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» I don't know what to do anymore
Sat May 26, 2018 5:21 pm by Aquaben

» Social Security Disability Benefits
Tue May 22, 2018 7:22 pm by SinclairSassy

» Cleveland Clinic - Pain Management, Weston, FL
Tue May 22, 2018 7:13 pm by SinclairSassy

» Finally found a place for me...
Mon May 21, 2018 4:08 am by mtsp

» UK Vulvodynia Clinics
Sun May 20, 2018 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

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.

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What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 5

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14


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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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 on 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

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Re: 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  Alana3 on 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!

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Re: 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 on 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.

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Re: 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  Alana3 on 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?

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Re: 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 on 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.

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Re: 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  Alana3 on 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

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Re: 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 on 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.

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Re: 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  Alana3 on Sun Nov 24, 2013 7:02 pm

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

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Re: 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 on 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.

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Re: 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  Alana3 on 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

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PFD

Post  denisefeil on 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

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Re: 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  Alana3 on Wed May 14, 2014 1:01 pm

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

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Re: 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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