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~Tyger~ · 08-01-2004, 11:42 PM

Hi everyone,

I've posted on many threads about my problem with pain during sex, which started off as a yeast infection, but became a chronic pain that didn't go away.

As I was tested free of infection by the doctors, I went to a vulva specialist who FINALLY gave me some answers!

I have Vestibulitis or vulval vestibular syndrome

Apparently this condition is COMMON, which was the last of my thoughts...its just underdiagnosed in many women. To treat it, I have been given a very low continuous dose of 'Amitriptyline' which is usually prescribed (in larger doses) as an anti-depressent. It completely fixes this condition in about 70% of cases, so my fingers are crossed...as I have had the condition for only a few months, its more likely to be fixable.
The reason for this condition is mostly to do with nerve endings... a kind of 'nerve damage' sometimes as a result of infection. Please do a websearch about this condition, or post back on this thread if you'd like me to elaborate more

My symptoms are:
- initial yeast infection (it was cleared, but I BELIEVED was still there because of the pain)
- pain during sex!! mainly penetration
- a subtle irritation day-to-day
- discomfort with tampons

It was mostly a sexual problem, and this is my most prominant symptom by far. I have no physical abnormalities in that area and no infections to speak of (apart from the initial one that kicked it all off). So if this sounds like you, post back, I'm happy to help!

Tyger.

~Tyger~ · 08-04-2004, 08:55 PM

If anyone else has this condition, please post here, it'd be good to have some support seeing as I'm so new to this condition, and I don't really know what to expect.

Thanks.

ashpie · 08-05-2004, 07:36 AM

hi, I was diagnosed w/ vulvadynia..I only sometimes have pain during sex my main symptoms are constant burning , raw feeling of my vulva esp. my inner labia ..I have been living w/ this for a year and a half now..I've gone to 2 dermatologist and my ob/gyn various times and I am currently 34 weeks pregnant and dying because I can't start treatment until after the baby..I went to a vulvar specialist and saw the nurse practioner who did the q-tip test and she thinks I could have a skin condition..do you have any external vulvar symptoms..

~Tyger~ · 08-05-2004, 09:50 PM

Lulise, you are so lucky...I wish it were the same case for me

I've been living with this for almost 4 months now. I'm just preying the anti-depressant drug the specialist gave me will work.... I'm not even sure how its supposed to work, but I'm keeping my fingers and toes crossed....
Perhaps it can just go into 'remission' like yours did...it is also possible you didnt have vestibulitis, just irritation from your yeast infection. I hoped that was the case with me, but sadly I was wrong

Ashpie - I have no external vulval symptoms at all - its entirely in the vestibule (inner) area and it hurts when my boyfriend penetrates. It hurts alot

Congrats on your little bubby...do you know what treatment your doc is planning to start you on when you have had the baby?

Thanks, Tyger.

helpmeplease398 · 04-16-2005, 08:03 PM

I just was diagnosed with vestibulitis a few days ago. I have always had a little pain with penetration while having sex, but I thought that was normal. 5 months ago I got a yeast infection that hasn't really gone away. Has anyone else had this problem? I'm in discomfort all of the time but not really pain. I feel like I have a yeast infection all of the time but I think when I go to the doctor my yeast culture comes up negative. Does anyone else have daily discharge because of this?

~Tyger~ · 04-23-2005, 08:06 AM

Hi helpmeplease, i'm sorry to hear you've been diagnosed with this too, its a curse, isn't it?

Mine also started from a yeast infection, although according to the doctors swabs I cleared that rather quickly with canisten and diflucan.
BUT...just recently I went to a new specialist who knows about this kind of thing...he told me that doctors just check for the usual vaginal yeast infection, whereas often people with vestibulitis have a different kind of yeast infection that is actually embedded in the vulval SKIN. The only way to test for this is to take a scraping, which the specialist did, as well as examine my vagina under a very sensitive microscope, where he saw some yeast.
So, looks like all this time I've thought I was clear, I'm actually not. He's put me on a long-term course of Nizoral (ketoconazole) to hopefully clear this infection. After that, we can start work on the vestibulitis pain itself

what a hassle.
If possible, try to get referred to a specialist who deals with this kind of thing and can test you for this rarer form of yeast. At least mention it to your doctor, otherwise they'll just continue to check for a vaginal yeast infection with a swab, and you're probably completely clear of that version, as you said! It could be the yeast in teh skin that is giving you grief...

Good luck, let me know how it goes. I'll let you knwo how the Nizoral goes

Do you know of many other vestibulitis treatments??

Tyger.

sunshine123 · 04-24-2005, 01:37 PM

Hi ladies: I've had Vulvodynia for over 20 years and I can't even find a competent Dr. where I live. I'm going crazy from the burning. Sometimes, I can go 4 or 5 days without pain, but then it always starts up again. I tried taking 10 mg. of Elavil a day a couple of years ago, but it turned me into a zombie and I had to stop. I feel so hopeless and alone right now. I can't even remember when my husband and I last had sex. :-(

~Tyger~ · 04-24-2005, 09:01 PM

sunshine, is vulvodynia the same as vestibulitis?? I'm so sorry you have to deal with this pain...its just not fair, is it? I hope you can find a specialist in your area...it takes a lot of close contact with a good specialist to work it out, I've heard. I'm on the way, but its costing me a bucket-load. Good luck!

sunshine123 · 04-25-2005, 11:33 PM

Hi Tyger:

Vestibulitis is a subtype of Vulvodynia. Thanks for the kind words. I contacted a woman who has group support meetings at her house and hopefully, one of the women will be able to recommend a competent Dr. for me.

