Share

Joan, I too suffer from vulvodynia. I have taken steroid cream, and multiple other medications to help with the pain and inflammation. I know how it can effect your quality of life and turn things upside down...I don't know if you're a christian, but for me, prayer helps a lot. I have since found a wonderful doctor (after seeing so many) who is very patient and has a great bedside manner. He has helped me a lot. I have also found help through NVA.org. If you need to chat, you can respond via my post, I know how much it helps to talk to someone who understands what you are going through. God Bless! Iris

Joan,
I am so sorry you are going through this! After reading your story, I wanted to learn more about vulvodynia and found this information (I am sure you already know this; it is a basic brochure):

http://www.acog.org/publications/patient_education/bp127.cfm

After reading the above info, I found that there are some other options that you did not mention in your post, and I was wondering if you've tried them or have considered them:
- avoiding foods containing oxalates
- therapy (if you/your husband are having difficulty with chronic pain and lack-of intercourse)
- surgery

take care,
Alison B

I suffered from Vulvodynia the worst last year. I had it so bad, I had no other choice but to devote my life to it. I know what you mean about the icepacks... I actually walked around with them in my underwear all the time, but it really wasn't enough.
I tracked my symptoms: time of day, temp, everything and was eventually able to determine it was a hormonal imbalance. I tend towards natural cures, so after much trial and error I was able to re-balance my body's ability to make hormones using high quality vitamins and other natural approaches. But in your severe case if you're not opposed to HRT, you could have your hormones checked and look into this kind of relief right away.
I was only 25 and my lack of hormones sent me into a state of menopause. Once I got my periods back and my hormones better adjusted, my pain went away 95%. I am writing a blog/story about this here too for the full story. My friend who had V much longer than I, also got relief from types of HRT. It kills me to see people go through the torture I had. I recently joined a team: http://www.curetogether.com/Vulvodynia/ that specifically addresses this and other chronic conditions. It is designed to open up world-wide research and help people discover treatments faster. I hope you can find additional treatment options and reviews there to help you asap. My heart goes out to you, many prayers.

Hi Joan,
This sounds like an ordeal and difficult to live with. I have had a similar sounding problem on occassion that seemed linked to eating too many mixed nuts. Almonds are ok in my diet though and good for many people; but too many oxalates (found in nuts) are noted elsewhere also to be a problem for many with vulvodynia as well as for those suffering from herpes.

Joan, I am a 56 year old woman and have had vulvodynia since I was 45 yrs old. It took me 10 months to be diagnosed properly. My pain was exactly what you described and I had urinary frequency as well. What I tried - and it has worked for me is Elavil (an antidepressant taken in low doses). There is some type of blocker in it that cuts the pain message from getting to the brain. I started at 25 mg once a day (taken before bedtime) because it makes you sleepy. Within 2 weeks of beginning the drug the pain started to lessen and eventually dissipated. I am pain free today, However in the last 2 years my inner labia has disappeared and my clitoris has fused - this is a condition called lichen sclerosis. You may want to research this as well. I realize that many women don't wish to take drugs but for me it has been a godsend and has meant the difference between functioning normally or not at all. However,since I've been on Elavil for 10 years, I think that my body has gotten used to the dosage so I've had to up the dosage to 35 mg per day and now am at 45 mg per day. My dermatologist who treats this condition has told me that the highest dose she's encountered with one of her patients is 100 mg per day. I have thought of trying something else and some of the conversations on hormones are interesting but so far the Elavil is working. Re: finding a doctor to treat you - if you join the NVA they will provide you with a list of doctors in your area (or area closest to you) who treat vulvodynia and a support group. If unable to attend a group you can probably arrange to talk to someone by phone or by email. Each person is different and what works for one may not work for the other - just keep trying till you find a solution that works for you. Hope that helps!