[pellegrino]

Has anyone noticed a connection between vulvodynia and celiac disease?

I was diagnosed with vulvodynia two years ago. My gynecologist, who specializes in vulvodynia, sent me to physical therapy, which I did once a week for six months - it helped a great deal. My physical therapist suggested going off birth control, and the imipramine I was taking for the vulvodynia. Doing so also improved the condition.

Two weeks ago I was officially diagnosed with celiac disease through an endoscopy. I've only been gluten free for a week, but it seems that maybe the vulvodynia is improving. I don't feel as much stinging and burning on a daily basis as I normally do. I'm wondering if there's a connection. Seems like it might make sense.

I just read "Celiac Disease: A Hidden Epidemic" by Peter Green. While he mentions connections between celiac disease and all sorts of medical conditions, vulvodynia isn't specifically mentioned. I have yet to read "Dangerous Grains" - I wonder if a connection is mentioned there.

I'm just wondering if there are any other women out there who had vulvodynia and noticed the condition improving or disappearing on a gluten free diet. Wow, I'd love it if it disappeared, but I'm not getting my hopes up.

[angelbender]

Hi! I've never had V but I DO have Fibromyalgia and have seen a big connection between those two. If you're into reading, check out the following book: What Your Doctor May Not Tell You About Fibromyalgia by Dr. R. Paul St. Amand and Claudia Marek. Your local library will probably have it or you can browse it at Borders or Barnes and Noble. I have Fibro bad but I am so grateful that I don't have V too.....I've heard how nuts it can drive some people. Good luck! Angel

[jmengert]

I have vulvodynia, too, actually a type that is called vestibulitis. I was diagnosed with that before I was diagnosed with celiac disease. Unfortunately, I haven't noticed much symptom relief since going gluten-free, which I had hoped would be the case. I've always wondered if there is a connection with these two diseases, and because they are both auto-immune diseases, I'm sure there is.

I'd love to know if you learn any more about this connection. I've had pretty consistent symptoms of the vestibulitis since I was diagnosed with it five years ago and would like to find out more. My doctor had some suggestions that were mostly surgical and I was very against, so I'm all for learning about more natural approaches to dealing with this.

[tarnalberry]

I was diagnosed with vulvar vestibulitis about seven years ago (about a year before my wedding). It is what led me to finding out I was gluten intolerant, actually, as someone on a VVS forum swore up and down that the latter causes the former. I didn't believe her, tried the diet, and while I didn't see my VVS symptoms change much, I noticed a change in other things that I had never thought were abnormal.

The doctor I see in San Diego, who is well known in VVS/vulvodynia circles, has noted that many of his patients have gastrointestinal issues, and a celiac diagnosis (suspected, really, I didn't have a biopsy) didn't surprise him at all. There does appear to be a genetic component to VVS/vulvodynia.

I'm probably 90-95% improved in my VVS symptoms through a combination of topical estrogen, anticholinergenic antihistamines, and physical therapy with biofeedback. My doctor's theory on my particular subtype of VVS is that an overload of histamine in the vulvar tissues causes pain itself (burning, particularly), as well as degrades the collagen in the skin, thinning it, bringing the nerves closer to the surface and making it more prone to tearing, and causing more histamine release when it's subjected to tactile pressure - which causes a lovely reinforcing loop.

Besides the above, a few other things that my doctor and I figured out was that seeing a sex therapist was helpful - chronic pain conditions can affect basic drives and extend beyond pure physical effects, but create feedback loops that worse physical effects. (Resting tension levels of the pelvic floor muscles, for instance, are prone to physical/psychological interplay - and I'm not even talking about vaginismus here.) Also, just having sex more often keeps the pain in check - for partly physical reasons in chemical reaction and effect on tissue.

I did have to not wear pants (skirts only) for over two years and still can't wear jeans. I also can't sit a regular bicycle (recumbent only). But it's still *vast* improvement over the constant pain, inability to sit for extended periods, and feelings of never ever being able to be "normal" again.

