Health Organization for Pudendal Education

Sorry this is a bit on a long message:

I was wondering if anyone else has sore red inflamed skin around the vulva or does everyone just have the pain. I am 30 years old and have been suffering with a left sided vulva pain, burning,red sore skin, pelvic pain and bladder problems for a year. I have seen a dermatologist and gynaecologist and have even been to a sexual health clinic. The gynaecologist first thought it was Lichen Sclerosus but then changed her mind and thought I had pudendal neuralgia due to the amount of pain I was in and the symptoms. I then went to see a dermatologist who diagnosed me with vulva eczema and vulvodynia/pudendal neuralgia. All my tests from the sexual health clinic came back clear (I thought they would as I have only been with my husband for the last 10 years).Since then I have recently visited a pain clinic and seen a specialist who deals with pudendal neuralgia and thinks it is this but wants to try some more treatments to see if it makes a difference.

I have been on Pregablin (Lyrica) since March and has helped the burning pain a lot - before I was on the tablets I hadn't had a proper nights sleep for months due to the pain and constant urination. I also use Vaseline on the inflamed skin, shower with am emulsifying ointment, use lidocaine ointment. The pain has improved slightly as before I could hardly walk and the pain was so bad I had thoughts of suicide but would never have done anything due to my family and lovely husband.

I haven't been able to have sex for over a year now and am desperate for a baby (had a miscarriage last year with my first pregnancy).

I'm really worried that I could have vulva cancer as no one on here seems to mention that there skin is inflamed. Does anyone else have problems with their skin or does everything look normal but painful? I keep telling myself that if a gynaecologist and dermatologist have examined my vulva then they would know if it was vulva cancer but they have never taken a biopsy. I don't know if I should just carry on with what I am doing or should I get someone else to examine me to see what they think?

Hope I don't sound too much of a loon but would really appreciate your comments xxx

Here is a link on it; it sounds like it is more about bumps and lumps rather than what you describe.

http://www.cancer.org/Cancer/VulvarCanc ... -diagnosis

Sparkle,

Yes, some people have red inflamed skin with PN although it is not one of the more common symptoms. As I understand it, the theory is that nerves are what control the dilation and constriction of blood vessels and if nerves are sending the wrong message you can have an inflammation at the nerve endings. You may want to contact one of the PN experts listed on our site if you feel your current treatments aren't adequate. Do you have any idea what may have been the start of your pain -- did you have an injury or any precipitating factors?

Also, those creams and things that you are using could be causing the redness. In the beginning my gynecologist was grasping at straws and giving me compound creams that were burning the hell out of me. Just saying it's something to think about.

I have redness of the vulva too. But not enough to explain the horrific pain I have. Inflammed nerves can cause inflammed tissue. When my PN first began, I got a vulvar biopsy. All clear. Maybe you can discuss having a biopsy with your doc. At the very least, it will ease your mind about the cancer issue.

Emily B.

Thank you so much for your replys - Emily how was the biopsy when you had it? Did you have to have stitches and did it take long to heal?

My main vulva burning and pelvic pain started when I was pregnant and had a miscariage (had 9 internal scans which can aparently press on the pudendal nerve).I had had a bit of vulva/bladder pain before I was pregnant but nothing like now. My PN doctor thinks I may have been proan to this as my job involves sitting a lot at my desk and have had IBS since I was a teenager.

Really appreciate everyones feedback xx

I had the vulvar biopsy many years ago. I was already in so much pain that the biopsy pain seemed the least of my pains. I don't remember having any stitiches. I think it was what they call a punch biopsy. I guess you'd have to talk to your doctor about what kind of biopsy you should have.

Emily B.