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Old 08-21-2008, 10:05 PM   #1
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mystery vaginal condition

I seem to be suffering some sort of mysterious condition. About 8 years ago I started noticing redness, itching and soreness around the vulva and labia. The gynecologist diagnosed an infection and I followed the treatment after which the pap test came back negative, but I felt no relief whatsoever. So I kept going back. I thought I had a venereal disease but it never came up in any of my tests. Every time I visited the doctor there was a new theory. I even had a lot of intrusive procedures done, I never understood why and they made no difference. Every test that was performed always come back negative and yet in all these years I have never felt relief.
I changed gynecologist and again all the tests came back negative. I tried antihistamines and symptoms remained the same, so it's not an allergy. The doctor then put me on Diflucan and Lotrisone in case it's some kind of topical fungus but I have seen no major improvements. I have also tried vinegar baths, gentian violet, changing my diet, everything I can think of and I still feel the same. What frustrates me the most is that no one has been able to diagnose me with anything and yet I'm not well. I'm so tired of feeling this way. This condition has made me isolate myself. I always feel awkward, uncomfortable, different. I can't even remember what it feels like to be healthy. And of course, it has been a huge obstacle in my relationships.
If anyone has any information or has suffered something similar I would greatly appreciate any insight.
Thanks!

 
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Old 08-22-2008, 07:00 AM   #2
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Re: mystery vaginal condition

Hi, mayriv8409.

I'm sorry to hear you are dealing with so much pain and trouble.

Have you seen a vulvar specialist? There aren't too many of the out there, but it definitely sounds like it's time for you to find one. That's a gynecologist or sometimes a dermatologist who's had extra study in that particular part of the body.

You might have a condition called vulvar vestibulitis, I have that. Look it up, ask me if you have any questions.

Do you practice vagina-friendly hygiene? No chemicals touch the vulva, ever, including soap and spermicide? Wear only white cotton underwear washed in hypoallergenic detergent with no bleach or fabric softener?

 
Old 08-22-2008, 08:02 AM   #3
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Unhappy Re: mystery vaginal condition

I have the exact same thing! I was diagnosed with a yeast infection a few months ago after finishing antibiotics. My doctor prescribed Diflucan, and after taking one pill, the symptoms seemed to get better. Then, it came back, so i took it again, and it is still bothering me! My whole vaginal area is red and burns and itches like crazy!!! I can't get any relief! My inner labia are also red and a little swollen, and it burns when i pee! I don't get it! How many more times can Diflucan be repeated???? I have thought about getting a 3 day cream to see if that would help, but i'm at my wits end!!!!
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Old 08-22-2008, 09:20 AM   #4
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Re: mystery vaginal condition

Some yeast are resistant to diflucan. Try to get a fungal culture to see if they can identify a yeast strain and then figure out what would work. Most are albicans and would be helped by diflucan but some are not. A reg. culture for yeast won't tell you which strain.

Also see if you can test for trichomonas which also causes itching.

Also mobiluncas.

I read these in the V book by Elizabeth Stuart.

Alexis

Quote:
Originally Posted by kellis View Post
I have the exact same thing! I was diagnosed with a yeast infection a few months ago after finishing antibiotics. My doctor prescribed Diflucan, and after taking one pill, the symptoms seemed to get better. Then, it came back, so i took it again, and it is still bothering me! My whole vaginal area is red and burns and itches like crazy!!! I can't get any relief! My inner labia are also red and a little swollen, and it burns when i pee! I don't get it! How many more times can Diflucan be repeated???? I have thought about getting a 3 day cream to see if that would help, but i'm at my wits end!!!!

 
Old 08-22-2008, 11:06 AM   #5
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Re: mystery vaginal condition

I have been dealing with the exact same thing as you for the last 4 years. I am so relieved that you have posted this. I tried once before on here to see if anyone had the same symtoms as me but never found anyone. Mine started 4 years ago when I was pregnant with my son (3rd baby) I thought I had a yeast infection...they tested me for everything possible and everything came back fine. I have seen numerous drs and no one can tell me what is wrong...I have had so many prescriptions (that dont work) right now I am on Hydroxyzine but I have just started to take them and really havent noticed an improvement yet. I have an appointment to see a dermatoligist next week to see if they can tell me what is going on.

 
Old 08-23-2008, 03:30 PM   #6
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Re: mystery vaginal condition

I also have Vulvar Vestibulitis. It can feel like a bad yeast infection, but isn't. Jane, what treatments have you had? I'm going through a flare right now. I use Estrace cream, emu oil, have Acupuncture once a week, take Aveeno baths for the burning or sit on an icepack when the burning is really bad. I used Clobetasol ointment which is a steroid b/c I have Lichen Sclerosis and it relieved the burning well. I may have to use it again if this flare doesn't stop. Also, another Vulvodynia patient uses an herbal wash called Yin Care. I just ordered it. You dilute it with water and spray it on your vulva after urinating.

 
Old 08-23-2008, 08:18 PM   #7
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Re: mystery vaginal condition

Hi, Sunshine123.

Mine isn't too bad, thank Heaven. It only hurts during or after "contact," such as sex or tampon usage.

I take a drug called nortriptyline, I religiously protect my vulva from irritating chemicals, and I use a lidocaine gel before intercourse. The gel blocks the pain to the point where I can actually enjoy sex! (Ladies, if you use lidocaine, your partner has to wear a condom, or else he will also go numb.)

