Diagnosed Recently

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up with a burning, raw feeling all over my vulva and extending down around my back passage. Unfortunately this pain has been constant since. Sometimes it is accompanied with the original shaper pain I felt in my clitoris and sometimes with a sharper pain in the left hand side of my vaginal entrance, always this constant sore, burning raw feeling.

I have seen several GP’s, one of who whom was lovely, and one of whom I left in tears after she basically said it was imagining it!! I have been prescribed thrush treatment, hydrocortisone creams, barrier creams and Betnodate steroid cream. All to no avail. I was then referred to a vulval clinic at a local hospital but the prospect of waiting weeks upon weeks just to see someone, sent me on the pathway of private health care. I saw a gynaecologist 3 weeks ago who diagnosed Vulvodynia and then proceeded to tell me that there was no cure, its complicated to treat and some women have it for life!

So now, completely terrified after that diagnosis, I have been doing my own research and have found this forum. I am very emotional, I feel alone and am quite scared for what the future holds for a single woman with this kind of condition.

I am using Lidocaine twice daily and came off the mini pill 1 month ago just in case. With it being a new diagnosis my Gynaecologist didn't want to start with any medication straight away. The Lidocaine helps with the immediate pain but doesn’t seem to be doing anything else in the long term.

I guess I am here for reassurance, and any tips/advice people might be able to give. I’m sorry for the long post!

flissyg wrote:Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up with a burning, raw feeling all over my vulva and extending down around my back passage. Unfortunately this pain has been constant since. Sometimes it is accompanied with the original shaper pain I felt in my clitoris and sometimes with a sharper pain in the left hand side of my vaginal entrance, always this constant sore, burning raw feeling.

I have seen several GP’s, one of who whom was lovely, and one of whom I left in tears after she basically said it was imagining it!! I have been prescribed thrush treatment, hydrocortisone creams, barrier creams and Betnodate steroid cream. All to no avail. I was then referred to a vulval clinic at a local hospital but the prospect of waiting weeks upon weeks just to see someone, sent me on the pathway of private health care. I saw a gynaecologist 3 weeks ago who diagnosed Vulvodynia and then proceeded to tell me that there was no cure, its complicated to treat and some women have it for life!

So now, completely terrified after that diagnosis, I have been doing my own research and have found this forum. I am very emotional, I feel alone and am quite scared for what the future holds for a single woman with this kind of condition.

I am using Lidocaine twice daily and came off the mini pill 1 month ago just in case. With it being a new diagnosis my Gynaecologist didn't want to start with any medication straight away. The Lidocaine helps with the immediate pain but doesn’t seem to be doing anything else in the long term.

I guess I am here for reassurance, and any tips/advice people might be able to give. I’m sorry for the long post!

You need to go to a specialist consultant in vulvodynia and not a GP. Do you live in UK? Wendy Reid at Royal free is the best

Creams don't do much for nerve pain. Are you using lidocaine 5% ?

The gold standard is medication for nerve pain like Amitriptyline and Lyrica

Lyrica is no longer expensive so GPs have no effin excuse to not prescribe it.

Most of all, remember most women either recover or manage this very well. You can also read Sukigirl's thread on patient.info where she says she got better with desensitization and amitriptyline 50 mg.

You need to find a pelvic physiotherapist. I did almost 2yrs of it (not consecutively). They can diagnose whether your pelvic floor muscles are too tight or not coordinated. Google an image and you'll see that they make a hammock /basket around your bladder and vagina so if they are too tight causes a lot of pain etc. I was diagnosed 8 yrs ago and had a car accident 3 yrs after that which made everything worse because the back therapy increased the time in my pelvic muscles. That's when I saw my firsymt pelvic physiotherapist and started therapy and exercises. There is hope.. hang in there.

flissyg
Like me you may be unable to go to the recommended London hospital. It took 8 months for me to get an appointment at the nearest gynae clinic and advice was pretty useless. I've had this condition for 18 months and been prescribed numerous creams, all of which produced horrendous burning and discomfort. Eventually I discovered that they all contain parabens, variations of liquid paraffin and/or alcohol and produce an extreme allergic reraction. The only topical thing I've found which I can tolerate and which provides some relief is called YES vaginal moisturiser. It is organic and water based, available on the NHS and a tube lasts ages.Google it to see variations of the same product. I also take Pregabalin 50mg morning and evening but am doubtful if this helps - it does send me to sleep.

Please go to Target and get Vagicaine - it’s very inexpensive and provides longer term relief! I’m so sorry...blessings to you...