My Life with Vulvodynia

So glad to have found this site. And just let me say how brave I think we all are for continuing to try and find answers. I am 50 year old and post menopausal. I was diagnosed with vulvodynia about 4 years ago when I started going thru menopause. The vulovodynia started after a yeast infection. At first it didn't seem like such a big deal as there was only pain during intercourse which we were still able to have as long as my husband was gentle with me, and then the pain would disappear about 30 minutes later. I have an amazing husband who is very understanding and supportive. We have now been married 29 years. I did try bio-identical hormones and the estrogen seemed to take away the pain. I had also tried vagifem which also worked, but I was concerned about the estrogen as I had small breast cysts. About a year ago I developed an aching that went from inside my vagina on my right side and into my butt area. I also had aching down the back of both legs, and the vulvodynia was on my left side. My GP said I had pudendal neuralgia and prescribed a nerve medication. My dermatologist/gynecologist who treats me for vulvodynia agreed with my GP. I couldn't sit without pain, wore only stretchy pants, stood at the office and pretty well laid on the couch and cried every night. It was a devastating time, but I decided I was going to do my research and figure this out. I did not believe I had pudendal neuralgia as I had not fallen of a horse or done anything to cause such nerve damage. After much determination I found a pelvic therapist who confirmed I had vulvodynia on my left side, tense vaginal muscles on my right side (I tense my vaginal muscles without realizing it) and hamstring pulls in the back of my legs, again mostly on my right side. My therapist taught me how to go inside the vaginal area and touch and release on the sensitive skin to desensitize the area. On my right side I would massage the muscle in side the vagina and I did lots of stretches for the vaginal area and the hamstrings. I had to do all the stretching and massaging very gently at first, if I over did it I would be in pain. While still doing the pelvic therapy I started doing acupuncture which also helped. None of this was cheap, but thankfully my husband has a wonderful extended health plan. After about a year and a half I was much better and able to sit and wear jeans. Unfortunately there was still pain with intercourse. So about a month ago I decided to try vagifem again to see if I could have pain free sex. But this time when I used the vagifem it burnt me. I was using it every 3 - 4 day and tried it about 3 times before I realized that I was having a bad reaction to the vagifem and that it wasn't just my body adjusting to the estrogen. Major panic attacks set in. The pain was constant, I was going on a trip in a month and couldn't get rid of the burning. Once again I was wearing stretch pants, sitting on a special pillow with a cut out and not having sex. Even the Sunflower seed oil that I have always applied for vaginal dryness seemed to burn. I started taking lorazapam for my anxiety. Thankfully, I found this web site and started to read all the advise you girls offer. I had dilators and started using them, but instead of just inserting it to stretch me, I started to turn it as one of the members had suggested. I also started using vitamin E for the external vaginal dryness which worked. Thankfully the pain settled down enough and we were able to go away and have a wonderful trip. So once again I am back to sitting, walking, swimming, wearing jeans and having sex with pain. Which I am thankful for. I would love to have it all, including sex without pain, but if this is as good as it gets I am thankful. I will continue using my dilator daily and turning it to desensitize the pain. I also rinse my vaginal area 2- 3 times a day while I sit on the toilet to rinse on off the urine which can sting, then I apply either sunflower seed oil which I can once again tolerate or vitamin E oil. I take a vaginal acidophilus once a day and omega 3 fish oils 3 times a day for vaginal dryness. Thank you for this web site. I hope that something I have said here today will help someone else.

My best to you all
Diane