Vulvodynia Support
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» Hope to all my suffering ladies
Fuck this disorder.  EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Fuck this disorder.  EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Fuck this disorder.  EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Fuck this disorder.  EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Fuck this disorder.  EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Fuck this disorder.  EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Fuck this disorder.  EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Fuck this disorder.  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!
Fuck this disorder.  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


Fuck this disorder.

+3
WaahwaahUK
Ouch123
meelie
7 posters

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Fuck this disorder.  Empty Fuck this disorder.

Post  meelie Sat Aug 29, 2015 2:25 am

Fuck this disorder. Death would be better.

meelie

Posts : 136
Join date : 2013-01-09
Location : Barnesville, Ga

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Fuck this disorder.  Empty Re: Fuck this disorder.

Post  Ouch123 Sun Aug 30, 2015 12:44 am

I get it!!! I have actually had the thought !

If i cant have a relationship and i have to live with chronic burning oain in the most intimate possible area... Whats the effing point!

No worries.... Im not truly on the edge... But WTF

Ouch123

Posts : 19
Join date : 2015-08-29

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Post  meelie Sun Aug 30, 2015 2:53 pm

I just missed my 50th, yes 50th highschool reunion last night because of this damn burning. I will never ever see these people again. I'm not young as you can see. I guess that is a plus, it means I won't have to live like this for as long as some of you poor girls. I've had mine for 3 years status post pelvic fracture/trauma. I just get sick thinking that my last days on this earth are going to be so miserable. I've done PT, I'm doing yoga and Amy Steins exercises. Still there. Has ruins my relationship with my husband of 48 years. Oh, he's not leaving me, too many years under the bridge, but we are not close anymore, it's like he is afraid to be close to me physically and emotionally. That really sucks. I feel so so freaking alone. You girls are the only ones who can understand. It's just too embarrasing to talk about to people.

meelie

Posts : 136
Join date : 2013-01-09
Location : Barnesville, Ga

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Post  WaahwaahUK Sun Aug 30, 2015 3:48 pm

Sometimes I read posts and don't know what to say so I say nothing. But I know how lonely this pain makes people feel, so just wanted to say I hear you.

WaahwaahUK

Posts : 117
Join date : 2015-07-31

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Post  meelie Sun Aug 30, 2015 3:58 pm

Thanks. I guess I just the end of rope with patience. Thanks for listening.

meelie

Posts : 136
Join date : 2013-01-09
Location : Barnesville, Ga

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Post  Ouch123 Mon Aug 31, 2015 1:06 am

I have been thinking a lot today about the ladies on this forum. How can this be a real thing!!!!!!

I am new to the vulvodynia diagnosis, so am still working through my anger, denial, depression etc. I keep thinking about the diagnosis. At first I was so happy to have a diagnosis, I thought "now I have something to treat". All vulvodynia is is a word for "it hurts and no one can figure out why". I knew that before I got the label.

I have a very new relationship with someone I feel I could really make it work with. It wont go anywhere. We just cant really develop any real intimacy. I have been alone for years and was sooooo hopeful.


Ouch123

Posts : 19
Join date : 2015-08-29

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Post  meelie Mon Aug 31, 2015 2:07 pm

I know what you are feeling. All our intimacy is gone. No one can understand. I took two tramadol yesterday and it helped but I will run out of my dogs pain meds soon and then am I going to do? I only take them when it gets so bad I want to die.

meelie

Posts : 136
Join date : 2013-01-09
Location : Barnesville, Ga

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Post  sgw11 Tue Sep 01, 2015 12:20 pm

As a 22 year old woman who is meant to be young and free and enjoying exploring her sexuality. FUCK. THIS. DISORDER.

sgw11

Posts : 46
Join date : 2015-02-18

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Post  meelie Tue Sep 01, 2015 12:36 pm

I still say if it was acid on a man's penis someone would have done something about this before now. We need someone in congress to fight for research. We need to be squeaky wheel and start making noise. That is the only way anyone gets anywhere in this country. Look at all the stuff different "groups" have gotten in this country. It wasn't by being quiet and saying whoa is me. They are loud and they are unrelenting. That is what we need to be heard. Wish I knew how to get it started. It's just that this thing is so dam embarrasing. I'm going to see my interness this morning and I DREAD this conversation because i know I am going to break down and cry like I always do and he's going to think I'm an idiot.

meelie

Posts : 136
Join date : 2013-01-09
Location : Barnesville, Ga

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Post  BpCookie Mon Sep 14, 2015 3:23 pm

Hello Ladies, I totally understand!!! I was so depressed at first because all those pills, ointments, creams, lotions, procedures.....didn't work. Then the anger came. I wanted to blame the entire world. Then I turned that anger into determination. I did research so that I would know what I was talking about when I talked to Dr.s. I finally found a great Dr. who really improved my pain issues but I still needed more help. Then this wonderful Dr. retires. I was devastated!!! But he gave me a referral to see another Dr. and I can already tell that he is totally lost when it comes to this. He isn't anything like my other Dr. who's techniques were way far advanced. I have a terrible feeling that this guy is going to throw more gels, creams, lotions, ointments........at me. I feel like I'm starting all over again.
BpCookie
BpCookie

Posts : 209
Join date : 2012-01-25
Location : Arizona

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Post  kell Fri May 13, 2016 6:14 pm

Hi, I just joined and I could not agree more - Fuck This Disorder. No

Why me, is all I think. And yet I'm sure my husband thinks its just because "I don't want to." Couldn't be further from the truth.

kell

Posts : 8
Join date : 2016-05-13

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Fuck this disorder.  Empty Fuck This Disorder

Post  let's kick this Tue May 24, 2016 12:14 am

I totally agree why can't these doctors help us FUCK No No

let's kick this

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

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