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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 …

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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 9

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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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: 4

Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

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: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1


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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