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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


NEW YEAR, NEW DOCTOR, NEW OUTLOOK

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NEW YEAR, NEW DOCTOR, NEW OUTLOOK

Post  shay on Sun Jan 09, 2011 12:11 am

I HAVE RECENTLY SEEN A DOCTOR WHOSE SEEMS TO HAVE THE CARING AND PATIENT PERSONALITY THAT I NEED RIGHT NOW AND SHE HAS STARTED ME ON ELAVIL AT NIGHT TIME AND A COMPOUND CREAM MADE UP OF NERVE BLOCKING, MOISTURIZING AND PAIN NUMBING MEDICATIONS ALL IN ONE CREAM.

SO IM HOPING FOR THE BEST...............

P.S HOW DO I FIND THE FACEBOOK PAGE THE ONE THATS PRIVATE

shay

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Re: NEW YEAR, NEW DOCTOR, NEW OUTLOOK

Post  Mouse on Sun Jan 09, 2011 5:49 am

Hi Shay good luck with the new Doc, it sounds promising!

You need to send Sarah ie admin, your email address and she will add you Smile

Vicki

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nervous about side effects of ami

Post  shay on Sun Jan 09, 2011 7:50 pm

is it wierd for me to believe i will get better like im almost nervous to try this new treatment or maybe im afraid of it not working. Im seriously trying not to allowed my anxiety to overwhelm me because i believe that it is a mind over matter thing that requires faith.


idk.................. i started it last night and the cream didnt burn or irritate which is good and the little pill of ami only made me extremly sleep instantly and i know that weight gain is a side affect and i actually thought i can not gain weight however that quickly went out the window as a dumb moment lol like i would rather be 5000 pds and healthy versus my normal weight ( fingers crossed) .

is there any suggestion on how to keep the extra weight off

shay

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Re: NEW YEAR, NEW DOCTOR, NEW OUTLOOK

Post  Sebby (Admin) on Mon Jan 10, 2011 2:33 pm


Good luck with your new treatment Shay, I have messaged you back about the facebook group.

As for the weight, lots of exercise would be my advice..hard I know when you are dealing with pain. I find a good walk always does me good

I dont put weight on that easily cos I get anxiety and one of my symptoms is not eating much if Im anxious lol only good thing is I keep my figure but like you said I would rather put on a bit of weight and be healthy in mind and body

Take care
xx
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Re: NEW YEAR, NEW DOCTOR, NEW OUTLOOK

Post  Sarah001 on Mon Jan 10, 2011 7:49 pm

I've been on 50mg of Ami since August time last year and have put on about 6lbs. It slows your metabolism down and can also increase the appetite so not great! I haven't had any changes to my appetite but it's definitely done something so it must have slowed my metabolism down. It doesn't help that I can't do much though because of other problems so if you're able to exercise you may be able to avoid weight gain. Pay attention to what you eat while you're on it and you'll soon figure out if it's increased your appetite. For me it's been a disappointment because it hasn't got rid of the pain but I have to take it for Fibro so I get decent sleep.
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Re: NEW YEAR, NEW DOCTOR, NEW OUTLOOK

Post  [Sara] on Tue Jan 11, 2011 4:34 am

I had a really bad reaction with Elavil and had to stop taking it within a few weeks. It actually made me extremely depressed and "robotic", and it really scared my husband. I mean I was already depressed having this condition but with the elavil I think it's safe to say it pushed me a little over the edge and I had suicidal thoughts and stuff.

But don't let that discourage you. I've read about plenty of women who did really well with it and it ended up helping their symptoms tremendously. I just don't think anti-depressants mix well with my body chemistry; I had a bad experience with them in high school when I went through a rough part of my past. Both times using anti-depressants I've had bad reactions. I did think it was odd that my gyno put me on anti-depressants for my hoo-ha, but she explained that it has been shown to help block the pain and relax the pelvic floor.

Hang in there. I pray that this is the answer for you! cheers

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Re: NEW YEAR, NEW DOCTOR, NEW OUTLOOK

Post  Sarah001 on Tue Jan 11, 2011 1:26 pm

Ami is best at blocking pure burning, when I told my vulvar specialist it wasn't helping me much because most of my pain is rawness she said anticonvulsants such as Gapapentin and Pregabalin are better options because they're more sophisticated and deal with various types of pain so if the Ami doesn't work there are other options. Ami made me woozy to start with but you can't actually tell I'm on it anymore except I find it hard to wake up in the mornings.
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Re: NEW YEAR, NEW DOCTOR, NEW OUTLOOK

Post  Sebby (Admin) on Tue Jan 11, 2011 7:53 pm


Thats interesting most of my pain is rawness seems the anticonvulsants would be better suited.
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Re: NEW YEAR, NEW DOCTOR, NEW OUTLOOK

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