I hear you about the treatment costs!!! I hope we all find pain relief soon.

Sue

GorgeouslyJealo · 04-28-2005, 03:44 PM

I just started feeling the burning thing too. My man went out to sea for two weeks and when he came back I went over in the morning to make love to him. At first it didnt hurt at all. It was normal. Then the second time around it hurt when he went in. A little on the inside. Like where my hymn used to be (well still is for some reason) I was like maybe we were to rough and I'm just not used to sex since you've been gone for awhile. We tried the next day...usually I'm good the next day if we get a little rough. Well it still hurt like a lot! We had to stop because I just wasnt enjoying it at all. I would rather of had it in my bum then there. Thats how bad it was. So on Wendsday. I felt around nothing hurt me and we tried again and I still hurt. Not as much but it was uncomfortable. I'm not dry so I don't get it. I did get my **** hood pierced about a month ago but thats a whole diffrent part of my flower. Should I try and go to the doctors and tell them about this thing. I have military doctors and I don't feel they will really care much. Thanks for reading

~Tyger~ · 05-06-2005, 12:17 AM

Hey everyone how are you all going?
Any diagnosises so far? Any effective treatments??
I am powering on with my Nizoral and hoping it will change things...its been 3 weeks now and no change so I'm skeptical and just want to be better.

Tell me how you're all feeling...

Tyger.

twinburl · 05-09-2005, 06:42 PM

Hey I have had vulvadynia for about 8 yrs. Sometimes the pain is not as bad as other times but right now it is not so good. It almost seems like I have a little bit of a spasm there also. That is when it seems to hurt the most. Sex is painful, setting is painful, wearing cute tight jeans is really painful. I would love to hear of something that has worked for anyone out there.

no_storybook · 05-15-2005, 08:28 PM

i am about to go see my doctor. but for the women who do have this condition what rating of pain do you have? during sex i have discomfort as he is entering and once inside it doesn't hurt so much anymore, but it doesn't feel great either. when i first started having sex with my boyfriend i too got a yeast infection, but that's long gone. i will definetly ask my doctor to check me for this condition. but i have always assumed the pain is because i'm very small in that area. also though i didn't bleed when i lost my virginity and i do know that i still had my hymen. can it still be there and possibly be the cause of pain? thank you so much for any advice

JinL · 05-17-2005, 05:01 AM

Do not take anti-depressents any longer than necessary. Most will cause loss of sexual desire & performance problems.

DannyLea · 05-18-2005, 01:44 PM

This is good to know, I will talk to my doctor. I have had this pain from my first time on. So hopefully i get get some help for this. Thanks for the info!

ScaredRachii · 07-15-2005, 12:25 AM

I definitely think this is what I have. I have painful sex or even the slightest touch is uncomforting. I don't enjoy sex and it's very frustrating. I'm thinking about going to the doctor for a UTI that I recently got. And I tend to get alot of yeast infections. Does this disease cause that also? It's very painful and I wish I had more people to talk to. If anyone wants to e-mail me so we can talk a bit more easily, my email is [ please read and follow the posting rules - no emails ]

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mgrahamloveskid · 07-16-2005, 07:25 PM

OMG I cant believe that I am not the only one who has painful sex out there and its with every guy that I have been with and I ask the doctor at planned parent hood and they said that I need to open my self up and I am like its not that I new there had to reason I think I might go to a regular gyn and see what is the problem is and thank you very much bc I never new there was something outthere like that.

~Tyger~ · 07-26-2005, 11:18 PM

How is everyone going with diagnosis and treatment?

I'm now on a low-dose antidepressant that in such low doses is supposed to help cure the nerve pain that causes it to hurt during sex. I have to take it for a long time and slowly up the dosage till I feel a difference. Wish me luck!

I hope you are all finding the causes for your pain and are being treated appropriately?

Tyger.

ScaredRachii · 07-27-2005, 06:09 AM

The pain was gone for about 2 days, until I got my period and afterward, I had a yeast infection type pain, itch, and burn. I have a doctor's appt today so I can finally get all this straightened out. I used monostate 1 (sp?) but it really didn't help much. So hopefully this will get resolved. Good luck with your medications!

rudenreckless · 07-29-2005, 11:00 PM

Gah! This explains almost every attempted..and I mean attempted sexual experience I have had. Well almost, I have attempted to have sex but the pain is unbearable. I don't get it. I have heard of having sex for the first time being painful and such but this is like crying, huddled in a corner pain. I think I may have what you have described. I will go to my doctor and definately ask, cause I am quite concerned. Thank you for your post.

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