Vulvodynia - any help ?
 

Hello,

I have a history of inherited Thyroid problems, namely Hashimoto's Thyreditis, pollen and food allergies, and endomitriosis.

A new little something has occurred now, namely Vulvodynia - which is causing a new running around to doctors who cannot do anything about it. No known treatment and a diagnosis which just means "pain in the vulva". I already knew that but what is to be done with it???.

I have been told that I have a lot more nerve endings and that it probably has to do with my already existing neuropathy due to my thyroid disease, but it has gotten worse in stead of better on my thyroid meds. Everything else like neck pain, joint pain, and tingling in the extremeties etc. have become so much better. Why not this?

I have tried all things suggested on the internet for vulvodynia, but if any of you have any clues, I would be grateful for even the craziest ones :)

Lets exchange experiences !

It may not be connected.

Some believe that vulvodynia can be caused by high oxalate in food you eat.

Normally we have bacteria in our bowels that complex oxalate from food and prevent it from being absorbed in large amounts.
But using antibiotics for infections during your life, may kill these
beneficial bacteria off. Then the oxalate gets in and comes out in the urine. Oxalate will make calcium oxalate kidney stones in some people. And some believe that oxalate in the urine causes pain in the vulva.
http://www.med-owl.com/health/Vulvod...ates-Diet.html

This is a sample of the low oxalate diet:
http://www.branwen.com/rowan/oxalate.htm

Thank you, Mrs D.

Thank you for the links. Actually I have already searched old posts and found your links, and I have already printed out the first one and sent it with a letter to my gynocologist asking whether she knows anything about it.

Do you know how to get the beneficial bacteria back?? This seems the simplest solution, namely to introduce the bacteria to prevent the problem in the first place.

As for the second link I am a bit sceptical. I am already on a diet due to my food allergies, and I really need to eat something and also a balanced diet in order not to get malnutrition. It is difficult enough to navigate already.

Do you or anyone else have any personal experience taking Calcium Citrate??

Oxalates
 

Another question regarding oxalates.

What oxalates are we talking about?? I understand that there are different ones, is it Calcium Oxalates, Potassium Oxalates..... or Ammonium Oxalates???? Or is it all oxalates???

Oxalates are salts derived from acids or ???

Understanding this is not easy! Help!

I don't know if this is available where you are:

http://news.bbc.co.uk/2/hi/health/7277967.stm

This thread post #20 has a post from lefthanded, who uses
a probiotic that does complex oxalate:

http://neurotalk.psychcentral.com/sh...obacter&page=2

The product:
http://www.vsl3.com/VSL3/default.asp

Thank you again, Mrs. D,

It looks very interesting, but I doubt that I can get any doctors involved in VSL and probiotics here.

The food industry is certainly researching probiotics. I am wondering whether a youghurt with probiotics would do the trick, :winky:

What to do with vulvodynia? Oxalates is not considered the cause, but only a part of it.

That said I am going to try a new youghurt :smile:

HI There
I am very familiar with vulvodynia, and yes, when the dr tells you you have a painful vulva, you feel like saying " No Kidding!" what do I do about it?
If it is a burning or throbbing, those types of sensations, you may want to look into a pelvic floor physical therapist. You can usually find one by looking up the women's services dept of your hospital and asking the if there are PT's that have worked with vulvodynia patients and pelvic floor problems.
I have pudendal neuralgia, which is a nerve condition where you can have a tight pelvic floor which then impinges on the pudendal nerve ( I believe my case). The PT will work internally to release any tight bands you may have to release tension in the pelvic floor. It has helped me quite a bit. My only symptom is burning in the vaginal area.
In the time being, you could also try a lidoderm/lidocaine cream that could help called Elma cream you would have to get from your gyne. I would look into the pelvic floor physical therapist though and see if you can at least get an evaluation.
take care, jess:)

I went the opposite way. Last year I had horrible vulvodynia. I was in agony and at times had to be bedridden. I finally went to a gyn. pain specialist who thought it was muscle related and recommended I go to pelvic floor rehab. Within three months, I was so much better and continued to improve until I barely felt anything. After three months of this heaven, I was stricken with neuropathy, which is now body wide and currently ideopathic. I have had some family ask if there could be some connection, since I had one, and then the other so soon, but I just can't figure out what that connection could be. So sad and devastating to get better with one disorder, only to be hit with another...:(

Vulvodynia
 

I am new to this chat. I have been diagnosed with vulvodynia and went to Dr. Meltzer in Northbrook, Il. He found a rare yeast and said at that time last March 2009 I had Vuvular Vestibulitus and after going to him several times he got rid of the yeast and now says it is Neuropathic. I am currently getting Nerve Blocks a Pudental one. Yesterday's helped a little and am going to try Amitriptilyn tonight and maybe go back on Neurotin. Am looking into PT too.
Diet did not help.
lbayless

Citrical
 

I take Citrical twice a day and try to watch my Oxilates. Not sure that really helps. Antioxidents like blue berries, rasberries, black grapes are supposed to help. I have Neuropathic Vulvodynia and am now trying pudental nerve blocks and use an Ice pack a lot which is annoying.
lbayless