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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 6

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 1

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

Comments: 0

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 22


New to forum, seeking advice and referrals

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New to forum, seeking advice and referrals

Post  dandelion18 on Thu Aug 01, 2013 4:12 pm

Hi, I am new to this forum and am seeking any sort of advice on whether y'all think this might be vulvodynia. I was also wondering if there any any female OB/GYNS on the East Coast that you could recommend who are good at treating this. And if anyone knows anything about Dr. Harris or Dr. Coady at SoHo OB/GYN?

Several years ago, my OB/GYN suspected a yeast infection. When one round of antibiotics didn't work, she prescribed another. Yeast cultures always seem to test positive in office, but negative once they are sent to the lab. I have recurrent itching, pain, burning, and discharge. Sometimes a cream, medicine, or other treatment will help, but the symptoms always seem to return. In addition, pelvic exams are extremely painful for me.

I have just been to my third OB/GYN. I really liked her, but she said she wouldn't be able to treat me long term. I am getting concerned because it seems like I keep getting "dropped" by doctors. In addition, they only want to do pelvic exams under anesthesia. She also wants to do more biopsies (a past biopsy wasn't very helpful). What can you all suggest? Any doctor recommendations?

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Re: New to forum, seeking advice and referrals

Post  Alana3 on Thu Aug 01, 2013 5:07 pm

Dr trabin in florida is awesome

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Re: New to forum, seeking advice and referrals

Post  dandelion18 on Thu Aug 01, 2013 10:15 pm

Thanks! I guess that I should have mentioned that Florida is a bit far and any recommendations for the Northeast greatly appreciated...

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Re: New to forum, seeking advice and referrals

Post  Alana3 on Thu Aug 01, 2013 10:52 pm

Dr Goldstein in New York I think is where he is

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Re: New to forum, seeking advice and referrals

Post  dandelion18 on Fri Aug 02, 2013 12:01 am

Thanks again! Anyone else had similar problems with exams?

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Re: New to forum, seeking advice and referrals

Post  Alana3 on Fri Aug 02, 2013 11:55 am

Pretty much everyone here had the same problem. Hopefully she gave you anti fungal and not antibiotics for yeast as that wouldn't do much. I would get another opinion. I wouldn't stick to just female but who has enough experience. Women tend to try and compare I even had one tell me it wasn't that bad. Really? You wake up in pain everyday? I found male doctors take more time and most specialize. Go with experience not gender. At any rate, I'm "cured" now so but it took a while to get there If you have pvd surgery is an option and something I recommend. But again thats me so I don't know how you feel about it but I'm mostky better now. Just find a good doc!

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Re: New to forum, seeking advice and referrals

Post  dandelion18 on Fri Aug 02, 2013 8:33 pm

Thank you so much. Really appreciate your responsiveness ; ) I was given diflucan. Should I have been given something different?

I am mainly concerned as the doctor wants to do a repeat biopsy and says that Behcet's disease could also be a possibility. Not sure if that was also a diagnosis anyone else here was given... What is pvd?

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Re: New to forum, seeking advice and referrals

Post  Alana3 on Fri Aug 02, 2013 10:02 pm

Diflucan is an antifungal youre good! Provoked vulvodynia is pvd basically meaning your pain is obly there when its messed with. And usually only in a specific location. Does that sound like you? I have no idea what the other disease is but if you have already had the biopsy done I wouldn't go back thru it... google vulvar specialists in your area I had so many useless things done

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Re: New to forum, seeking advice and referrals

Post  dandelion18 on Fri Aug 02, 2013 10:41 pm

Oh, OK. Yeah, it is odd in the sense that sometimes it settles down and only bugs me when provoked, other times it seems spontaneous.

Behcet's is an autoimmune disease.

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Re: New to forum, seeking advice and referrals

Post  Alana3 on Fri Aug 02, 2013 11:19 pm

So why would they do a biopsy for that?

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Re: New to forum, seeking advice and referrals

Post  Sarah001 on Sat Aug 03, 2013 1:53 pm

I think I'd be a bit reluctant about the biopsy because Behcets can't be diagnosed by specific tests it's a diagnosis of exclusion so the biopsy won't say if you have it it just rules other things out which the first biopsy should already have done. Behcets was mentioned to me when I went to a small GU clinic but when I went a consultant at a larger one she said no Behcets would cause ulcers and the mouth is pretty much always affected too so I'd be very wary about that doctor and research Behcets before you go again so you're armed with some knowledge. Have a read at this link about symptoms:

http://www.nhs.uk/Conditions/Behcets-disease/Pages/Symptoms.aspx
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Re: New to forum, seeking advice and referrals

Post  dandelion18 on Sun Aug 04, 2013 4:22 pm

There was an ulcer that was noticed during exam, so I guess you do have to consider Behcet's as a possibility whenever that happens. I do also occasionally get canker sores in my mouth. But I also have to agree with you on the biopsy - not sure what it would show. Does this still sound like Behcet's? Aren't there other tests that could diagnose it? My thought is that it might be VBD or VVD as a yeast infection seemed to set this whole cycle off and it has never quite gotten back to baseline.

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Re: New to forum, seeking advice and referrals

Post  Alana3 on Mon Aug 05, 2013 1:40 am

I get canker sores all the time too could just be your immune system, allergies or stress levels

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Re: New to forum, seeking advice and referrals

Post  LalaYe on Thu Aug 15, 2013 3:26 am

Hi, I'm new too. I'm also on the east coast, and being in the similar situations as you in the past year. Long story short, I had been treated for yeast multiple times even when I had no yeast at all. I also had biopsy done because a doctor thought I had warts. I had been to many different doctors to confirm if it was really warts, they all said no. I finally had the biopsy ruled out the of warts. But I am still a little worried about the accuracy of the biopsy because my condition never got better. It only got worst. I don't think they are warts, but my skins are not smooth and have pain constantly. It wasn't like that before. It might be I had been treated for yeast and bacteria infection too much I don't know. Anyways, I'm still looking for the right doctor, keep in touch.

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Re: New to forum, seeking advice and referrals

Post  Alana3 on Thu Aug 15, 2013 3:38 am

Where are youfrom?

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Re: New to forum, seeking advice and referrals

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