I'm thinking of asking to try either an estrogen treatment or an antihistamine treatment, because I think mine has a lot to do with skin irritation.

 
Old 08-23-2008, 09:02 PM   #8
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Re: mystery vaginal condition

Jane Tri-est is a cream estrogen treatment, you can get it at a pharmacy that make these creams, but a doctor has to prescribe it to there after you find the pharmacy.

 
Old 08-24-2008, 01:00 PM   #9
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Re: mystery vaginal condition

Thank you so much for those replies! It is such a huge relief to know that I'm not the only one suffering these symptoms seemingly without a cause. I was starting to feel so alone.

Janewhite1: I have never heard of a vulvar specialist but I'm definitely going to look for one because whatever I have is not internal and the doctors I've seen have not been able to help me. I have been paying extra attention to my hygiene (I only use a mild intimate soap my doctor prescribed) and I'm using only hypoallergenic detergents to wash clothes. So I don't think it's a reaction to chemicals.

For those who have vulvar vestibulitis, how is it diagnosed? My doctor said that it could be vulvodynia but sort of left it at that. She just gave me more Diflucan and put me on antihistamines, both which are not working.
She did mention that she had a patient who had the same symptoms as me that she referred to an oncologist-gynecologist and that he successfully cured her with antidepressants. But there was never a diagnosis. I guess if nothing else works I'll go to that doctor.
However, I think this is somehow yeast related, even if it doesn't show on the tests. I've noticed it gets worse when I get my period, as is the case now. I'm guessing the extra moisture worsens it. Just in case, I just started one of those anti-yeast diets to see if that helps.
I'm just tired of living like this!! And I hate not knowing what is causing all this pain and discomfort.

Thanks to everyone, it's been really helpful. I guess in situations like these we just have to keep trying new things until something ends up working.

 
Old 08-24-2008, 01:05 PM   #10
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Re: mystery vaginal condition

Kellis: I've taken Diflucan plenty of times. It's usually the first impulse doctors have with me. From what I understand, sometimes patients need to take it over a longer period of time to make sure the infection is cured completely. But I imagine that taking it too often makes it ineffective. Ask your doctor if you should repeat the dosage.

Last edited by mayriv8409; 08-24-2008 at 01:07 PM. Reason: I wasn't specific

 
Old 08-24-2008, 02:12 PM   #11
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Re: mystery vaginal condition

Drs. diagnose Vestibulitis with a "Q-tip" test. He or she touches various places on the Vestibule to elicit pain. I almost flew off the table when the Gyno did that. It hurt really badlly. A lot of Drs. though don't know what Vestibulitis or Vulvodynia is and/or don't know how to treat it. I've researched it myself and usually know more than the Dr. I see about it. Unfortunately, I don't handle anti-depressants too well, but others have found pain relief while using them. I thought I had a yeast infection too, but it wasn't. Anyway, I hope you find relief with whatever treatment you try.

 
Old 08-24-2008, 05:29 PM   #12
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Re: mystery vaginal condition

I also had the q-tip test. The doctor told me it was a q-tip, showed me it, then touched the particular spots on my vulva, and I asked him if he had replaced the q-tip with a red-hot needle, that was how much it hurt!

So, yeah. Vulvar specialist. There are a number of treatments that work, including surgery, in carefully selected cases that don't respond to other treatments. You might have to try a few before finding one that helps you, a good vulvar specialist might be able to make an educated guess at the best treatment based on your history.

 
Old 08-24-2008, 09:09 PM   #13
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Re: mystery vaginal condition

I dont have that kind of pain...for me it is just the worste itch ever and never really seems to have a reason, it can happen day or night...be there then I am fine...then its back a few hours later. I did see a specialist who did an endometrial ablation (not for this)...so while I was there we talked about this issue as well and he did say it could be Lichen Sclerosis and prescribed me some cream...which never works, I get temporary relief but I want some one to tell me exactly what I have so I know if I have to live like this for ever using creams or if they just havent diagnosed me properly there for cant cure me. I stopped taking my Hydroxyzine because it was making me sleepy (I take other medication as well and between the two I was getting way to sleepy)

I looked up the Lichen Sclerosis and it didnt seem like that was what I have...so hopefully when I see the dermatoligist on wed they figure this out.

 
Old 08-24-2008, 10:32 PM   #14
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Re: mystery vaginal condition

I was diagnosed with Lichen Sclerosis years ago by a biopsy. The weird thing is that I've never had much itching, just that awful burning. A couple of years ago, the burning was so bad that I couldn't take it anymore, so I got some Clobetasol ointment from the Dermatologist and used it for several months. It relieved the burning and I haven't had bad burning since. Good luck with the Dermatologist and please post after your appt.

 
Old 08-25-2008, 11:57 AM   #15
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Re: mystery vaginal condition

hey everyone! After just about going insane with itching and irritation, I bought Monistat 1 (the ovule insert) and it also came with cream for the outside! I used it as a last resort not knowing how or if it would work! Well, it's been 3 days and I finally have relief of all of my symptoms!!! The first day, I could not tell much difference. But by the second day, I felt completely back to normal!! I guess the Diflucan just wasn't enough to quite take care of it. I am still going to talk to my doctor at my next appointment to make sure there is no underlying problem, but so far, so good!
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Last edited by kellis; 08-25-2008 at 11:59 AM.

 
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