[lcbannon]

I have been dealing with VV for over 6 years. I was just talking with hubby the other day, we have both noticed everything "down there" seems to be better now. I have been gluten-free for about 2 months now. No it is not 100% great now but at least not always "closed for repairs" lol

[Julie R]

I have vulvodynia, Fibro, had/have severe endometriosis (hysterectomy in 01 relieved most). Then also a bladder disease I noticed that was not mentioned called interstitial cystitis ( theory is it is also allergy and autoimmune related).
Since DX allergies and gluten intolerance much improved in all of the above! It was a never ending cycle of each aggravating another. Recently I have not been so strict and sure enough it all comes back.
I found this message board after looking for more resources to stay on the no gluten wagon! I fell victim to poor me I want this or that and now I keep relapsing into major poor me who is sick!

Another easy help for the vulvodynia-plain olive oil! My gyn is a specialist and it turns out I am allergic to glycerin which I was using for vestibulitis. In the rare circumstances that I flare I now use olive oil!

[tarnalberry]

 Julie R, on May 21 2007, 07:13 PM, said:

Another easy help for the vulvodynia-plain olive oil! My gyn is a specialist and it turns out I am allergic to glycerin which I was using for vestibulitis. In the rare circumstances that I flare I now use olive oil!

Another common irritant - besides the spermicide nonoxyl-9 - is propylene glycol, when used topically, and it's in most lubricants, something most of us use (or should use). I can deal with it in small quantities, but have to be careful of it.

(I should have noted that I too had to go off the pill to get improvement, and take testosterone, as my levels were undetectable.)

[Julie R]

I was always bothered by that when I had to use it also. Most lubricants have glycerin and some sting me. If I ever get over my exhaustion from docs I will go get a check up and ask if olive oil can just be a lubricant!
Side note used to spend every week at one doc or another for many years and last few avoid them as much as possible other than allergist/chiropractor!

[pellegrino]

Wow, thanks for all the responses.

Sounds like some with vulvodynia or vestibulitis improve on the gluten free diet, and some don't. I guess I'll just have to wait and see. Mine isn't so bad that I can't wear jeans, although it was before I went through physical therapy. And it's not really something that prevents me from sitting for long periods of time - I don't often find myself sitting at work thinking "wow, this really hurts." So maybe I'm lucky in that respect.

I've actually never had intercourse, but because of the vulvodynia, my expectations for the first time are now so low that I'm not expecting much. I just started dating someone, and I'm dreading the vulvodynia conversation. Of course I keep telling myself that if the guy wants nothing to do with me after he finds out, well then he's not the kind of guy I want to be with. But the conversation is still nerve wracking.

Julie, as far as the olive oil, yes, you can use it as a lubricant. That and vegetable oil. My physical therapist suggested both. When you think about it, they're as natural as you can get. Why subject such delicate skin to lubricants with chemicals in them, when you can use plain old oil. If you don't already own it, I hightly recommend "The V Book: A Doctor's Guide to Complete Vulvovaginal Health," by Elizabeth Stewart. My physical therapist recommended it and I find I reference it a lot. There's chapters on vulvodynia, UTI's, yeast infections, etc. etc. I believe she mentions using vegetable and olive oil as lubricants in the book too.

As far as condoms go, does anyone have any non-latex suggestions? I suspect I might have a latex allergy, and would just assume not use latex condoms. I guess I'm a bit scared about getting pregnant when I start having sex too. Since going off birth control helped the vulvodynia, I don't want to go back on it, I don't want to mess with my hormones again. I've heard diaphragms are a pain, and was thinking that when the time comes I might get an IUD. But I've since heard lots of bad stories about them.

Tarnalberry, I definitely think seeing a sex therapist is a great idea, and something I might consider in the future. I'll just have to see how things turn out.

Anyhow, wow, never revealed so much personal information in a public space. But it's great to hear stories and suggestions from others in similar situations.

