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green girl 04-26-2006 05:46 AM

Dysesthetic Vulvodynia and Pudendal Neuralgia
Does anyone out there suffer from vulvodynia? What can I do to relieve the pain? I understand that pudendal neuralgia can cause this does anyone know what to do about this? Thanks green girl

wmkcolors 04-26-2006 08:54 PM

Re: Dysesthetic Vulvodynia and Pudendal Neuralgia
I was wondering how old you are, because premenopausal and menopausal symptoms can trigger bad bouts of vulvodynia, due to a decrease in estrogen. Sexual activity can also aggravate the vaginal tissues. I had to start wearing a low dose hormonal patch, to balance my hormones, and I insert Vagifem tablets, which slowly dissolve, into my vagina, twice a week. This has been the only long term source of relif that I've found, even though I hated taking hormones at first. The pain was too awful, so, I was willing to try anything. Short term treatments have been hot baths, a heating pad, even ice paks, sandwiched between my legs, and any sort of benign ointment, to keep your vaginal tissues moist. I've used vaseline, hydrocortizone cream, to reduce redness, KY Jelly; etc. Estrogen creams versus the Vagifem tablets seemed to aggravate my condition more, so, you have to just try what works for you. It was only after the hormonal treatments that I saw lasting relief. Ask about Vagifem tablets, with their own applicators.

maggie44 05-02-2006 07:46 AM

Re: Dysesthetic Vulvodynia and Pudendal Neuralgia
I also have Dysesthetic Vulvodynia. Have you tried the low Oxalate diet? This has been a life saver for me. There is a new low Oxalate cookbook on the VP foundation website. A lot of the other low Oxalate diets aren't up-to-date. I have also been taking calcium with the diet (Acid redux). I am about 85% pain free . I can actually wear pants now, but never tight fitting ones, I don't want to push my luck. It's really important to read about this to really understand what causes symptoms. The cotton underpants, no perfumes, etc. are all contributing to relief....But diet is really important. I had to give up my favorite things, like chocolate, nuts, teas, spinach etc. but it is so worth it. My doctor doesn't know much about it but I have been reading everything I can get my hands on to help myself. Be careful with topical steriod creams that can cause long term problems if over used. Good luck to you. I feel your pain, literally.

sunshine123 05-02-2006 12:57 PM

Re: Dysesthetic Vulvodynia and Pudendal Neuralgia
I also have Vulvodynia, unfortunately. Emu Oil relieves burning and irritation for me as well as Aveeno baths, Estrace cream. You can get estrogen cream compunded into emu oil, olive oil or something else that won't cause irriation if the Estrace cream does. I'm menopausal too. There aren't many Drs. who know what Vulvodynia is or how to treat it. Icepacks work well when I'm desperate for pain relief. Sitting can be so painful as well as sex.

maggie 44, you're very disciplined to stick with the low oxalate diet. Did you have your urine tested to see if it was high in oxalates? I don't want to give up chocolate or nuts. lol.

green girl; hope you find some pain relief. :wave:

maggie44 05-02-2006 04:41 PM

Re: Dysesthetic Vulvodynia and Pudendal Neuralgia
I never did have my urine tested. I will need to do that. I have been unable to get back in to see my doctor yet but will do that in June at my next visit. I'm going to try the emu oil. Is that a compound drug at a pharmacy or do I go to a health food store to get it.? I know there will be times when I have to eat something bad and need a back-up pain fix. Thanks for the tips.

