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» 7 months since the diagnosis
MUST READ- ALL MEMBERS EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
MUST READ- ALL MEMBERS EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
MUST READ- ALL MEMBERS EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
MUST READ- ALL MEMBERS 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!
MUST READ- ALL MEMBERS EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

» Vestibulectomy next week in London!! - questions!!
MUST READ- ALL MEMBERS EmptyWed Apr 24, 2019 8:32 pm by HedvigB

» Dating with Vulvodynia and Vaginismus advice
MUST READ- ALL MEMBERS EmptyFri Apr 19, 2019 10:25 pm by Tartufo

» Research Participants Needed!
MUST READ- ALL MEMBERS EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

» Does anyone else have Endometriosis?
MUST READ- ALL MEMBERS 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


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Post  sadone on Sun Jan 17, 2016 4:12 pm

Please Please watch this piece on youtube and flood the comment section. The anchor on this program has a despicable reaction to vulvodynia. Share with any groups. Let's get this youtube removed.

https://www.youtube.com/watch?v=e9EL0G58OP8

sadone

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MUST READ- ALL MEMBERS Empty PLEASE respond

Post  sadone on Tue Jan 26, 2016 12:34 am

We need to take action. contact the nva. www.nva.org. let them know that you want this youtube removed. i worry that it is going to make women with V despondent. Please take action. We only have each other.

We have to advocate for ourselves. Personally, I was devastated by the video. But it is inaccurate and insensitive.

If we don't advocate for ourselves, then nothing will happen to help us.

https://www.youtube.com/watch?v=e9EL0G58OP8

If this vid causes one suicide, we only have ourselves to blame for not acting.

PLEASE....


sadone

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Post  meelie on Tue Feb 02, 2016 3:22 pm

I disagree. I think that there should be more media coverage of this horrid curse. Maybe if there were more on it and the world learned that it exists there will be more work done to fix it. I don't think any one with this curse could get anymore despondent that they already are. In fact it makes me feel a little better about it that my curse is being talked about in the real world and that now maybe people will believe me when I have the courage to come out and tell someone about it. I have people who roll their eyes or otherwise acts like they think it's made up or all in my head. So I am glad it is out and should be out more. "coming out" is the only way to get things done. Letting the rest of the world know what is happening is the only way to changes made. Maybe it will get more doctors to do research so more of us can get help in our home towns instead of having to travel hours to someone claiming to know about. Those are my thoughts.

meelie

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MUST READ- ALL MEMBERS Empty Thank you

Post  sadone on Sat Feb 27, 2016 6:35 am

Thanks, Meelie for your reply. I agree that it should be talked about. What I didn't like about the video was the guy saying that he would not date someone with V and ninety nine percent of guys wouldn't either. And that he had no advice to offer.

That was insulting. And the comments were horrendous. People were making fun of the condition.


That was the part that was cruel and showed no empathy. Anyway, it drove me over the edge. I had to make an appointment with my therapist after seeing it. It really upset me terribly. I worry that I will be alone forever bc of this. And after a break up with my bf this made me feel like giving up on life even more.

Anyway, I wrote to TYT and my therapist is going to do the same. Just talking about it now is making me really upset. Sad already I am having suicide ideation... this youtube made me worse.

sadone

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