Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Vulvodynia Anyone?
0

12 posts in this topic

Ok Ladies,

I was diagnosed with celiac in August 09. September I had a large fibroid removed from my uterus. My doctor thinks surgery may have tipped off the vulvodynia. In some ways, I've had vulvodynia-like symptoms for about a decade but it for sure got worse once I went gluten-free and had surgery.

Since the oh so fun symptoms started I have eliminated a lot of foods from my diet and nothing has gotten better. I started taking imipramine about 1.5 months ago and haven't seen any improvements. Granted I wasn't at 40-50mg for that long but nothing good has happened.

At my recent doc appt I asked if there was anything else I could be doing, should be doing, someone I could talk to, etc. and she said, "Nope, I think you've got it all covered"...hmmmm....so I started looking online for more info and found the low-oxalate diet.

Has anyone tried this? I don't know what to eat. I feel like every list I find is different which is what happened with the interstitial cystitis diet.

Does anyone have a good, trustworthy link? I have no idea what I'm doing but I'm determined to figure something out! I am so stinking hungry it's driving me nuts. Any help would be appreciated :)

0

Share this post


Link to post
Share on other sites


Ads by Google:

More to share...

I finally tried white rice and it seems to be ok. Brown rice was a big NO but white seems to be better. How interesting!

But I have a different question.

For those with vulvodynia...and those with other food weirdness, how fast do you know you've eaten something bad or wrong? How quickly do you react? Depending on the food/issue, I react to vulvodynia foods almost immediately. I talked with my favorite physical therapist today and she thought that very was weird. She didn't say she didn't believe me and she didn't look at me like I was crazy (which is why I love her) BUT she thought it was strange because "the food hasn't even reached the stomach yet". She wondered how that was possible. Does anyone else have a super fast reaction to food?

0

Share this post


Link to post
Share on other sites

My friend has this. She has showed me the recommended diet for it. But she hasn't tried it. Reason being she has food allergies and if she eliminated all the other foods on top of what she already can't eat, her diet would be extremely limited. She is supposed to have some sort of surgery to help, but I don't know the particulars on that.

0

Share this post


Link to post
Share on other sites

I have this condition (was diagnosed in 1997) and definitely have a problem with foods high in oxalic acid. For me, when I pee it burns really bad, and often I burn for hours afterwards. It also causes a lot of external itching and irritation.

0

Share this post


Link to post
Share on other sites

Oh my gosh, I am sooo glad there are ladies talking about this!!! Help is WELCOME!

I started getting infections "down there" very very shortly after I had a major blow-up of Celiac Disease in 2009. I was in the ER for dehydration and a mess of other problems that we now know where celiac disease-related, and then a day or two later I was back because of an infection down there that had become so large and PAINFUL that they had to lance and drain it, then stuff it with gauze. :o Oh my gosh I nearly died of pain!

Anyways, since that time in 2009 I've had these infections recur. Because I haven't had any health insurance or Medicaid or anything like that, I wasn't able to see a GYN about it. I took antibiotics (which usually makes my gut problems worse) when it wouldn't get better and I was afraid of ending up in the ER again.

So I just got Medicaid and the 1st doctor appointment I made was for the GYN. I saw him on Monday and he was very nice and sympathetic but didn't have any answers for me. :unsure: Prescribed more antibiotics and some diflucan (sp?) to kill the yeast in my whole system (after the antibiotics lead to another wicked killer yeast infection). Guess I should mention that I never had a yeast infection prior to the Celiac Disease full-blown attack in 2009. But now they are common and difficult to treat with (messy) ointments and such. :(

From my personal experience and the timeline in how everything has happened between vaginal problems and Celiac Disease, I'd not be the least bit surprised to find out that they could be directly related. On the other hand, my problems with yeast infections are timed about the same and I do wonder if (based on other research I've been reading) yeast could cause the Celiac reaction which then causes the vaginal problems.

Read here to catch my drift :) :

Thanks for being willing to write about this. B) I'm feeling somewhat relieved not to be alone. It's such a personal thing so not like you just talk about it easily. :ph34r: There are no "significant others" in my life and I'm a virgin, but even the thought of a honeymoon makes me cringe. :blink: Oy! Anyways, suggestions are appreciated! Thank you, Ladies!!

http://www.uihealthcare.com/depts/med/obgyn/patedu/vulvarvaginaldisease/vestibulitis.html

0

Share this post


Link to post
Share on other sites




I'm so glad this is up!!!

My Celiac symptoms have only been severe since about December 2009. It was over my Christmas break at home that I tried a new bath soak and it started an infection. Since then, any gluten is completely intolerable, and the infections return within a week of starting the medications for them. I read the link you posted and I'm wondering if this could be related, and if there is a way to find out.

I am returning to gluten starting in July to have an upper endoscopy in August because even after the diet change, I'm barely feeling 50%. Will this, or the biopsy included, show a Candida infection?

Any advise or links would be greatly appreciated.

0

Share this post


Link to post
Share on other sites

I've had problems with chronic yeast infections since I was 13 years old. In some cases, I would have infections for months without being able to get rid of them. It was hell. I'm wondering if that's one thing that caused me to get vulvodynia. I'm assuming the constant yeast infections can be another symptom of celiac disease?

