For those with vulvar vestibulitis

Discussion in 'Fibromyalgia Main Forum' started by klutzo, Nov 9, 2002.

  1. klutzo

    klutzo New Member

    I have some good news which may help some of you who suffer from one of the concommittant conditions with FMS, that painful and seemingly intractable vulvar vestibulitis.
    I have been on a diet that allows NO high carbohydrate foods for six weeks now. On a hunch last night, I checked my vulvar vestibulitis to see if by any chance it had improved. (There is a theory that yeast overgrowth may contribute to at least some cases of this). Lo and behold, for the first time in 12 yrs., my vulvar vestibulitis was gone! No trace of it, no pain, nada, zilch. I'm sure some of you have had your sex lives ruined by this, so a trial of eating no high glycemic index foods might help you.

    For those who don't know which foods to avoid, here's a list: NO sugar (any ingredient that ends in "ose"), jams, juices, potatoes, rice, pasta, bread, carrots, corn or beets.

    Unfortunately, I also found out that my cystocele is a lot worse,and I was up most of the night with pain from my little investigation. I'll have to go see the gynecologist and have him try to talk me into surgery again (no way). It still hurts today.

    Hope this info helps someone.
    Klutzo
  2. klutzo

    klutzo New Member

    I have some good news which may help some of you who suffer from one of the concommittant conditions with FMS, that painful and seemingly intractable vulvar vestibulitis.
    I have been on a diet that allows NO high carbohydrate foods for six weeks now. On a hunch last night, I checked my vulvar vestibulitis to see if by any chance it had improved. (There is a theory that yeast overgrowth may contribute to at least some cases of this). Lo and behold, for the first time in 12 yrs., my vulvar vestibulitis was gone! No trace of it, no pain, nada, zilch. I'm sure some of you have had your sex lives ruined by this, so a trial of eating no high glycemic index foods might help you.

    For those who don't know which foods to avoid, here's a list: NO sugar (any ingredient that ends in "ose"), jams, juices, potatoes, rice, pasta, bread, carrots, corn or beets.

    Unfortunately, I also found out that my cystocele is a lot worse,and I was up most of the night with pain from my little investigation. I'll have to go see the gynecologist and have him try to talk me into surgery again (no way). It still hurts today.

    Hope this info helps someone.
    Klutzo
  3. mfigue

    mfigue New Member

    Hi Klutzo,

    Thanks soooo much for the info I was up most of the night myself doing a little digging on the subject. So does this mean we can't eat any good stuff anymore...
    Something you might be able to clear up for me is; does this come with FM or CFS I thought I read somewhere it is a symptom of CFS. I have FM but have been suffering with this also and now I'm just alittle confused. I go to so many Dr's that I forget which Dr. is treating me for what. I guess I will have to start writing all of my questions. Because as you know we (I) forget everthing. I have always been a healthly woman and now I feel like I'm falling apart. Sorry to vent on you, but it's nice to know there are others with the same DD as me, not too many people understand how we cope day in and day out.

    Again Thanks for the Info.
    Today will have to be a Very Soft Hug!
    I'm having a bad One Today
    God Bless!!!!!
    MLF
    [This Message was Edited on 11/10/2002]
  4. klutzo

    klutzo New Member

    A few years ago, vulvar vestibulitis and vulvodynia were declared to be concommittant conditions with FMS. I don't know about CFS. I fit the diagnostic criteria for CFS, but have never been officially dx'd with it. I have read many posts here where people with CFS complain about yeast overgrowth, so it would make sense.
    I share your dismay about going without carbs, but I can offer you some solace. I had tried just going without sugar before and it was harder than he**! Going without ALL foods that quickly turn to sugar is actually much easier, at least for me. It eliminates the insulin roller coaster and you don't get such bad cravings. I've also found I can cheat just a bit for special times and then go right back on it. For example, on our wedding anniversary, I had 3 bites of a dessert called "chocolate sin"...yummy. Before this diet, I could not have stopped with 3 bites, but now I can. I guess it depends on which you want more.....to eat carbos or have sex without horrible pain! What a choice!
    For me it's a life and death matter of getting my lipids and weight under control, so there's no contest.
    Klutzo
  5. BonnieQ

    BonnieQ Member

    I never have heard of carbs being part of the problem of vulvadynia but it makes alot of sense. I was bothered horrible with it for awhile and found avoiding tomato products vinegary , and spicy foods helped. Also mine mostly was external so I found an over the counter cream called acid mantle that helped tremendously over time. A dermatologist recommended it, sometimes you have to ask the pharmacist for it. It in inexpensive and a tube of it lasts a long time as you just need a very little bit.
    Forgot to add also I have read that this can be an unpleasant part of fibromyalgia some drs. believe. I pray I never am bothered by this again as it is horrible.
    [This Message was Edited on 11/10/2002]
  6. klutzo

    klutzo New Member

    I'm so glad you found something that helped you. Vinegar does feed yeasts, but the tomato problem sounds more like an acid imbalance.
    I've never heard of acid mantle. How does it work? Is it supposed to balance your PH? Is it cream that you put directly on the red, sore areas? Does it burn?
    My problem is external too. I was not aware that you could have this inside, as your vulva is outside, so if it were inside it would be called something else. Did that make sense?
    The specialist that did a deep tissue scraping and found I had "mutated yeasts deep down in there" told me that this problem has different causes in different people. One of the most common is HPV (human papilloma virus), the virus that causes Condylomata (genital warts). He assumed at first that was my problem, and gave me a steroid cream, which made it a lot worse, since yeasts love steroids. That's when he decided he'd better do a deep tissue scraping.
    I would suggest that anyone who can't get to the bottom of this ask their GYN to do a deep tissue scraping. It doesn't hurt at all compared to the pain from the VV and you may just find out how to fix it.
    Hugs,
    Klutzo
  7. mfigue

    mfigue New Member

    Thanks for the reply. It does make sense about eating carbos or having sex. (Sex)what is that! I have always eaten healthy but lately all I want is sweets and salt. I tell my husband all the time if he thinks I'm pregnant. We look at each other and shake our heads at the same. This causes a smile because I can't remember the last time that I laughed. Thank God for an understanting husband.

    God Bless, Soft Hugs Again
    MLF
    [This Message was Edited on 11/10/2002]
  8. BonnieQ

    BonnieQ Member

    Yes acid mantle is a cream that you use very little of after urinating. It was such a life saver for me. There were days that I could hardly stand the burning pain, I thought I would lose my mind. Nothing helped until I used this. Also taking calcium tablets. There is a Dr. that does research on this problem , you can read more about him by contacting the Vulvadynia foundation. I pray this never comes back again for me or anyone. I met a lady that actually had some glands removed in order to help this problem which didnt help. I am sure there are alot of horror stories out there. But long story short, this vulvadynia is somehow related to fibromyalgia is there thought. I believe Mikie if I remember correctly has mentioned in the past that her daughter was bothered by this problem also. Thankfully the gyn drs. have now found this to be a real problem, when I originally got it, they made me look like I was making it up. No one had heard of it and I was told to Learn to live with it! Yeah right!
    BonnieQ