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Old 11-06-2008, 04:41 AM
 
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Is anyone suffering from vulvodynia? I am interested in any treatment that has proved successful for you. A dear friend has this debilitating and painful condition and I am trying to help her. Thank you for any information you can provide.
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Old 11-06-2008, 05:30 PM
 
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I am a physician who has treated some cases of vulvodynia. It may be caused by several different disorders, one of which is vestibulitis. Whatever the cause, it is one of the most difficult syndromes to treat. I'm sure your friend has had some frustrating experiences so far.

It is important to have a doctor look carefully for any possible conditions such as yeast (esp. if it is cyclic) or bacterial infection, psoriasis, contact allergy or other skin disorders, HPV infection and a few other things that would be specifically treatable. Cultures and biopsy can help rule out certain problems.

Vestibulitis may respond to medical treatment such as estrogen creams, but in some cases requires surgical intervention. Some patients with vulvodynia of unknown cause respond to tricyclic antidepressants.

It is supremely important to discontinue the use of any and all over-the-counter products, soaps, bubble baths, harsh toilet paper, etc. Extremely gentle treatment of the area is important--water only to wash, or at most Cetaphil lotion cleanser with good rinsing and air-drying.

She needs a doctor experienced in vulvodynia, preferably female (sorry guys), who is known to be kind, gentle and will listen as long as necessary to what her patient has to say.

Good luck.
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Old 11-07-2008, 08:59 AM
 
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Mozart: Thank you for your understanding and advice. Currently she is being treated with neurontin (sp?) and Lidocaine (sp?). She has been tested for everything but nothing shows up.
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Old 11-08-2008, 05:18 PM
 
428 posts, read 1,630,393 times
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Quote:
Originally Posted by Ellwood View Post
Mozart: Thank you for your understanding and advice. Currently she is being treated with neurontin (sp?) and Lidocaine (sp?). She has been tested for everything but nothing shows up.
You are welcome! That treatment sounds reasonable, although I think possibly if Neurontin doesn't work, she might try Elavil.
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Old 03-04-2009, 09:45 AM
 
Location: Levittown
43 posts, read 133,280 times
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does anyone know of a Vuulvadynia specialist on Long Island
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Old 03-04-2009, 10:18 AM
 
Location: in a house
3,574 posts, read 14,339,300 times
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Quote:
Originally Posted by Mozart271 View Post
I am a physician who has treated some cases of vulvodynia. It may be caused by several different disorders, one of which is vestibulitis. Whatever the cause, it is one of the most difficult syndromes to treat. I'm sure your friend has had some frustrating experiences so far.

It is important to have a doctor look carefully for any possible conditions such as yeast (esp. if it is cyclic) or bacterial infection, psoriasis, contact allergy or other skin disorders, HPV infection and a few other things that would be specifically treatable. Cultures and biopsy can help rule out certain problems......She needs a doctor experienced in vulvodynia, preferably female (sorry guys), who is known to be kind, gentle and will listen as long as necessary to what her patient has to say.

Good luck.
In addition to the good doctor's list, vulvodynia can also result from other issues unrelated to physical symptoms. She does need a sensitive health care provider who will consider these possible causes as well.
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Old 03-04-2009, 11:39 AM
 
Location: Florida
6,266 posts, read 19,159,728 times
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the problem with seeking treatment for this is that so many gynos simply don't know enough about it while others simply don't give a s**t and will brush you off like it's in your head and not your vagina. Or they will treat you like a lab rat and that is never appealing. Never consent to surgery until all other issues have been addressed.
Your friend should start by researching online. There was,at one time, a site called Vulvodynia by a Dr Glazer in NY.
Your friend should begin by using a detergent that is free of perfumes; like Free&Clear. Wear only white cotton panties.
Showers only--baths are now out! No soaking in bubble baths--nope,those days are over.
Latex can make matters worse so when having any vaginal exam she should say no to latex gloves.
No OTC meds like Vagasil,etc.
Have her and her partner wash themselves all over prior to sex then again immediately after in plain water.
Wearing tight fitting pants will make it worse until she gets this under control.
Drinking a lot of water helps.
If using condoms have her make sure they are not latex.
It takes time and patience. Trial and error.
Tell her on really bad days she can and should use ice packs on the vaginal area and might try A&D ointment if she must have something to ease the discomfort.
I'll add other ideas if I think of more.

Oh yea and in case you're wondering--yep I have been there-done that. Took me over 5 years to get a grip on it.
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Old 08-27-2009, 04:51 PM
 
9,319 posts, read 16,655,876 times
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Quote:
Originally Posted by Ellwood View Post
Is anyone suffering from vulvodynia? I am interested in any treatment that has proved successful for you. A dear friend has this debilitating and painful condition and I am trying to help her. Thank you for any information you can provide.
As a followup, she is in remission. There is a clinic in Dartmouth in New Hampshire that specializes in the condition. The doctors at Dartmouth evaluated and advised her physician in her home town and worked closely with them.
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Old 09-21-2009, 12:52 PM
 
1 posts, read 9,560 times
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Has anyone heard about Botox for vulvodynia? Also, any feedback on Bartholin's glands removal?
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Old 10-22-2009, 07:55 PM
 
1 posts, read 9,354 times
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hi i've had vulvodynia for a year and a half now. My main problem now is aside from some slight iching and burning of the vagina is that all the muscles around my vagina like across the pubic bone and in the inner groin area ache intensly. I do stretches, excersices and swim and i've also tryed not doing anything for a few days as not to aggravate it but it just won't go away please help!
p.s. sorry about the spelling i'm really tired and my brain doesn't spell very well when i'm sleepy
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