Vulvodynia Support
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» Hope to all my suffering ladies
New to forum, seeking advice and referrals EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
New to forum, seeking advice and referrals EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
New to forum, seeking advice and referrals EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
New to forum, seeking advice and referrals EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
New to forum, seeking advice and referrals EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
New to forum, seeking advice and referrals EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
New to forum, seeking advice and referrals EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
New to forum, seeking advice and referrals EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
New to forum, seeking advice and referrals EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

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.

Comments: 2

Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

Comments: 11

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

Comments: 0

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 3

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3


New to forum, seeking advice and referrals

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Post  dandelion18 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?

dandelion18

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Post  Alana3 Thu Aug 01, 2013 5:07 pm

Dr trabin in florida is awesome

Alana3

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Post  dandelion18 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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Post  Alana3 Thu Aug 01, 2013 10:52 pm

Dr Goldstein in New York I think is where he is

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Post  dandelion18 Fri Aug 02, 2013 12:01 am

Thanks again! Anyone else had similar problems with exams?

dandelion18

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Post  Alana3 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!

Alana3

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Post  dandelion18 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?

dandelion18

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Post  Alana3 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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Post  dandelion18 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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Post  Alana3 Fri Aug 02, 2013 11:19 pm

So why would they do a biopsy for that?

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Post  Sarah001 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
Sarah001
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Post  dandelion18 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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Post  Alana3 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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Post  LalaYe 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.

LalaYe

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Post  Alana3 Thu Aug 15, 2013 3:38 am

Where are youfrom?

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