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» I don't know what to do anymore
Yesterday at 5:05 am by SinclairSassy

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Tue May 22, 2018 7:22 pm by SinclairSassy

» Cleveland Clinic - Pain Management, Weston, FL
Tue May 22, 2018 7:13 pm by SinclairSassy

» Finally found a place for me...
Mon May 21, 2018 4:08 am by mtsp

» UK Vulvodynia Clinics
Sun May 20, 2018 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

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What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

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Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14


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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