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Old 12-29-2002, 10:40 PM   #1
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aliceaz2002 HB User
Unhappy DIV/Vulvovaginitis/Vulvodynia: Any help?

I have been diagnosed with Desquamative Inflammatory Vaginitis and Vulvovaginitis,a subset of Vulvodynia. My doctor is trying to help me, but I'm not getting much reflief. Anyone have any ideas to help me?
Thank you.

 
Old 03-15-2003, 05:17 PM   #2
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student until 2004 HB User
Unhappy

I have vestibulitis, which is a form of vulvodynia. My case is mild compared to what I have read about. I have intermittent itching, pain, and pain with intercourse. You might want to try reading The Vulvodynia Survival Guide by Howard Glazer and Gae Rodke. If nothing else, it will let you know you are not alone.

So far, I've found nothing that has helped me. For the first year or so that I had it, I didn't know what it was. I kept thinking I had yeast infections, so I was self medicating. I later found out that this is not smart, because you can end up creating too much of an acidic environmentment in your vagina. But, that's another story.

When I finally went to the doctor, she recognized the syndrome, but she knew very little about it. She started me on Amitriptyline 10-25 mg. per day. I was on that for six months. All it did was make me exhausted. I could hardly get out of bed in the morning (and I am a morning person). Come to find out, I wasn't even at the therapeutic level of the medication, so I guess I did it for nothing. When the amitriptyline didn't work, my GYN referred me to a local specialist who treats nothing but vulvodynia. That was a few months ago. He told me that the pH in my vagina was low (meaning it was acidic) and he has tried me on different antibiotics to try to kill the bacteria producting the acid. This still hasn't helped. My next step would be to go on Neurontin, but I am hesitant to do that because I am afraid it, too, will make me sleepy, and I can't afford to be that tired again. Plus, the Neurontin will alleviate the symptoms, not cure the syndrome, and I don't know if I want to be on medication for the rest of my life. Other options include estrogen cream (temporary fix) or surgery. At this point, I am living with it because the alternatives do not sound much better.

Hope some of this was helpful. If anyone has any advice on what works, PLEASE let me know!

 
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Old 07-30-2003, 04:28 PM   #3
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xBabyDeex HB User
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Hey I've just been diagnosed with vestibulitis by my local GUM clinic.However, the consultant never took any swabs to rule out other infections so I'm going to go and get some done. I've been given lignocaine cream but it doesn't seem to work. What works with you and eases the pain?

 
Old 11-19-2003, 12:43 AM   #4
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Have you tried Diflucan on a long term basis ? That is what I'm currently doing and I'm about 85% pain free. I am praying that it lasts when I stop my dosage (1 per week for 2 mos, then 2 per month for 4 months). I also made other changes: not using fabric softner and bleach, I NEVER ever let soap get near my vagina..I use Aveeno only. And I always spray my vagina with a water bottle after I urinate. I'm also using estrace now at night. And only use maxi pads made of cotton. DON'T use tampons. I still have some pain "after" intercourse but nothing like before. (like not even getting to the entry part before I said forget it!!!) I also use a cream that helps with balancing acid in my Vagina..but I haven't had to use it for about a month now.

Lexie



Quote:
Originally Posted by student until 2004
I have vestibulitis, which is a form of vulvodynia. My case is mild compared to what I have read about. I have intermittent itching, pain, and pain with intercourse. You might want to try reading The Vulvodynia Survival Guide by Howard Glazer and Gae Rodke. If nothing else, it will let you know you are not alone.

So far, I've found nothing that has helped me. For the first year or so that I had it, I didn't know what it was. I kept thinking I had yeast infections, so I was self medicating. I later found out that this is not smart, because you can end up creating too much of an acidic environmentment in your vagina. But, that's another story.

When I finally went to the doctor, she recognized the syndrome, but she knew very little about it. She started me on Amitriptyline 10-25 mg. per day. I was on that for six months. All it did was make me exhausted. I could hardly get out of bed in the morning (and I am a morning person). Come to find out, I wasn't even at the therapeutic level of the medication, so I guess I did it for nothing. When the amitriptyline didn't work, my GYN referred me to a local specialist who treats nothing but vulvodynia. That was a few months ago. He told me that the pH in my vagina was low (meaning it was acidic) and he has tried me on different antibiotics to try to kill the bacteria producting the acid. This still hasn't helped. My next step would be to go on Neurontin, but I am hesitant to do that because I am afraid it, too, will make me sleepy, and I can't afford to be that tired again. Plus, the Neurontin will alleviate the symptoms, not cure the syndrome, and I don't know if I want to be on medication for the rest of my life. Other options include estrogen cream (temporary fix) or surgery. At this point, I am living with it because the alternatives do not sound much better.

Hope some of this was helpful. If anyone has any advice on what works, PLEASE let me know!

