Vulvodynia Support
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Vulvodynia Support

Does life feel like one huge pain in the Vulva??? I have created this forum so that women living with Vulvodynia (Vulva Pain) can have a place to share, chat and support each other.


The link to my research project is in the Announcements forum, please participate if you can!!
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» Hope to all my suffering ladies
Just when I thought I might be getting closer to a solution to my vulvodynia and pelvic floor dysfunction--IC reared its evil head EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Just when I thought I might be getting closer to a solution to my vulvodynia and pelvic floor dysfunction--IC reared its evil head EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Just when I thought I might be getting closer to a solution to my vulvodynia and pelvic floor dysfunction--IC reared its evil head EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Just when I thought I might be getting closer to a solution to my vulvodynia and pelvic floor dysfunction--IC reared its evil head EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Just when I thought I might be getting closer to a solution to my vulvodynia and pelvic floor dysfunction--IC reared its evil head EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Just when I thought I might be getting closer to a solution to my vulvodynia and pelvic floor dysfunction--IC reared its evil head EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Just when I thought I might be getting closer to a solution to my vulvodynia and pelvic floor dysfunction--IC reared its evil head EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Just when I thought I might be getting closer to a solution to my vulvodynia and pelvic floor dysfunction--IC reared its evil head 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!
Just when I thought I might be getting closer to a solution to my vulvodynia and pelvic floor dysfunction--IC reared its evil head 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


Just when I thought I might be getting closer to a solution to my vulvodynia and pelvic floor dysfunction--IC reared its evil head

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Vulvodynia Support :: Support and Advice

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Just when I thought I might be getting closer to a solution to my vulvodynia and pelvic floor dysfunction--IC reared its evil head Empty Just when I thought I might be getting closer to a solution to my vulvodynia and pelvic floor dysfunction--IC reared its evil head

Post  Fingerscrossed Sat Nov 23, 2013 5:52 am

I'm feeling really really frustrated right now and need to vent.

I started having lower right back pain last week and then my abdomen also began having issues last Thursday, along with the urge to urinate. I was tentatively diagnosed with a UTI by my university health center, but both of my urinalysis tests came back clear. The meds obviously didn't work and I continued to have pain/discomfort, so I had to go to the Pelvic Pain Center today to talk to Dr. McQuady. Looks like I have interstitial cystitis (IC). This is one of the worst pieces of news I could get--I'm a huge foodie, study the folklore of food, and I'm having a vestibulectomy on December 17th to help fix the vulvodynia. In March I was tested for IC and scored very high on the "PUF" test, but my potassium test was negative, so I thought I was in the clear. I am just so fed up with all of this. I've been dealing with it for four years and I just spent my 24th birthday on Tuesday in pain.

Anybody else dealing with the same thing? Still had a vestibulectomy even though you had IC and were able to have sex with your significant other?


Fingerscrossed

Posts : 25
Join date : 2013-09-17
Age : 34
Location : Kentucky

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Post  Alana3 Sat Nov 23, 2013 3:32 pm

I had a vestibulectomy and loved it but I dont have ic Sad thats horrible I'm so sorry... happy birthday tho mine was thursday!

Alana3

Posts : 1093
Join date : 2012-09-25

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Post  Fingerscrossed Sat Nov 23, 2013 10:30 pm

Thank you! I'm getting through it--my symptoms seem to be subsiding. I decided to follow the low-oxalate diet until the symptoms completely subside, and then I'll use the Prelief pills whenever I want to eat chocolate and citrus foods or drink tea. I just have no idea how this started now. I've been perfectly fine for months eating whatever I wanted. My stress levels also haven't changed--I'm in graduate school so I am always stressed.

Fingerscrossed

Posts : 25
Join date : 2013-09-17
Age : 34
Location : Kentucky

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Post  Alana3 Sat Nov 23, 2013 11:11 pm

Yeah they thought I had that too but I only have symptoms with very specific foods. When are you getting your surgery?

Alana3

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Post  Fingerscrossed Sun Nov 24, 2013 12:02 am

December 17. Less than a month now. Also, happy belated birthday to you! I don't know what triggered it--I'm just sticking to a safe diet until the issues go away and then I can add some good stuff in. I really want to eat the leftover chocolate fondue and strawberries in my refrigerator but I know I can't. It really sucks too because I love both of those things.

Fingerscrossed

Posts : 25
Join date : 2013-09-17
Age : 34
Location : Kentucky

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Post  Alana3 Sun Nov 24, 2013 1:50 am

Your surgery will be a breeze you'll love it! Where do you live? I'm at melting pot now haha Smile

Alana3

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Post  Fingerscrossed Sun Nov 24, 2013 6:58 pm

Bowling Green, KY. I have a two hour drive with an hour time change each trip I take to go to my doctor in Louisville. I'm doing graduate school.

Fingerscrossed

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Age : 34
Location : Kentucky

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Post  Alana3 Sun Nov 24, 2013 7:02 pm

Are you at western? I went to transy and uk haha

Alana3

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Post  Fingerscrossed Mon Nov 25, 2013 1:10 am

Yep. And of course I'm interested in food and culture. This issue is not turning out to be a good combination for me--I am proud of being a foodie.

Fingerscrossed

Posts : 25
Join date : 2013-09-17
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Location : Kentucky

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Post  Alana3 Mon Nov 25, 2013 1:51 am

Oh I hear you one hundred percent... omg hows ky I miss it Sad but seriously red wine kills my bladder :/ it sucks

Alana3

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Post  denisefeil Wed May 14, 2014 2:28 am

I am suffering with pelvic floor dissent. I live in the Washington DC area. I would greatly appreciate any help - I am constantly constipated and nauseous - I am at the end of my rope.

Thank you

denisefeil

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Post  Alana3 Wed May 14, 2014 1:01 pm

are you sure you don't have endometriosis?  I have that and have what you're describing.

Alana3

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