[tarnalberry]

You can try polyurethane condoms - they're compatible with more types of lubricants than latex ones, too. My husband and I found that we didn't like them, and it turned out that it wasn't latex that was the problem (there are lots of other sources of latex that don't irritate me) but the N-9 that is/was on a lot of latex condoms as a spermicidal. Once we found one without N-9, it helped tremendously. I can't overstate how irritating N-9 is, so much so that it is being phased out of use.

We use a combination of condoms and FAM (fertility awareness method) now for birth control, because I didn't want anything with hormones, and the copper IUD wasn't appropriate for me (cramping issues - my doc and I decided I was far from an ideal candidate).

[wowzer]

I was never diagnosed with this. I did think that I may have DH. I had to vaginal biopsies, one came out eczema and the other spongiotic dermatitis. I went gluten free because it was a natural cure for spongiotic dermatitis. Although my symptoms were more itching, it made me realize that I'm not swollen down there anymore. I also tried all sorts of lubricants because I felt dry, which caused more irritation. Makes me wonder what I'm allergic to in them. Even plain KY was aggravating. I did go off my estradiol because they couldn't guarantee it was gluten free. I really didn't have any bad side effects, but maybe a little dryness. I'll have to try the olive or vegetable oil. Thank you for all the info.

[lcbannon]

My Gyno recomends the use of mineral oil for a lubricant and it works very well. He also gave me a scrip for lidocane. - A numbing agent that has worked wonders for those times when I am ready but the body is not.. kwim...

[SunnyDyRain]

 pellegrino, on May 22 2007, 12:46 AM, said:

Wow, thanks for all the responses.

Sounds like some with vulvodynia or vestibulitis improve on the gluten free diet, and some don't. I guess I'll just have to wait and see. Mine isn't so bad that I can't wear jeans, although it was before I went through physical therapy. And it's not really something that prevents me from sitting for long periods of time - I don't often find myself sitting at work thinking "wow, this really hurts." So maybe I'm lucky in that respect.

I've actually never had intercourse, but because of the vulvodynia, my expectations for the first time are now so low that I'm not expecting much. I just started dating someone, and I'm dreading the vulvodynia conversation. Of course I keep telling myself that if the guy wants nothing to do with me after he finds out, well then he's not the kind of guy I want to be with. But the conversation is still nerve wracking.

Julie, as far as the olive oil, yes, you can use it as a lubricant. That and vegetable oil. My physical therapist suggested both. When you think about it, they're as natural as you can get. Why subject such delicate skin to lubricants with chemicals in them, when you can use plain old oil. If you don't already own it, I hightly recommend "The V Book: A Doctor's Guide to Complete Vulvovaginal Health," by Elizabeth Stewart. My physical therapist recommended it and I find I reference it a lot. There's chapters on vulvodynia, UTI's, yeast infections, etc. etc. I believe she mentions using vegetable and olive oil as lubricants in the book too.

As far as condoms go, does anyone have any non-latex suggestions? I suspect I might have a latex allergy, and would just assume not use latex condoms. I guess I'm a bit scared about getting pregnant when I start having sex too. Since going off birth control helped the vulvodynia, I don't want to go back on it, I don't want to mess with my hormones again. I've heard diaphragms are a pain, and was thinking that when the time comes I might get an IUD. But I've since heard lots of bad stories about them.

Tarnalberry, I definitely think seeing a sex therapist is a great idea, and something I might consider in the future. I'll just have to see how things turn out.

Anyhow, wow, never revealed so much personal information in a public space. But it's great to hear stories and suggestions from others in similar situations.

Don't let IUD's scare you away. They are much safer today than they used to be! Many many women are happy and healthy with IUD's both Copper and Hormonal types.

As far as condoms go, you can use polyuratane condoms or if you are monogomous and can deal with the idea... sheepskin condoms. Sheepskin do not protect against STD's but are effective against pregnancy.

good luck!

[Emily B.]

