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Vulvodynia Anyone?

PrincessHungry

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PrincessHungry Newbie
PrincessHungry
Posted

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 :)

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PrincessHungry Newbie
PrincessHungry
Posted
  • Author

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?

Juliebove Rising Star
Juliebove
Posted

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.

  • 2 months later...
Coolclimates Collaborator
Coolclimates
Posted

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.

Gutsy Girl Rookie
Gutsy Girl
Posted

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!!

Open Original Shared Link

Rebecca Madrid Newbie
Rebecca Madrid
Posted

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.

Coolclimates Collaborator
Coolclimates
Posted

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?

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Lily127 Rookie
Lily127
Posted

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.

frogrun Apprentice
frogrun
Posted

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

Coolclimates Collaborator
Coolclimates
Posted

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.

  • 9 months later...
nycgal Newbie
nycgal
Posted

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!

  • 3 months later...
mariateresa Newbie
mariateresa
Posted

Here are two very excellent sources of information regarding vulvodynia:

The Vulvar Pain Foundation Open Original Shared Link and the Yahoo Low Oxalate group Open Original Shared Link

I also have this condition and have just begun the low oxalate diet and calcium citrate.

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      Bitters for digestion?

      By Jess270 · Posted

      This sounds to me like histamine intolerance. Some foods have more or less histamine. processed or aged meats, fermented food like yoghurt or kimchi and bread (yeast), spinach, eggplant and mushroom are high in histamine. Other foods like tomatoes are histamine liberators, they encourage your mast cells to release histamine, which can also trigger the reactions you describe, flu like symptoms, joint pain, urinary tract irritation, rash, stomach upset, nausea, diarrhoea & fatigue. I had liver pain like you describe, as part of the intolerance is usually a sluggish liver that makes processing all the histamine difficult. There are multiple possible root causes of histamine intolerance, usually it’s a symptom of something else. In my case, leaky gut (damaged gut wall)caused by undiagnosed celiac, but for others it’s leaky gut caused by other things like dysbiosis. Some people also experience histamine intolerance due to mould exposure or low levels of DAO (the enzyme that breaks down histamine in the gut). I’d try a low histamine diet & if that doesn’t improve symptoms fully, try low oxalate too. As others have suggested, supplements like vitamin d, b, l-glutamine to support a healthy gut & a good liver support supplement too. If you’re in a histamine flare take vitamin c to bowel tolerance & your symptoms will calm down (avoid if you find you have oxalate intolerance though). Best of luck 
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