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Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 19

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 1

New member

Sat Mar 18, 2017 7:37 pm by Lisa1627

Hi ladies. I am new to the forum. I have had what I think is vulvodynia caused from hsv 2. So not only do I have the burning vag but the constant feeling of being contagious. I can honestly say that I hate my life and myself right now. There are days when I think I would rather be dead. I tried the amitryptline and it helped but if it's only making my brain think I don't have pain then it's …

Comments: 12

Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 3

Recovered from Vulvodynia

Thu May 04, 2017 9:42 pm by chancesunny

Hey everyone,

Im a new member on this forum and wanted to share my story so I can help anyone who is feeling helpless. Maybe what worked for me can work for you. I'll try to make this short so you can go get better!

I had vulvodynia for about 3-4 years. In the beginning, it started with pain that I thought was just a yeast infection and then I thought it was a urinary tract infection or …

Comments: 2

New here, my story and looking for advice

Wed Apr 26, 2017 9:02 am by rachiecakes

Hi All!

I was really hoping to get some feedback from everyone here - it's very hard dealing with an issue like this because no one really understands what I'm going through!

Im 28 years old I've had interstitial cystitis for 3 years - but never an vaginal issues. About 6 months ago I got a yeast infection following a course of antibiotics - similarly I developed IC after a bad UTI. The itching …

Comments: 4

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 2

Male visitor

Wed Jan 18, 2017 11:19 pm by outsider

Hello!

I am a 25 year old guy who has erectile dysfunction following an injury a few years ago. I am here because I think that men and women with sexual dysfunction could benefit from dating each other. My experience has been that women have lost interest when they found out that penetrative sex was not possible with me.
So I am interested in learning more about female sexual disorders. Do young …

Comments: 3

New Here: Question/My Story

Mon Apr 03, 2017 2:00 am by overit14

Hi everyone. I came across this site by Googling "vulvar pain support". I feel like my case is different than most I read about so I was wondering if anyone else here experiences this in the way that I do.

This started in 2012 and has happened off and on since. I get really, really red and it's very painful, swollen and burns. Sometimes it may be a little itchy, but mostly it just …

Comments: 6


Duration of Medicating Oneself

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Duration of Medicating Oneself

Post  noni on Sat Jun 18, 2011 12:03 pm

Hello Ladies,

This has been on my mind for quite some time. I know meds arent for everyone...but for those of us taking medication for this crap condition: How long are we to be on the meds for ???

When I asked my "specialist" she said Oh most women are on them for six months then taper off...

Im not convinced. I have heard of women tapering off...but mainly women who required low doses to tame this pain.

There have been moments when I missed a dose of my meds and the pain came back and it was awful.

Those of us on meds...do we need to be on the meds for an indefinite period of time??? Im just terrified that when, one day, I will not want to rely on pills that my pain will come back in full force.

I feel like there is a lack of answers out there. The doctors dont know what they are doing. It just causes me additional anxiety and depression.

Take care girls

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Re: Duration of Medicating Oneself

Post  Sarah001 on Sat Jun 18, 2011 12:59 pm

This is something I was also told six months then taper off about but from what I've seen online there are very few women who can actually ever come off them once they are on them, unless of course they find out the source of their V and treat it at the same time as taking the meds. I've been taking meds for about a year for it now and I haven't even managed to get significant pain control yet. I think the ladies who only take meds for 6 months then come off them are ones who are genuine neuropathic pain which the meds work very well for and calm down the pain signals whereas if there's some underlying cause like pelvic floor muscles etc obviously the meds don't work as well in the first place and nor do they stop the nerves misfiring so they don't get rid of the problem which of course means 6 months then taper off isn't going to happen.
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Re: Duration of Medicating Oneself

Post  noni on Sat Jun 18, 2011 1:13 pm

Yes Sarah I have also read that very few women have a smooth tapering off phase...theres withdrawl and also flare ups I have read about. I dont know anymore...
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Re: Duration of Medicating Oneself

Post  jules on Sat Jun 18, 2011 3:55 pm

I expect to be on them for the rest of my life. I have never been told i will be able to taper off after a certain period of time. I get a blood test to check my liver once a year. I'm like you Sarah, I haven't even gotten to the point where my pain is manageable. I also have read that the meds will work for a period of time. But, then we need to try a new med or adjust the levels.

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Re: Duration of Medicating Oneself

Post  noni on Sun Jun 19, 2011 3:07 am

Hey Jules

Yes thats what im anticipating...the need to medicate for the rest of my life and/or try new meds when current ones lose their effect.

Its just very sad for me to think this. Taking medication for the rest of my life, dealing with the side effects, not being able to wear jeans ever again, no bike riding...etc etc....sorry for the rant.

Thank you kind ladies for your input.
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Re: Duration of Medicating Oneself

Post  jules on Fri Jun 24, 2011 12:23 am

Maybe that won't be the case. We don't know what the future holds. I don't mind being on meds. But, it would be awesome to not have to rely on them. I am doing acupuncture w/ the hope that my pain decreases and maybe i can reduce my meds. No need to apologize. We all need to rant from time to time.

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Re: Duration of Medicating Oneself

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