I was just diagnosed with Vulvar Vestibulitis yesterday, although I've suspected it for 2 months (and hoped and prayed it wasn't going to be VV).
I love my Gynecologist, but am considering going to a specialist since it seems that many women with VV and Vulvodynia attribute their improvements to getting to a doc that knows the condition well!

Do you recommend the doctor you saw in San Diego? Can you give me his name?

Thank you,
Emily

 tarnalberry, on May 21 2007, 05:27 PM, said:

I was diagnosed with vulvar vestibulitis about seven years ago (about a year before my wedding). It is what led me to finding out I was gluten intolerant, actually, as someone on a VVS forum swore up and down that the latter causes the former. I didn't believe her, tried the diet, and while I didn't see my VVS symptoms change much, I noticed a change in other things that I had never thought were abnormal.

The doctor I see in San Diego, who is well known in VVS/vulvodynia circles, has noted that many of his patients have gastrointestinal issues, and a celiac diagnosis (suspected, really, I didn't have a biopsy) didn't surprise him at all. There does appear to be a genetic component to VVS/vulvodynia.

I'm probably 90-95% improved in my VVS symptoms through a combination of topical estrogen, anticholinergenic antihistamines, and physical therapy with biofeedback. My doctor's theory on my particular subtype of VVS is that an overload of histamine in the vulvar tissues causes pain itself (burning, particularly), as well as degrades the collagen in the skin, thinning it, bringing the nerves closer to the surface and making it more prone to tearing, and causing more histamine release when it's subjected to tactile pressure - which causes a lovely reinforcing loop.

Besides the above, a few other things that my doctor and I figured out was that seeing a sex therapist was helpful - chronic pain conditions can affect basic drives and extend beyond pure physical effects, but create feedback loops that worse physical effects. (Resting tension levels of the pelvic floor muscles, for instance, are prone to physical/psychological interplay - and I'm not even talking about vaginismus here.) Also, just having sex more often keeps the pain in check - for partly physical reasons in chemical reaction and effect on tissue.

I did have to not wear pants (skirts only) for over two years and still can't wear jeans. I also can't sit a regular bicycle (recumbent only). But it's still *vast* improvement over the constant pain, inability to sit for extended periods, and feelings of never ever being able to be "normal" again.

[archersdream]

Yes, I have gluten intolerance (tested through enterolab) and was first diagnosed with vulvodynia in the mid 90s. I also have interstitial cystitis and back pain and rib pain and I'm convinced these things are related. The IC doctor believe there could be a bacterial infection that is yet unidentified that could cause IC but they have not proved this and I have tested negative for everything including Lyme. I believe there is a possibility all of this could be related to diet (yeast?) but of course I can't prove that. I haven't found a way to solve the vulvodynia problem. I've tried desipramine, elavil, Lyrica, physical therapy (biofeedback) and none of it seems to help. I imagine the nerve damage is pretty extensive. But I would think the celiac could be a culprit here as it damages nerves.

Leslie

 pellegrino, on May 21 2007, 01:48 PM, said:

Has anyone noticed a connection between vulvodynia and celiac disease?

I was diagnosed with vulvodynia two years ago. My gynecologist, who specializes in vulvodynia, sent me to physical therapy, which I did once a week for six months - it helped a great deal. My physical therapist suggested going off birth control, and the imipramine I was taking for the vulvodynia. Doing so also improved the condition.

Two weeks ago I was officially diagnosed with celiac disease through an endoscopy. I've only been gluten free for a week, but it seems that maybe the vulvodynia is improving. I don't feel as much stinging and burning on a daily basis as I normally do. I'm wondering if there's a connection. Seems like it might make sense.

I just read "Celiac Disease: A Hidden Epidemic" by Peter Green. While he mentions connections between celiac disease and all sorts of medical conditions, vulvodynia isn't specifically mentioned. I have yet to read "Dangerous Grains" - I wonder if a connection is mentioned there.

I'm just wondering if there are any other women out there who had vulvodynia and noticed the condition improving or disappearing on a gluten free diet. Wow, I'd love it if it disappeared, but I'm not getting my hopes up.