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Old 10-22-2009, 08:57 PM
 
Location: Florida
6,262 posts, read 16,961,295 times
Reputation: 4690

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Quote:
Originally Posted by chelseachels88 View Post
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
Sweetie,I feel your pain.............visit this site and read everything
Vulvodynia.com :: Vulvodynia Treatment
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Old 10-29-2009, 09:27 PM
 
2,700 posts, read 5,152,810 times
Reputation: 5514
Chelsea, I don't know where you live, but if you're on the east coast -- within driving distance of New York City or Washington, DC -- I can refer you to a specialist in vulvo-vaginal disorders. His name is Andrew Goldstein. Vulvovaginal Disorders, Vulvodynia, Andrew Goldstein, vulva, pain during sex - Home He was my doctor and I'm so thankful I found him.

He doesn't take insurance. That doesn't mean that your insurance won't cover at least some portion of the charges -- at the time that I was his patient, my insurance company covered 70% for me. But you will have to do all the filing yourself. But for me, it was totally, totally worth it.

He's not "just" a gynecologist. Vulvo-vaginal disorders are his specialty and he has patients from all over the country and all over the world. Truly, I can recommend him to you with the greatest, first-hand confidence.

Good luck with your situation. As DreamWeavin' said, I can feel your pain.
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Old 11-04-2009, 08:01 PM
 
1 posts, read 7,450 times
Reputation: 10
Hello Everyone,

A biopsy I had done revealed chronic inflammation of my vulvar area, specifically right at the entrance of my vagina. I have been prescribed many different creams and am now using a very potent steroid Temovate. I was wondering if anyone has had any experience with this drug. It has worked some to control the pain I was feeling but after 2 weeks of use I am developing a very itchy, red and bumpy rash. Could this be a side effect of the cream? Has anyone used this or other steroids before to similar results? I am not currently living in the same city as the GYN I've been working with and plan on calling her tomorrow.
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Old 12-01-2009, 02:30 PM
 
3 posts, read 21,967 times
Reputation: 10
I to wonder if anyone has tried botox, me and my wife are newly weds and we have just be diagnosed with having vulvar vestibulitis. We have tried topo and are now looking for other cures. Our doctor does not have much experience with this however she has been in alot of contact with many other doctors to get there opinion as well. She was first thinking we might have to get surgery however after talking to other patients she changed her mind , stating it probably wouldn't help. We live in the Houston area. I am shocked that with such a world class medical community there is little experience in this part of the country. My wife's Gyn said she would like to try botox injections. Botox is expensive and not covered by insurance so i was wondering if anyone else has tried this?
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Old 12-01-2009, 05:44 PM
 
Location: Florida
6,262 posts, read 16,961,295 times
Reputation: 4690
Quote:
Originally Posted by houguy View Post
I to wonder if anyone has tried botox, me and my wife are newly weds and we have just be diagnosed with having vulvar vestibulitis. We have tried topo and are now looking for other cures. Our doctor does not have much experience with this however she has been in alot of contact with many other doctors to get there opinion as well. She was first thinking we might have to get surgery however after talking to other patients she changed her mind , stating it probably wouldn't help. We live in the Houston area. I am shocked that with such a world class medical community there is little experience in this part of the country. My wife's Gyn said she would like to try botox injections. Botox is expensive and not covered by insurance so i was wondering if anyone else has tried this?
Botox-where?
I fail to see how that will help.
Tell wife to visit the web site of Dr. Glazer in NY
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Old 12-02-2009, 03:20 PM
 
3 posts, read 21,967 times
Reputation: 10
Alot of other types of conditions in that area are using it successfully. Dr. Glazer site does me little good I'm glad in new york they have someone to goto. His site says what the rest of them say , they have no idea just taking shots in the dark.

Aleksgirl did you ever get any answers on botox?
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Old 12-02-2009, 03:54 PM
 
Location: Florida
6,262 posts, read 16,961,295 times
Reputation: 4690
Quote:
Originally Posted by houguy View Post
Alot of other types of conditions in that area are using it successfully. Dr. Glazer site does me little good I'm glad in new york they have someone to goto. His site says what the rest of them say , they have no idea just taking shots in the dark.

Aleksgirl did you ever get any answers on botox?
wasn't recommending one go to NY but the site offers a lot of help from other women suffering with the condition.
No one in the medical field knows nor cares enough about women suffering with this to make many/any strides toward a cure. Now I do see that the medical community made erectile dysfunction a priority and meds to treat that real fast,quick and in a hurry. Problem is if more and more and more women get Vulvodynia then who are these men gonna have sex with?
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Old 12-02-2009, 05:57 PM
 
3 posts, read 21,967 times
Reputation: 10
I'm not sure what that has to do with my original question, but thanks none the less. I have found a couple resources on using botox. The first thing i found was a case study done in Denmark , however I was unable to find the findings. If anyone has any further information my wife and I would be greatly appreciative. I also found this puplication:

Botulinum toxin a for vulvodynia: a case report
The Journal of Pain, Volume 5, Issue 4, Pages 238-240
J.Gunter, A.Brewer, O.Tawfik

but I am unable to access anything other then the abstract. I will talk to my wife's GYN and see if she has access to that medical journal so that she can get me the full article. I will let you know what I find. Thanks in advance.

Last edited by houguy; 12-02-2009 at 06:23 PM..
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Old 12-02-2009, 06:28 PM
 
Location: Chicago, IL
8,998 posts, read 12,761,482 times
Reputation: 3536
I suffer from it around the time of my cycle.
I mentioned it to the GYNO about a year ago but she didn't pay much attention to it.
The best thing is for me to sit down. I can't really go out shopping during my cycle because sometimes it's just painful trying to walk.

I really feel for your friend. I couldn't imagine dealing with that pain on a frequent basis.
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Old 05-30-2010, 11:27 AM
 
1 posts, read 6,752 times
Reputation: 11
If anyone has had any success with any vulvar specialists in NYC or LI area since the last post in Oct 2009, please let me know who you went to. Please respond to lsarnoff@aol.com
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