 
Old 08-01-2004, 11:59 PM   #5
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~Tyger~ HB User
Re: DIV/Vulvovaginitis/Vulvodynia: Any help?

Hi everyone,
I have just been diagnosed with vulvovestibulitis syndrome and have been put on the amitriptyline 10mg's nightly.
I am preying it works.
If any of you can give me some hints on the best way to manage this pain and maybe help to cure it, that'd be great.
I hate this condition!

Tyger.

 
Old 08-08-2004, 04:42 PM   #6
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esbashar HB User
Re: DIV/Vulvovaginitis/Vulvodynia: Any help?

I've been struggling with vulvadynia for several years and a biopsy just revealed that the problem is lichen planus, a skin disorder that causes lesions and scarring of the vulvar and vaginal tissue. It took two years to find a doctor that had a clue of what to do with this. I am using a steroid ointment which is helping but also, I've gotten some relief from really good skin care. All cotton, white undies, fragrance free detergent and no fabric softener on anything that touches my bottom, no soap ( I use Aveeno on my skin and water only on my vulva- no washcloth). I use a hairdryer to dry myself after my shower and keep a change of underwear with me all the time. I keep myself covered with A&D ointment to protect the skin from sweat and urine and I try to rinse whenever I go to the restroom. I wear skirts most of the time and go without undies whenever possible. This has been really difficult for my husband because sex has been so painful that I don't want to think about it, yet I'm walking around the house in skirts and no panties. Life just isn't fair.
Really, this has been so frustrating. It's not something you can talk to just anyone about and I went to six different doctors before I finally got to someone who knew how to find out what was at the root of the problem.
I hope there's something in here that might help you. You aren't alone. There is a lot of good info on the internet. Let me know if you want it and I'll list some websites.
God bless,
Sharon

 
Old 08-09-2004, 07:14 AM   #7
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ashpie HB User
Re: DIV/Vulvovaginitis/Vulvodynia: Any help?

HI SHARON, i WANTED TO TELL YOU I HAVE BEEN GOING THROUGH THE SAME THING NOW FOR ABOUT 18 MONTHS..DO YOU HAVE ANY SKIN CHANGES ON YOUR VULVA? WHITENESS OR REDNESS? WAS WONDERING HOW YOU GOT THE BIOPSY DONE..I AM FEEL RAW AND IRRITATED 24/7..I ALSO KEEP THE A&D OINTMENT ON BUT I AM CURERENTLY PREGNANT SO I CAN'T USE ANYTHING ELSE..I HAVE BEEN TO 6 DOCTORS AND DERMATOLOGIST AND JUST HAD MY 2ND BIOPSY..1ST ONE SHOWED UNSPECIFIC INFLAMMATION..THE PROBLEM IS THAT THE DOCTORS NEVER BIOPSY THE AREAS THAT FEEL BOTHER ME...THE AREA IS ABOVE MY URETHRAAND UNDER AND AROUND KY CLITORIS...THE SKIN ACTUALLY HURTS TO TOUCH..WAS WONDERING BESIDES PAINFUL SEX WHAT OTHER SYMPTOMS YOU HAD

 
Old 08-11-2004, 03:09 PM   #8
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esbashar HB User
Re: DIV/Vulvovaginitis/Vulvodynia: Any help?

I hadn't really noticed any whiteness but it's really hard for me to check. My husband did see some little white bumps around the vagina and my vulva stays red and inflamed.
When the doctor examined me, she said that my inner labia was kind of small, which might be normal but could also be caused by a skin problem. Now I know that LP can cause the labia to actually shrink.
I frequently had a sense of rawness in the perineum. Sometimes I would have pain that would just radiate from the clitoris or from the vulva for no reason. Sitting in certain positions would cause pain and I frequently find myself putting my legs up in my chair. I itched terribly especially in the morning, when for some reason, I seemed to be especially lubricated. But when I tried to have sex, there wouldn't be any lubrication. And I would hurt for hours after sex. This one place that she biopsied has bothered me for years but no other doctor would biopsy it. I'm not sure what she saw that was different but when we talked about the biopsy, she went right to that spot and said that's the place she wanted to check. I've had burning with urination, but not always. I've had severe itching at the front of the vulva, around the clitoris, and sometimes I just couldn't help rubbing myself with the washcloth. Then, of course, I was sore for a couple of days. Sometimes, it seemed like even the pubic hair hurt. It's really just been a cycle of burning, itching, pain, soreness and rawness for a couple of years now. I'm so greatful to have found a doctor that seems to be able to help me, but also annoyed that it took so long and that so many of us suffer with this.
If you haven't seen this article, it's really good with pictures and descriptions of different vulvar skin disorders.
http://www.ourgyn.com/article_retrieve.php?articleid=63# It's a little graphic but excellent information.

 
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