sunshine123 05-02-2006 07:58 PM

Re: Dysesthetic Vulvodynia and Pudendal Neuralgia
Maggie, you can buy Emu Oil online or in a health food store. You don't need a Rx. unless you're having it compounded with another drug. :wave:

green girl 05-05-2006 04:44 PM

Re: Dysesthetic Vulvodynia and Pudendal Neuralgia
I am 55 years old . My doctor has started me on elavil and its working some. Its nice to know that there is other treatments. Thanks

green girl 05-05-2006 04:46 PM

Re: Dysesthetic Vulvodynia and Pudendal Neuralgia
[QUOTE=maggie44] Have you tried the low Oxalate diet?[/QUOTE]
Yes I did try it and found no releif but maybe I did not stay on it long enough.But I do try to stay away from the things that are high in that. Thanks

sunshine123 05-05-2006 07:47 PM

Re: Dysesthetic Vulvodynia and Pudendal Neuralgia
What dose of Elavil are you on? I tried taking 10 mg. and had to stop after 10 days b/c it was so sedating. I was like a zombie the whole time. I hope it works for you.

green girl 05-12-2006 09:18 AM

Re: Dysesthetic Vulvodynia and Pudendal Neuralgia
How much was the cookbook?

lala-whatsnext 05-13-2006 11:02 AM

Re: Dysesthetic Vulvodynia and Pudendal Neuralgia
I am thinking this is what I have or something similar. I thought it was an infection and the girlie doctor even gave me a script for it. It is still hurting, burning. She ran another test for infections and the culture came back negative. What else can cause it that the culture wouldn't spot? Also where can I learn more about this? I've never read anything about calcium or oxalates before. In fact I've never heard of oxalates at all.

sunshine123 05-13-2006 11:52 AM

Re: Dysesthetic Vulvodynia and Pudendal Neuralgia
It's probably Vulvodynia then, since you don't have any kind of infection. There's lots of info online and there are several books on the subject. :rolleyes:

wmkcolors 05-13-2006 03:01 PM

Re: Dysesthetic Vulvodynia and Pudendal Neuralgia
My vulvudynia was due to early menopause and the effects of pelvic radiation. I do know that sexual activity, hormonal changes, previous yeast infections; etc. can eventually trigger an attack, which can last for days to weeks....I was in agony and scared. Initially, I found comfort with hot baths, ice packs to the crotch area, a heating pad and then inert ointments to keep my vaginal tissues moist. I initially resisted HRT therapy. In my case, with early menopause and an abrupt drop in estrogen, there was an obvious concern. From my research, I did learn that HRT can really help with vulvudynia. I now wear a low dose combo. HRT patch, but the thing that has probably helped me the most is something called VAGIFEM, which is an estrogen tablet that you insert into the vagina twice weekly, with an applicator. Estrogen cream only irritated me more. My vaginal tissues are moist and now I'm free of pain. My HRT is a very low dose.

sunshine123 05-13-2006 04:10 PM

Re: Dysesthetic Vulvodynia and Pudendal Neuralgia
Thanks for the info wmkcolors. I've been resisting hormone therapy myself b/c of my family history of heart attacks, strokes, high blood pressure. I've had a hysterectomy so I don't need Progesterone, but maybe I'll ask for a patch b/c using topical Estrace cream doesn't seem to be enough to help. It doesn't make me burn. My biggest challenge is finding a Dr., as I'm sure everyone is sick of reading from my posts. It boggles my mind how few Drs. know what Vulvodynia is, to begin with. I'm glad you're feeling better now. :wave:

wmkcolors 05-13-2006 08:45 PM

Re: Dysesthetic Vulvodynia and Pudendal Neuralgia
My gynecologist, a male, has been helpful. I was lucky, in that, I had a good doctor from the start. Ask about the Vagifem tablets, whenever you do find a doctor. It's like the Estrace cream. It's estrogen, but somehow the tablets, which slowly dissolve, work better for me. I was nervous about starting HRT, due to an increase in breast cancer risk, but I've had to watch my bone health even more closely, since I started menopause early. Keeping my vaginal tissues as moist as possible helped, prior to starting Vagifem. I tried vaseline and even hydrocortisone cream, to reduce the redness. Once the Vagifem kicked in....the awful pain went away. Thank goodness for warm baths too!!! Best to you.....

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