am not alone. People seem so kind and supportive.

Will give you the background info of my own experience with vulvodynia:

I first started having what can best be described as a burning feeling just inside my vaginal opening and the vestibule at 17, back in 2009. To my memory it came on randomly. I think one day I just woke up and it was just really sore and remained sore, but I can't really remember.

I don't remember any obvious trigger, maybe there wasn't one,  but over the course of a few months before the pain started, I went on the Pill (yasmin i think?) I hadn't had sex yet but requested to try the pill due to acne and very painful periods. In 2009 I also had a urine infection, went on antibiotics for the uti and had a thrush infection (not caused by the antibiotics as it was a few months after)

I'm thinking maybe one of those things or a combination of them set up sensitivity and disrupted the flora and fauna of the vagina...who knows. All I know is I was perfectly fine before and wasn't aware of my vagina every second of the day. Luckily I have been fortunate health wise and have never had any serious conditions. I am of a healthy weight and eat a balanced diet.

When I was treated for the thrush and urine infections, any irritation cleared up temporarily. I was fine for a few months after which is why it's so puzzling!  

After the soreness started, I did go back to my doctor and she suggested trying a different form of birth control. I went on a different kind of pill. No change. About 2 months later, in early 2010, I had my first sexual relationship. Sex with this burning feeling wasn't extremely pleasant but i had never known any different, and it wasn't always extreme pain. I then went on the contraceptive injection, and had 3 bouts of that.

Across 2010, 2011 and 2012 I just got on with it! Sometimes the pain was unbearable, sometimes it wasn't so bad. I had got tested for every STD under the sun several times, had blood tests etc. Everything was fine. When the sexual health nurses and my G.P examined me they always thought everything looked normal and health except ocasionally they said it looked a little red and 'angry'.  

Finally at the beginning of this year my G.P referred me to a gynecologist. I had to wait 2 months for the appointment and when I finally did have it, she was also confused! She did the cotton bud test which didn't cause me excruciating pain. My pain isn't really provoked, it's just always there. I know some of you have the pain upon physical contact.

I was prescribed Gabapentin but it did little or nothing to alleviate the pain. I took it for about 6 weeks but had to stop as it was giving me severe headaches and slightly blurred vision (it is a major drug used to treat epilepsy! ) I had been told that it was brilliant for some and didn't work so well for others. Am now awaiting my follow up appointment to see what other options I can try.  

Also, sex is sometimes okay or even good, and other times I am not in the mood at all. I have been with my boyfriend for nearly 2 years. Luckily he is understanding and lovely. He has also recently developed epididymitis (inflammation of the testes and epidymus) , so we are kind of going through a similar thing. I wondered if it could be related but GP says that's unlikely..

Throughout the day my pain can vary at random.

I am finding this whole thing very debilitating and it is worrying that doctors seem to know so little about it. It is just so confusing to sometimes be in such pain and not know the cause. I have tried many creams to no avail. Some days I just want to scream and cut the whole area off! Sometimes I can't get off to sleep because of it.

Has anyone had any relief from biofeedback, botox or acupuncture? I am concerned that because my pain is slightly INSIDE the vagina that they would have to insert needles and things IN me.  The idea of a vestibulectomy is also frightening but not something I would rule out if it would help!

So glad to hear that some of you have got cured. That is brilliant!  

 

Hi,
Your story sounds very familiar! However when they did the q tip test on me I think I nearly jumped off the bed! I have provoked and unprovoked pain, which can be just inside the vagina. It's normally extremely painful around the entertance and just inside. I was prescribed trimocate cream which u can't really use inside but I was told I could use it just inside, and the time it was a little red a sore it didn't bring down the inflamation but didn't really help with the pain and I was a little concerned about using it as it a steroid cream. I would suggest you see a women's health Physio therapist, they seem to know more about this kind of thing than any gynochologist I have seen and I must have seen 3 by now, the other option is to research gynochologist in your area who have skills in vulvar pain.

Where are u based ?

Kt

bumping up my original post as still in pretty much the same position like 3 years on, and in case anyone else's in the same boat. Xxx

Warm soaks in epsom salts (magnesium) help me when I have time to do it.