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pellegrino

Vulvodynia And Celiac Disease

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WOW, I LOVE this forum! I have had Vulvodynia for a long, long, uuugghhh, long time. Dr's told me that I would have it for the rest of my life and there were no treatments for it. Now, I know for a fact there is, for me anyway. I have been gluten free for a little over a year now and I started seeing a difference in about 6 months. There is hope! Just keep to the diet and hopefully you will start seeing a difference.

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I would not agree that vulvodynia is a BS diagnosis. Is it used as a dx when a dr can't find anything else wrong, but didn't look for everything? Sure. That doesn't mean it doesn't exist for anyone. Is there an "underlying cause"? Sure. But for at least some people, it's what it is, like saying "you have a cold" and sometimes you really DO have a cold virus, sometimes you don't.

I was dx'ed in 2000, about 9 months before my wedding. It took a little while to get diagnosed, but like with celiac, I never had years of wandering around to doctors with anyone saying it was in my head. I saw a specialist (who was a two hour drive away, until I moved to the other end of the coast, and then was a three hour plane ride away, but I still saw him until my pregnancy). As best I can tell from what I've researched and learned from him, not only are there different subtypes of vulvodynia (which, yes, is a symptom based term, so in that sense it's a catch-all), but sometimes subtypes of the subtypes. For instance, I have vulvar vestibulitis, which is not the only type of vulvodynia, and it seems to have different causes (and no, they're not well understood yet, but you have to describe something that exists even if you don't yet understand it). He noted that some women are helped by a combination of physical therapy, antihistamines, and topical estrogen (which is what worked for me, but it can take a LONG time - for me, I saw improvement after nine months of continued, steady work), some see results from a low oxalate diet (or other dietary change), some from surgery, and some from tricyclics or other approaches. Until they better understand what the different causes are, it is a bit of a shot in the dark, but there are consistent histological signs in women with this "bs diagnosis" that suggest that, while it's not understood, it's also not necessarily a bs diagnosis, even if it is too liberally used without properly ruling out other things. (For reference, the low oxalate diet and the gluten free diet didn't do a single thing for my symptoms.)

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I have been diagnosed with Provoked Vestibulodynia and am looking for a doctor who specializes in vaginal pain. Emily, did you ever get a name? I would REALLY appreciate any recommendations for vaginal pain specialists in San Diego.

(As a side note in reference to the original post, I also believe I have a gluten intolerance (not celiac, per se) discovered while searching for a cure for chronic tailbone pain.)

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

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What kind of specialist did you see that led you to the combination of physical therapy, antihistamines, and topical estrogen? I have been diagnosed with provoked vestibulodynia and am looking for options outside of surgery and would like to speak to a specialist in my area (San Diego). I don't know how to go about finding and would appreciate any recommendations. Thanks!

I would not agree that vulvodynia is a BS diagnosis. Is it used as a dx when a dr can't find anything else wrong, but didn't look for everything? Sure. That doesn't mean it doesn't exist for anyone. Is there an "underlying cause"? Sure. But for at least some people, it's what it is, like saying "you have a cold" and sometimes you really DO have a cold virus, sometimes you don't.

I was dx'ed in 2000, about 9 months before my wedding. It took a little while to get diagnosed, but like with celiac, I never had years of wandering around to doctors with anyone saying it was in my head. I saw a specialist (who was a two hour drive away, until I moved to the other end of the coast, and then was a three hour plane ride away, but I still saw him until my pregnancy). As best I can tell from what I've researched and learned from him, not only are there different subtypes of vulvodynia (which, yes, is a symptom based term, so in that sense it's a catch-all), but sometimes subtypes of the subtypes. For instance, I have vulvar vestibulitis, which is not the only type of vulvodynia, and it seems to have different causes (and no, they're not well understood yet, but you have to describe something that exists even if you don't yet understand it). He noted that some women are helped by a combination of physical therapy, antihistamines, and topical estrogen (which is what worked for me, but it can take a LONG time - for me, I saw improvement after nine months of continued, steady work), some see results from a low oxalate diet (or other dietary change), some from surgery, and some from tricyclics or other approaches. Until they better understand what the different causes are, it is a bit of a shot in the dark, but there are consistent histological signs in women with this "bs diagnosis" that suggest that, while it's not understood, it's also not necessarily a bs diagnosis, even if it is too liberally used without properly ruling out other things. (For reference, the low oxalate diet and the gluten free diet didn't do a single thing for my symptoms.)

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What kind of specialist did you see that led you to the combination of physical therapy, antihistamines, and topical estrogen? I have been diagnosed with provoked vestibulodynia and am looking for options outside of surgery and would like to speak to a specialist in my area (San Diego). I don't know how to go about finding and would appreciate any recommendations. Thanks!

