VULVODYNIA and IC along with fibro? HELP!

Discussion in 'Fibromyalgia Main Forum' started by fibrobutterfly, May 15, 2006.

  1. I was wondering, if there is anything you use for vulvodynia that helps? Fibro, vulvodynia, and IC seem to go hand in hand along with alot of other IBS etc.

    I have looked in search and saw many have vulvodynia but don't really see anything that was helping people.

    I am trying acid mantle cream that a dermatologist told me about a long time ago that helped using it very sparingly. Also restarting my calcium citrate that also helped . This is a horrid thing to have to deal with. Any suggestions would be greatly appreciated.

    forgot to add, personally I think it related to yeast somehow.? who knows tho'.
    [This Message was Edited on 05/15/2006]
  2. Strawberry94

    Strawberry94 New Member

    The low oxalate diet is supposed to really help with the VV. For myself, following the IC diet and using calcium carbobnate and antihistamines has made a big difference.

    Also using detergent free soap to clean my underwear, rinising them twice (at least) and using nonsoap cleansers in my bath has helped so much. I used to be in constant agnony with the VV type symptom and these were the things that helped the most.

  3. mollystwin

    mollystwin New Member

    My sister was diagnosed with vulvodynia last summer after a huge reaction to her yeast infection medication. She started going to FFC in February and found out she has lyme disease. After several months of lyme treatment her vulvodynia symptoms are 90% gone. She researched this and discovered that genital pain can be a symptom of lyme.
    Just a thought.
    She did many of the things mentioned in this thread like cotton underwear (or no underwear at all) rinsing twice, she used natural tampons and pads etc.
    Good Luck to you.
  4. libra55

    libra55 New Member

    I use unscented laundry detergent (like All Free and Clear, Seventh Generation, or Bi-O-Kleen) and NO fabric softener at all. If I use any of that it feel like someone lit a match down there.

    My dr. also says no soap down there. If I want to feel a little bit fresher I have used Summer's Eve Feminine Wash (not douche) it makes a little lather and is very gentle.

    I try and drink a lot of water so my urine is not so concentrated.

    I have a hard time tolerating tampons too.

    Sex, well we wont go there.

    Michelle
  5. TaniaF

    TaniaF Member

    I'm at menopause so vaginal dryness adds to the already pain and irritation of VV. I do not take hormone replacement by mouth but use a small amount of Estrace estrogen cream in the vulvar area.

    It has helped a bit. I find I get a flare up when I'm under stress (and when are we not under stress with FM?).

    I follow the IC diet and do the same with laundry as the girls mentioned above.

    I take both calciums (citrate and carbonate) so not sure which one helps me the most.

    Hang in there,
    tania
  6. suz9601

    suz9601 Member

    Vulvodynia was my first symptom at age 18. I am not 28 and have about 10 other syndromes or conditions. I have done everything for VV, even had a vestibulectomy and not much has helped. Some days are better than others, but it always burns like heck or aches. I'm sorry you have to deal w/this. I know how painful it can be.
  7. Mikie

    Mikie Moderator

    Who is knowledgeable of these conditions. There are some things which can be done. My daughter has both of these conditions. We are more prone to them. There are things which can be done but most docs don't know how to properly treat these conditions. Good luck.

    Love, Mikie
  8. Strawberry94

    Strawberry94 New Member

    If you haven't already, please check out the Vulvar Pain Foundation website. There is a lot of good information there.
  9. kalina

    kalina New Member

    That is the name of a medication that helped me a lot. It's specifically for treating IC. They really don't know HOW it works, but It seems to repair damaged, thin tissue. Elmiron is fairly expensive, but you only take it for 3-6 months and then you can stop it for good. Very few side effects.

    Before treatment, I had constant UTI symptoms and vulvodynia. Now I have a UTI maybe once a year (if that), and the vulvodynia is about 60-70% improved.

    I'm pretty happy with the results.

    Kalina
  10. TXFMmom

    TXFMmom New Member

    Honey, I feel for you.

    My sister was diagnosed with vulvadynia and they are just about as good at treating it as FM.

    She does have success with very high quality cotton panties, triple rinsed. No jeans or tight pants, keep the yeast under control, and no tomatoes, broccoli, etc.

    I surely hope you feel better.
  11. Mikie what does your daughter do to relieve this and how is she doing?
    I guess its time to call the dr. yet again.
  12. libra55

    libra55 New Member

    I also go without undies a lot when I am home I just put on a nightgown or long shirt and "go commando". Every little bit helps.

    M.