Vulvodynia Support
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» Hope to all my suffering ladies
does this sound like vulvodynia? please read! EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
does this sound like vulvodynia? please read! EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
does this sound like vulvodynia? please read! EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
does this sound like vulvodynia? please read! EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
does this sound like vulvodynia? please read! EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
does this sound like vulvodynia? please read! EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
does this sound like vulvodynia? please read! EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
does this sound like vulvodynia? please read! 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!
does this sound like vulvodynia? please read! 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


does this sound like vulvodynia? please read!

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Post  LegendOfAspen Mon May 16, 2016 9:28 am

hello everyone, i have known this forum for a while, and all you ladies seem super nice and not judgmental, which is why i have come here. i will try to keep this as short as possible, but i have no access to a gyno as of right now, and my anxiety is killing me because of this, so if anyone can help, that is greatly appreciated. i have had these symptoms for over almost a year now, although the pain has gone down significantly. it started right after a birth control pill i started when i was 18 in may of 2015. i had this intense burning down there as well as dryness. long story short, i was misdiagnosed twice and my gyno didn't help at all. i stopped the birth control by myself and immediately felt improvement, however, it has never fully gone away. i recently had sex with my boyfriend, which was painfree 98% of the time actually. my current symptoms are: slight irritation on the vulva, dryness, pasty white discharge, an odd smell (not that bad really, not like fish), and burning with urination. i can touch my vulva and apply pressure with no pain, but i don't get wet like a normal 19 year old would. i don't wanna be in discomfort for the rest of my life and i'm up at 5:30am having an anxiety attack about this. does this sound like vulvodynia or something else? i just have the irritation and slight burning so i automatically thought of vulvodynia since i was told no other vaginal infection causes burning. any feedback is SO appreciated, thank you lovelies.

LegendOfAspen

Posts : 4
Join date : 2015-08-11

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Post  emalita Mon May 16, 2016 2:22 pm

Hi!

I'm sorry to hear you're in pain and that you don't have access to the care you need.

Vulvodynia isn't a single disease/condition for everyone. Vulvodynia is a diagnosis based off of elimination of other conditions (e.g. yeast, BV, STDs, etc.), and when a doctor cannot find a cause for the pain, they may diagnose vulvodynia, which is simply chronic vulvar pain without a known cause. Basically they are telling you that you're in pain, but they don't know why.

Personally for me, all of my tests came back normal until I went to a vulvovaginal specialist who developed his own testing method using a higher powered microscope (he has published studies acknowledging these new tests). He diagnosed me with a very bad case of inflammatory vaginitis (IV not DIV). He was the first vulvar specialist who didn't just assume all unexplained vulvar pain was nerve related, which is the answer I've gotten from two other specialists who I wanted to slap. And he didn't tell me all my pain was caused by unresolved sexual issues either (I hate doctors sometimes). Don't get me wrong, there are women whose pain is caused by overactive/damaged nerves or mental trauma from sexual abuse, but that's not my case.

Trust me, there are plenty of vaginal conditions that cause burning besides the typical yeast, BV, and STD. I know this isn't what you want to hear, but you should really be seen by a vulvovaginal specialist who is used to seeing nonstandard disorders. That is the only way you will find any peace from your anxiety...trust me, I've been there.

Hang in there. You can get to the bottom of this Smile

emalita

Posts : 249
Join date : 2016-03-29
Location : USA

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