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Hello All~

This is a sensitive topic and I hope nobody is offended by my question. No offense is intended. For the ladies out there, do any of you suffer from vaginal pain where there is no known cause? This is called 'vulvodynia', and it appears to be a nerve-related illness that there is no cure for - only treatment of symptoms - sound familiar? It can be constant or cyclical, and the pain can be excruciating. There are two main forms of the illness, as far as I know, but I'm seeing a specialist a week from Friday. Anybody else, or am I just really lucky?

Thanks,

Cheers and health,

Jana

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I get a pain but I'm not sure if it's the same thing but it will often wake me up during the night and what it feels like is a cramp of my cervix.

I mean it really cramps up I would compare it to a labor pain.

Nothing helps-I have taken motrin and it doesn't't touch it.

Sometimes heat will help. I have to put it between my legs and in 20 minutes or so.

I'm not sure if this is the same thing or not but it is extremely painful.

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Hi Jana-

My sympathies. I have had vulvodynia attributed to lichen sclerosis for 5 years. I wish I had something for which there was a cure rather than treatment. It was excrutiating at points. When I came to out in the ICU after spinal fusion therapy I was writhing from the pain - apparently the doc had been wrong about the nerves not being affected prior to surgery and when everything was put back in place the nerves came back full force. Fortunately the nurses knew enough to get me an ice pack.

I don't wear compression garments due to this as air circulation is crucial. I tend to wear skirts most of the time. the treatment is strong steroid cream which must be applied weekly after the initial /acute problem is under control.

From a support group I learned that many have problems if they use Always sanitary pads. If you use them toss them -it definitely helped.

best of luck,

noreen

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Hi,

I don't know if this is the kind of pain you are talking about, but I get electric shock like pains inside my vagina. Usually when my back is bad.

I informed my Dr and he just looked at me as if I was mad! I am lucky they aren't constant and the episodes are only a couple of times a year. The episodes can last hours or days and its just like every few minutes you are being electrocuted. It makes me yelp out with pain.

You have my sympathy, I didn't even know this had a name and yet again I thought I was the only one!

Thank you for being brave enough to post this.

Rach

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I get strange, very strong, "sparkly"/electric vulvar pain around the beginning of my menstrual cycle. I was so interested to read Reen's post, because I have never been able to use Always products. In fact all menstrual products seem to cause a bit of difficulty and I have been using a silicone menstrual cup instead, which is great as long as I don't have too much internal swelling (after about day 2 of my cycle). I also have to use very soft, unscented toilet paper. Thanks for posting this - it's hard to discuss some of this, but important too.

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http://healingcycles.net/vulvodynia-2/

Here's an article on vulvodynia. I have vulvodynia pain if I eat too many nuts or chocolate despite getting my candida under control. I was thinking that this was an oxalate problem but it suddenly dawned on me this morning to look at Herpes flares too. Both nuts and chocolate are high in arginine and arginine causes Herpes viruses to replicate. I get sores in my nose or canker sores in my mouth everytime I eat too many foods with arginine.

I'm not sure what caused my vulvodynia but my GYN told me that I tore pretty bad with both of my child births. I also got a nasty infection and ran a high fever from the last child birth. Maybe one of the viruses I have causes this.

This article has a list of what might cause it ... The part that I bolded is a possibility since I have a history of kidney stones too.

What causes vulvodynia?

Western medicine is still uncertain as to the cause of vulvodynia. One theory is that vulvodynia can be caused by oxalates.

Oxalate is an organic chemical that is found in many foods, especially those of plant origin. It is also a by-product of some metabolic processes in the body.

Oxalates (in the blood in the form of free oxalic acid) are ordinarily filtered by the kidneys into the urine, and eliminated from the body. If the kidneys do not filter fast enough, oxalates can form crystals that develop into painful kidney stones.

If the concentration of oxalates in the urine is too high, microscopic crystals can form in the bladder. Some cases of vulvodynia have been linked to microscopic oxalate crystals that irritate the nerves in the urethra.

On occasion, I use an organic sanitary pad that Target carries (organyc) because I react to all other pads. I was using them for urine leakage but I rarely need these anymore ...

I've been on the low oxalate diet for a couple of years now and have noticed that as long as I AVOID high oxalate / high arginine foods like nuts, I'm pain free. There's a website for trying this diet ... I never looked for a vulvodynia forum on the web.

http://health.groups.yahoo.com/group/Trying_Low_Oxalates/

And I still have orthostatic intolerance ... woe is me ... lol ... dizzy

PS. I edited this to include info on viruses like Herpes causing this ... I'm wondering if a virus like Herpes is responsible for my OI too. We have a thread here on possible cure for CFS where viruses are being discussed. tc ...

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I get the occasional shocks, but not really pain, and thankfully it is very rare. I also use soft unscented toilet paper and unscented feminine products. My skin is really sensitive.

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My mom and I have been diagnosed with small fiber neuropathy, like yourself. The burning that we get on the vulvar areas isn't as intense as some have described, but definitely irritating. I notice that mine is aggravated by whatever normally causes my SFN burning to escalate (like stress, heat, excessive activity, etc). Gabapentin has been helpful for the both of us.

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Thanks to everyone who contributed to this post. Very informative and I hope to find out more when I see a specialist in Phoenix on Feb 25th. If anyone is interested, PM me and I'll let you know what I find out.

Thanks again, and cheers!

Jana

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  • 1 year later...

Just wondering how common this is. I started taking b6 + magnesium a few months ago and it helped

tremendously with the pain. I've been on a low oxalate diet for years but everytime I tried upping

my oxalates I ended up in extreme pain until now.

It also appears that my oh (orthostatic hypotension) is gone for now, kow, and I thought these supplements

might have helped that too. Both affect nerves ..

Anyone ? Could there be a connection ?

Tc .. D

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I had horrible burning pain for years so intense I couldn't sleep. It was not an infection but I was on fire.

Nothing I tried stopped the pain. All these years later I still do not know what caused it. It gradually got

better which I contributed to getting some of my allergies under control.

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Alicia,

Good to hear you got this under control. I'm not sure if that was vulvodynia either. Mine's

always been horrific pain but not a burning pain. Standing or sitting is impossible when

it's bad. My allergies seem to be under control as is my candida. Menses have stopped so

that's out. It appears to be a connective tissue disorder.

I'd liken it to the feeling I got if I left a tampon in too long. I wonder if there's a connection to previous tampon usage. Tc .. D

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