Dr. John Willems at the Scripps Clinic in La Jolla is one of the top doctors in vulvar disorders in the country. (Not quite as well known as the ones on the east coast, but he's been treating and researching on it for years.) It (as of seven years ago) took about six months to get in to see him, but is absolutely worth the wait.

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this is great thread!

does anyone have a gyno recommendation for the Washington DC area?

I don't think I have VV, but I've got something. I haven't had sex in awhile so I don't know if that unbelievable pain is still there but based on my last pelvic exam the pain had lessened. But I still have a persistent fissure and mild yeast like itching. These symptoms have been constant for about 5 years --- been treated for yeast and bacteria multiple times and seen 5 gynecologists. None of them figured anything out. And I still don't know what is going on.

Not to be too graphic but is there a way for me figure out if the vaginal pain is still there without having sex?

Also, is there any chance that corn chips aggravate these symptoms? I ask because I have an addictive relationship with the chips..a sure clue that they are bad for me!

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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.

I was diagnosed 6 years ago with Vestibulitis! Wow! It's amazing how things connect with Celiac. I avoid riding bikes, scented soaps and I always try to use a cushion on hard chairs or benches. I have to limit my time swimming also. Right now I can't wear jeans because of my side pain. I can't stand to have the pressure on them.

I was having migraines really bad for 13 years, and they have now stopped after going gluten-free.

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I know this hasn't been active lately but I was wondering if anyone has problems using tampons. I've never been able to use them as they cause a lot of pain and burning. I was wondering if this was due to the vulvodynia?

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I had itching in the vulva and vagina for years before I was diag. with Celiac Sprue. The undiagnosed celiac caused leaking from the anus, fecal incontence, which was annoying but usually not very noticable. Besides the itching I would get repeated bladder infections after intercourse, the fecal bacteria were pushed up into my urethra. Other celiacs have mentioned this problem. It has cleared up on the gluten-free diet. I also had endometriosis and uncomfortable intercourse but was able to find a lubricant wich helped and stopped the bladder infections. I would think that you might try disinfecting the anal and vulvular area before and after intercourse. A 10% solution of ethanol or 100 proof vodka would do this. Some people use diluted human safe Iodine solution (made with water instead of denatured alcohol).

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100 proof vodka would do this.

Ouch! :blink::P

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Vulvodynia has been researched enough to know that it is NOT caused by an infectious agent. Given the changes generally present in the vulvar tissue in those with the condition, alcohol, which is drying, would likely be quite painful and make things worse.

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Researching kidney stones today (DH has them :( ), I was reminded that hyperoxaluria -excess oxalate in the urine - is a cause or aggravating factor in some cases of vulvodynia as well as kidney stones. And research shows that hyperoxaluria is common in people with intestinal disorders, and is related to malabsorption of fats and calcium. So that could be the explanation for people who have both celiac and vulvodynia. If so, in theory the vulvodynia should clear up as the gut heals. In the meantime the accepted treatment of hyperoxaluria (supplement with calcium citrate and avoid oxalates in the diet) ought to be helpful.

In fact, I have had only one mild flare of the vulvodynia since going gluten-free. Hoping maybe it is a thing of the past - I still take calcium citrate and do my PT exercises faithfully, though.

I realize this is not a cure-all; vulvodynia seems to have a number of different causes, and sometimes there is continuing nerve-involvement not matter how it started. And this doesn't explain why I always found antihistamines really helpful during a flare while many sufferers do not. But I thought the connection was interesting, and not enough noted by the medical community.

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I've been doing research on fibromyalgia lately and I'm still in the middle of reading the book "What your doctor may not tell you about fibromyalgia" and I've been really surprised how much it mentions most of the problems mentioned here as symptoms of the fibro :unsure: . It says that the vulvodynia can be one symptom of the fibro and tons of women have both. So is incredible fatigue, nerve problems, and other stuff that has been mentioned here. I think, it never hurts to read related books about whatever we are suffering from. At worst it gives us a broader horizon about what's going on and at best it helps us to "heal" ourselves. By the way, I have unreal pain with intercourse, too, and my guess is I suffer from vv as well, together with the incredible fatigue, numb lims and nerve problems and the celiac.

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Not much to add, but I also was diagnosed with VV 4 years ago and then went on to find I had celiac in March 2011. I had the surgery and it was totally worth it! I actually felt a new spot forming a few months before finding out I had celiac and the pain has completely gone away after being gluten-free.

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yeah, I was just diagnosed with a herniated disc after a month of miserable lower back pain and sciatica down both legs. got an epidural yesterday and the pain finally seems to be diminishing. But I worry about getting future back incidents.

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