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» 7 months since the diagnosis
Vulvodynia is a secret  EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Vulvodynia is a secret  EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Vulvodynia is a secret  EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Vulvodynia is a secret  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!
Vulvodynia is a secret  EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

» Vestibulectomy next week in London!! - questions!!
Vulvodynia is a secret  EmptyWed Apr 24, 2019 8:32 pm by HedvigB

» Dating with Vulvodynia and Vaginismus advice
Vulvodynia is a secret  EmptyFri Apr 19, 2019 10:25 pm by Tartufo

» Research Participants Needed!
Vulvodynia is a secret  EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

» Does anyone else have Endometriosis?
Vulvodynia is a secret  EmptyMon Apr 08, 2019 7:54 am by Jo44

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


Vulvodynia is a secret

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Vulvodynia is a secret  Empty Vulvodynia is a secret

Post  Hopeitworks on Sat Aug 05, 2017 8:25 pm

Hello everyone,
Vulvodynia is my secret because how do you tell friends and family. I can't picture going to lunch with friends and just blurting out "my V burns all day". I can imagine the looks I may get. The only people I've ever told are the many doctors I've seen, my husband, and you all. It's not like I can walk into a meeting at work and say today's a bad day my V hurts. Like you can do with a headache. I recently had vesectobltmy surgery and had to lie about what kind of surgery I was having to my work. I don't like to lie, but what other choice did I have. The stigma that comes with any type of symptom that involves burning of V equals infection in most people's minds. This is why thus condition makes us feel so alone and worthless. Please share your comments about telling others.

Hopeitworks

Posts : 36
Join date : 2017-08-01
Location : United States

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Vulvodynia is a secret  Empty Re: Vulvodynia is a secret

Post  tinkerbelle2 on Sat Sep 16, 2017 1:22 pm

I know exactly what you mean! It's not the kind of thing you feel you can casually just drop into a conversation. I have told a few close friends about it and they have been empathetic but it can still be a bit awkward. A couple of them have even had a similar thing, but theirs usually went away on it's own. I feel like I don't really wanna bring it up again and be like "you know that thing I told you I had years ago? well , I've still got it!!" I think it's a difficult thing for people to advise you on or even offer words of encouragement if they don't relate or understand it themselves. But sometimes even just being there to listen can be enough.
tinkerbelle2
tinkerbelle2

Posts : 302
Join date : 2013-09-28
Age : 27
Location : Brighton, England, UK.

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Post  aspaceodyssey on Fri Jan 19, 2018 5:03 pm

absolutely. it is such a lonely condition and that makes it all the more difficult. but know that you are never alone. there are many of us out there dealing with the same and we all have your back in spirit, even if we sadly can't be there in person. most people in my life including my parents have no clue that I've been dealing with this for almost 15 years now...crazy. but I have a supportive partner and a couple close friends who do know and that's all you need. I recently contributed to a book that included women's personal experiences of vulvodynia as well and talked about the lonely, isolating side of this journey. it was scary to even write about it anonymously, but so cathartic, and I felt proud knowing my words might help others like us feel less alone. I'm not sure if the book was published yet...now I want to follow up with the author and find out!

aspaceodyssey

Posts : 30
Join date : 2013-12-09

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Vulvodynia is a secret  Empty Re: Vulvodynia is a secret

Post  ryn207 on Sat Jan 20, 2018 1:59 am

I totally know what you mean. I'm lucky to have some friends, family, and a boyfriend that I can talk to, but I do feel like I'm being a downer sometimes. I'm an open book when it comes to a lot of things so while I felt I could tell those that I'm close with, it still feels a bit awkward. They're sympathetic, but they can't imagine what it's like so they typically don't know how to respond after a minute or two into the discussion. Most aren't comfortable with asking questions so you're the one that has to always bring it up if you want to vent which makes you feel like a bother. I might go months without speaking about it to friends (even though I feel the symptoms everyday) so when I do bring it up it's like they forgot I even have this and can't believe I'm still in pain! They're always shocked because they've also never heard of something like this.

You should definitely keep using this website since it's filled with women who know exactly what you're going through. Everyone needs to vent at some point in order to stay sane.

ryn207

Posts : 22
Join date : 2018-01-11

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Post  fairlight10 on Sat Jan 20, 2018 11:45 am

This forum is so valuable for women with this condition. We can all speak openly without being embarassed. When I found this forum, I didn't feel so alone.

fairlight10

Posts : 72
Join date : 2016-04-17

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