Vulvodynia Support
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» Hope to all my suffering ladies
out of ideas EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
out of ideas EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
out of ideas EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
out of ideas EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
out of ideas EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
out of ideas EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
out of ideas EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
out of ideas 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!
out of ideas 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


out of ideas

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Post  cremeans24 Mon Jun 30, 2014 9:57 pm

Hi there,

I found out while I was pregnant with my son about having vulvodynia. I always had trouble having sex but couldn't ever figure out why and it wasn't and still isn't anything I feel like I can talk to any one about. All I am ever told is that I just have a low pain tolerance and nothing is wrong because all test came back normal. In 2012 I got married to my husband after being together for a year and to this day we still have a little bit of issues because we didn't know what was going on but I didn't like sex at all I mean who would like pain that made you cry and so we were surprised when I got pregnant because we hadn't been really trying and not having regular sex but it was a really happy time for us and my son was born on June 13th of this year he is perfect but now I wonder where we go from here. About half way through my pregnancy we stopped being intimate because it hurt me so bad and I have had a history with depression and boy is it back now. I'm working with my OBGYN once i reach the 6 week mark to see if I can get back to a more normal intimate life with my husband, I guess what I"m trying to find out is did anyone else feel like less than a normal woman or am i just plain crazy. but i feel like I don't know what to do and I know my husband doesn't fully understand what I am going through and I'm just trying to find a way to feel better about myself and have people to talk to that understand and can help me through this time as i have no one in my life i feel i can talk to about this that won't essentially make fun of me.

cremeans24

Posts : 5
Join date : 2014-06-30
Age : 34

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Post  Alana3 Tue Jul 01, 2014 2:47 pm

Did you have your baby yet or are you still pregnant?

Alana3

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Post  cremeans24 Tue Jul 01, 2014 4:41 pm

Yeah my baby was born on june 13th. Overall once i had the epidural the birth was not as bad as the doctors thought but i did tear pretty bad and had to get more meds so i couldn't feel them stitching me back up. I couldn't get out of bed that first 24 hours on my own though they think that was the meds. But i will say the discomfort after birth was pretty bad and is just starting to lessen after two weeks but if i move too much i feel it.

cremeans24

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Age : 34

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Post  Alana3 Tue Jul 01, 2014 4:56 pm

Supposedly after a vaginal birth (and the recovery), your vulvodynia becomes less intense.  Maybe wait and see what happens after?  Where exactly does it hurt? And is it all the time or just upon penetration?

Alana3

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Post  cremeans24 Tue Jul 01, 2014 5:02 pm

Its only ever been during sex, or exams it is why i never really knew there could be something wrong because i had heard that for some women sex was always painful and i never had any abnormal results, utis or infections no stds so i just thought it was normal because no one had answers for me and i had never heard of vulvodynia before

cremeans24

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Age : 34

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Post  Alana3 Tue Jul 01, 2014 5:33 pm

It sounds like you have provoked vulvodynia, like me.  Basically meaning that the only time you have pain is when you have sex.  And only in one spot.  I would go to a specialist and not your obgyn as their primary focus is babies and not really problems.  The good news is you can be fixed but you're going to be doing process of elimination- creams, pills, etc.  I had the surgery back in December 2012 called a vestibulectomy, but this is a last resort surgery and pretty much ONLY for provoked vulvodynia.  But they are going to want to try a less invasive treatment before they come to that.  You can also try women's physical therapy and see if it helps.  Some people claim acupuncture works.  But my best advice is to see a specialist who works closely with vulvodyna.  Where do you live now? 

Alana3

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Post  cremeans24 Tue Jul 01, 2014 6:29 pm

I live in michigan, and the obgyn only caught it after i went to her for being pregnant so im less than a year into this and couldnt do treatment while i was pregnant so i am just trying to figure this out as i go with help from someone who understands what i feel and i can stop feeling so hopeless

cremeans24

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Age : 34

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Post  Alana3 Tue Jul 01, 2014 7:17 pm

Don't lose hope I suffered for about 7 or 8 years before I got my fix so totally understand.  Maybe try someone at the University of Michigan if you're close or if there's a Cleveland Clinic near by you could try them- I just went to the one down here in Florida for a second opinion on something irrelevant to vulvodynia, and they were great!  Keep in mind that this isn't a disease no one knows about, it's just difficult to find a doctor who's not an idiot.  I would google vulvodynia specialists + Michigan and see what comes up.  I actually did it and I saw there was a vulvodynia clinic! (see below) maybe go that avenue!  Very Happy 


https://www.google.com/?gws_rd=ssl#q=vulvodynia+specialists+%2B+Michigan+

Alana3

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Post  cremeans24 Tue Jul 01, 2014 9:11 pm

Thank you that helps

cremeans24

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Post  Alana3 Wed Jul 02, 2014 1:38 pm

No problem- let me know what you decide to do Smile But when you're calling around make sure they put some kind of emphasis on the vulva! I can show you my doctors website so you can get an idea

http://www.jaytrabinmd.com/home.html

Notice how vulvodynia is the first thing you see on the page.  My doc took a special interest in it and he's been my lifesaver!

Alana3

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