Fibromyalgia Community

YES! It's called vulvodynia, (or vulvar vesitbulitis, they're similar) and it's excruciating! It hurts to urinate, have sex, use tampons, sit, wear jeans, walk, ride bikes, the list goes on.... For the first year that I had it and was undiagnosed (and untreated), my husband and I could not have sex at all. It felt like I was being cut inside. I have it under control for the most part now, after MUCH research and trial and error. I also have a bladder disease called interstitial cystitis, that is common in fibro and vulvodynia patients. It seems like once I started getting the fibro and IC under control, the vulvodynia improved. I still have flares of all 3, but I use everything in my arsenal to keep it under control.
Do you have any bladder problems, frequent urination, pain, or the feeling that your bladder is never empty? These are some common signs of IC. There are a few websites that can give you all kinds of info on both IC and vulvodynia. They seem to be really like 'sister' disorders, is what I've seen in my research.
As for what you can do.... Diet is a factor. Citrus, smoked meats, preservatives in packaged foods, cabbage, alcohol, (and lots more) can really cause vulvodynia to flare. Check out the 'IC Diet' for details. Also, I use a handmade soap that has calendula in it for washing down there, all other soaps would make me feel as if I was on fire. I bought a lot of soaps before I found something that worked for me. Some girls use baby soaps. Cetaphil is also a common one. Rinse WELL. After any type of sex or stimulation down there, just rinse well with warm water. For awhile I thought I was allergic to my husbands semen. lol. I also use an ice pack after sex. (I tell him that he's so hot that I need to cool down-lol) As for the other problems with your husband, I don't know, but the year we dealt with this was one of the hardest things we've ever been through in our entire lives.
I have a bunch of info, I'd be happy to share it with you.
Jen

Anyone else? We can't be the only ones~

Yup. It's not pain, it's no desire. My gyno said it sometimes happens "as we get older". It's not been going on since before the FM.

Are you the original poster?

Thanks Jen, I will get a hold of my gyno and see if she can do anything to help. It has been a very difficult 3 years. Now my husband doesn't even want to touch me and if he does he appoogises for "pawing" me.
I do appreciate all your information.

I feel your pain. My doc prescribed lidocaine to numb the area, and that's how we slowly started being able to be intimate again. It's terrible, and I wish you the best of luck.

An_242862, thank you for bravely asking about a difficult topic in a public forum. I am so glad you did. Many have difficulty even approaching their personal clinician about it as well but it is important to do so. The most direct answer to your dilemma is to not assume this is related to fibromyalgia. It could be vulvodynia or even estrogen related atrophy (menopause) but should be addressed by your gynecologist. It is true that many conditions such as irritable bowel, burning tongue, interstitial cystitis, vulvodynia (search WebMD for more information) find their way to co-exist with fibromyalgia, a more generalized body pain syndrome. It is unknown if the development of more widespread pain (fibromyalgia) is a response of the nervous system to persistent pain from these unusual pain syndromes or if the process helps to tip a vulnerable area such as the vagina into becoming more sensitive. We just don't know yet.

I appreciate that the subject of intimacy between couples can be a source of confusion, hurt and silence. I urge you and your husband to continue to talk about what you both are experiencing and come to some understanding and agreement about how you might satisfy one another, both sexually and non-sexually. There are treatments for ED and vaginal pain and before these symptoms become more problematic in the relationship seek guidance so that you will have an accurate diagnosis and know your options. Best, Dr. Margaret

I hope your Dr. can help you, but I have yet to meet one that knows much about it. I got the "it's in your head" crap, and my own gyno told me just last week that she's glad I learned to help myself with this condition, because she could not have helped me.