Vulvodynia?

[MeredithAngel647]

I have had chronic pain in the inner lips of my vulva, where they meet at the top, for over a year now. It started out as a feeling that something was "there". It wasn't really pain. But then it started becoming very painful when touched. It then morphed into a constant pain for a few weeks, but dulled over time into only being painful when touched. Now, after over a year, the pain has flared up and hurts even when not touched. This affects me a great deal. I cannot touch it directly when washing. I have to be careful how I clean myself after going to the bathroom, and it obviously interferes with sexual activity. It is beginning to affect me psychologically as well. My gynecologist told me it was called "vulvodynia" and gave me an estradiol/lidocaine compound to use. But if I can't touch it, I can't get the cream onto the affected area. She then prescribed Elavil, but I have not responded well to antidepressants in the past, so I am reluctant to try it. I have heard of other treatments involving correcting pelvic floor abnormalities, but have no idea where to go for this. I may resort to seeing a chronic pain specialist soon. Can anyone tell me how common this problem is, what may be the cause, and any treatment suggestions? Would a history of HPV contribute to this in any way? Any thoughts would be helpful. I'm at wit's end with this pain.

[Debbie Miller, RN]

Hello,
This is definitely a troubling situation for you. It sounds like you are getting good medical advice. In addition to what your doctor has prescribed, some women benefit from physical therapy, massage, and biofeedback because anticipation of pain can create additional pain. In cleansing, use only plain water, rinsing gently, always use a lubricant for sexual activity, and be patient because solutions may be slow in coming.

There is a National Vulvodynia Association (nva.org) where you might get emotional support and eduction about this condition. Knowing others are also suffering can help when you are seeking answers since they have learned by trial and error and can share their experiences with you.

Good luck with this.

[Candece13]

I was diagnosed with vulvodynia 6 years ago. My pain is EXACTLY where your is. The past 4 years I have had minimal to NO pain. I do not know what made it better. The last 2 months I have been in a BAD flare up and do not know what caused it. I saw a new specialist in my area Friday and he put me on Lyrica. He believes it is musculoskeletal. He put me on Lyrica 50mg, 3 times a day. I have pain in my thighs when touched and a stightly twisted spine (lower vertabrae) and my SI joint is not out of whack. I see a chiro for all of that. He also believes my VV is nerve and muscle related. The gyn said I have a weak pelvic floor as well (my son was born 12 years ago and weighed 8 lbs, I was a small woman). I do not do my Kegels at all. Maybe a few every now and then. I know 2 women who have beat this. One treated naturally for yeast using grapefruit seed extract, took calcium citrate with magnesium daily and uses a product called ThreeLac. The other woman started testing the pH of her urine and is now alkalizing her body (test urine first thing in the morning and again before bedtime). She also treated for yeast, but only AFTER she started alkalizing since an acidic body harbors all kinds of bad invaders. I have been alkalizing. It is harder than you would think. I ate ALL alkaline yesterday and this morning really was at about a 2 or 3 on the pain scale. I ate some alkalizing butternut squash soup and was still fine, then I ate an egg salad sandwich and I am burning soooo badly. So I am thinking there is something to this. I also have ultrasound therapy (2 times so far) at the chiro as well as electro-stim (1 time so far) where they place little pads areas where main nerves are located and it sends little electrical pulses thru the nerves. It wa strange, but not painful, then I get adjusted. I am not sure if I can post websites here or not, if so I will post again and give you the 2 websites for the 2 women who are cured of their vulovodynia. Oh, I forgot to mention, the Lyrica I was only able to tolerate for 2 days. It was an AWFUL drug. Awful really isnt the word, but I will not use another pill. My insurance covers only generics. There is not one. The med was $217! Thank God, I only got a weeks worth. You were not like this always, there is a cure, unfortunately doctors want to throw pills at us and we are in pain enough to take them. I am trying to alkalise, but I wanted that quick fix too, if there really WAS a quick fix we would all be better and not have burning on our vulvas! I think the area we have pain is so bad because there are so many nerve endings right there just below the clitoris. I have the burning around the vaginal opening, but its not so bad, its the area from the clitoris to the urethra. Look up a product called Acid Redux. It is by a company called Evergreen Nutritionals. I just got a bottle, I do not sell this or make $ if you use it so I will not post a link. There are testimonials there. I was approached 6 years ago b y them to try their product, I didn't know anything then about the pH of the urine etc. I have to educate myself because even the specialist said they don't know what causes it, he said he was able to only help a few women who have come to him. I bet if it was a man's penis that was burning and he couldn't wear pants or have initercourse, there would already be a cure. There won't be much need for Viagra if more and more women keep getting Vulvodynia. Maybe then there will be more $ $$ and willingness to research our disease.

[Debbie Miller, RN]

Hello,
Thank you for your response. The purpose of forums such as these is to share with one another. We can learn a lot from the experiences of others. Alternative therapies are a part of health care. Because research is often limited on these, we can't always say whether or not we can predict the success of the treatment but sometimes it's a matter of trial and error to see what works for the individual.

Medical doctors also have limitations and most alternative treatments aren't part of their training. An open mind on possible solutions can go a long way in helping patients. When traditional medication does not help, it is often worthwhile to seek other treatment. But, you should continue to keep a leery eye open because there are still expensive "snake oils" out there - not just in the pharmaceutical industry. It can be hard to determine when something is useful, useless, or even harmful.

Good luck to both of you and others suffering from this very painful and frustrating condition.

Best wishes.