Hi, I'm new (from the UK)

Hi everybody!

Great to see that there is a support forum for this! I'm pretty sure that I have vulvodynia, but still waiting for my GP to bother giving me a diagnosis. This all started after I had my first child back in 2007. Very soon after I noticed a horrible burning/stinging feeling upon penetration and it was the same every time. After over a year I went to see my GP who said I probably had a nerve problem where my stiches had been. He gave me gabapentin and referred me to the gyno at the hospital. The gabapentin started working straight away and I was soon painfree, and by the time I finally got my appointment at the hospital there was no pain for them to assess.
I stopped taking gabapentin a few months before I got pregnant again and never felt the pain again. But then a few weeks after I had my second child I noticed strong discomfort on touch, particulary in the area around my clitoris or urethra (if I can manage to climax I don't get a wave of pleasure, I get a sharp, deep shooting pain all the way down my thighs). It was only upon contact at first and I didn't really feel up for sex anyway because of my baby blues, but then suddenly it got much worse. I started getting so much pain that it was sometimes difficult to walk, or sit and my trousers were getting to tight to wear. I also had periods of little or no pain unless there is direct contact. I already have an existing issue with my bladder (long story short, my GP messed up my meds for a UTI and I ended up with an overly sensitiv bladder so I constantly feel full and have to use the toilet at least 20 times a day) so my first thought was that this was something relating to that. I get UTIs at least 4 times a year so I went to my GP and got some antibiotics but it didn't improve.

So after 4 appointments with my GP I've now had another appointment with gyno but the seriously stressed gyno I saw didn't have time to listen and thought that all my problems (I also had a seriously heavy and irregular period) would be solved by removing my copper coil. Well, the coil has been out for well over a week and I still feel this constant throbbing pain.
I have an appointment with my GP on Wednesday and could really do with some help in regards to how I can get a diagnosis. My GP doesn't seem familiar with this (the GP that gave me the gabapentin left the clinic so I can no longer see him).

Get a refferal to a VULVAR CLINIC or PELVIC PAIN SPECIALIST.

or to a PAIN CLINIC.

Goodluck !!!

hi there,

it sounds like you have been suffering with ic for a while now. look into the diet. It may help with frequency also have ic. As for vulvodynia, a women's health physio is better than any one to assess tension in pelvic floor which will be contributing to pain. Gynos i found have been les experienced with these issues. Will write more on monday , too hard on my phone.

Claire x

Hi and welcome. Aussie is right a Women's Health Physio is where you need to be to have the pelvic floor checked out, only being hooked up to a machine with a vaginal sensor in place will give you precise readings and information about what needs doing. V can be caused by tight muscles, weak muscles or tight and weak muscles so it can vary from woman to woman. Strangely I have a friend with burning mouth syndrome and she was also told the coil she had in place could be behind that, I don't know how exactly but it was something she recently discussed with me.

Do they have these clinics in the UK? I have been referred to physio at the hospital before do learn pelvic floor exercises for my bladder, but that was years ago though.

They will have clinics in the UK for sure. Ask Sarah on that one, but any women’s health physio should be able to give you some guidance, it is just finding the right one that is willing to work with you, getting those trigger points to settle and stay settled down.

Have you tried the IC diet? www.icnetwork.com

Some times 'kegles" prescribed to help frequency can make the condition worse and in some cases better, so an assessment by a competant physio is essential, you don't want to do the exercises wrong.

If you gp can't give you a diagnosis - of 'vulva pain' (vulvodynia) - excellent diagnosis doc - then change gp's. I had to go to 4 gp's then 2 gynos to get my 'you have vulva pain' diagnosis. Bloody idiots, not that it really matters, we already know what we have.

Anything else I can help with give me a shout, always happy to give advice. We are all in this together.

Claire

There are vulval clinics but they tend to have a huge waiting list, there's a list in the info section I think but it is exactly as Claire said you need a Women's Health Physio. WH Physios are available on the NHS if you can find one in your area but again have a waiting list because there aren't many but there are private ones who charge the same as normal physios. Mine was private and she charged £32 a session. They can test your pelvic floor to see how tight it is, whether you can relax it etc and give you a program to suit your own needs.

Welcome to the forum..yes there are Vulval clinics...see forum link below

http://www.vulvodyniasupportforum.com/t230-list-of-uk-vulval-clinics

Ask to be refered to the one nearest you