0

Share this post


Link to post
Share on other sites

I have IC issues and Vulvodynia issues. The vulvodynia issues magically started going away over the last year or so. Not sure why other than I started supplementing with Vitamin D. After so many years of torture I hardly let my mind even wonder why I just say thank you to fate. The gluten-free attempt I'm making now SEEMS to be helping my bladder. Today I left the house to do one errand and decided, spur of the moment to get on the highway and go 40 minutes to Whole Foods, not sure where I might find a bathroom. That is UNHEARD of for me. So I def think Gluten issues affect the bladder and there is no doubt in my mind they can affect Vulvodynia, joints, etc. I can't prove it of course but I sure wouldn't doubt it. I intend to stay gluten-free forever. It's hard but just being able to have the freedom to get on that highway without the urgent bladder feeling was something I would never trade for the old comfort foods I loved.

0

Share this post


Link to post
Share on other sites

I posted this article awhile ago, but I thought it was worth posting again as it is related to this topic (see below). I tried the low-oxalate diet with some success; however, after reading this article it make me think about when I had a lot of flair ups and they were almost always gluten related...I always thought it was because I cheated and ate something high-oxalate (i.e. campbells tomato soup). Today, I can eat gluten free tomato soup without a vulvo flare-up...for me the gluten was the problem not the tomato. If only I had learned this 10-15 years ago...I could have avoided all those ob/gyn appts. I have not had a flare-up in months and the only time I have any problems is when I eat something that should have been gluten free and wasn

0

Share this post


Link to post
Share on other sites

Wow, that is interesting (the article). I figured there was some connection between vulvodynia and Celiac. I also really think there must be a link between celiac disease and chronic vaginal yeast infections/candida.

0

Share this post


Link to post
Share on other sites

Hi Everyone,

I found this forum while reading the low-oxalate website and have found it extremely helpful.

I was recently diagnosed with Vulvodynia/Vestibulitis and have been reading everything I can get my hands to learn more about what's wrong with me. When this started about a year ago my Gyno told me nothing was wrong with me. Since then, my internist has helped me identify the problem, but I do not know of a "specialist" to go to and see to find out more. The doctor that my internist referred me to received AWFUL reviews online, so I was nervous about going. I decided to try another gyno in hopes that they would know more than my old one, but my *new* gyno told me there was no such thing as a Vulvodynia specialist. She does, however, "believe" that I am suffering and prescribed biofeedback PT, but other than that she didn't seemed too interested in helping me.

I live in NYC and from what I have been reading online it seems that there are indeed specialists in this area, however I don't know which one to contact. Does anyone on this forum have any suggestions on doctors in the NYC area that specialize in Vulvodynia, etc AND/OR physical therapists for biofeedback therapy? I am at a loss and my current doctor is not helping me with my search to find a specialist.

Thank you very much in advance. All of your comments have been very useful and I plan to begin the lo-oxalate diet ASAP, as well as trying other remedies suggested.

Thank you!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,906
    • Total Posts
      919,579
  • Topics

  • Posts

    • Looking For A Family In The Houston Metro Area
      Hello again!! I am now looking for TWO families in the state of TX who know about the celiac disease. We have two students from Europe and we have to find a host family for each student, the host family has to know what a celiac disease is about and be willing to host a student and give them support and guidance for 10 months. Thank you guys!! For more info, you can email me at hdoyle@icesusa.org
    • Kidney disease question
      GFR ranges are very strange.  We went through this with my husband.  Did you notice in Icelandgirl's link that there is no range that is considered good and normal?  I just had mine tested and the report said that normal was > 60.  As your report says, your value is only a problem if there is other evidence of kidney damage.
    • Kidney disease question
      Hi Matt I'd love answers to this one too. My own levels have varied since I have been monitored, over the last three or so years.   I asked my GP about this and I seem to recall she said to me that levels of hydration affect this number.  i.e. when my figures were in the 90s it was because I was super-hydrated. When my numbers were in the 70s she wasn't worried, either! I'm hoping someone with a better knowledge of these matters will chime in but the last time I was tested my gastroenterologist was very pleased with my kidney and liver function numbers - so it seems to me that when my own numbers were in the 70s on a couple of occasions I must have been  less well hydrated when I had the test those times? And that these numbers are therefore subject to variation.     
    • New to this gluten-free life
      Kareng is correct.  There are also a number of good reference books on celiacs and gluten free issues.  Also several magazines.  The main thing is to find out the hidden and unusual sources of gluten, and also to be very careful when eating at restaurants.  I got glutened quite a few times at restaurants before I learned to triple check and began to find safe places.  Good luck. 
    • Kidney disease question
      Hi Matt, Since celiac impacts the whole body...I think kidneys are affected.  I have kidney stones and they are super fun(not) and my urologist says that it's fairly common with celiac and malabsorption.  I don't know specifically about kidney disease, but when I was in the hospital passing my stones...prior to passing, my GFR was around 60.  A few weeks later when my doctor did bloodwork it was 87.  Here is some info that may help.   https://www.kidney.org/atoz/content/gfr
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      60,954
    • Most Online
      1,763

    Newest Member
    Olivia
    Joined