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» Looking to meet up in LA/OC CA
Yesterday at 3:43 am by crypticcalico

» Vulvadynia
Mon Jul 24, 2017 11:35 pm by Linda Williams

» Just Diagnosed with Vulvadynia
Mon Jul 24, 2017 1:57 am by angelique2016

» Constant pain, I want to die.
Sat Jul 22, 2017 9:41 pm by Meggiemay

» What is Vulvodynia?
Sat Jul 22, 2017 9:21 pm by mary jane

» Will I ever be able to wear jeans?
Wed Jul 19, 2017 11:02 pm by jungleclover

» Looking for a friend IRL; LA/OC
Wed Jul 19, 2017 10:58 pm by jungleclover

» Anyone else get this from yeast infections? (new member)
Wed Jul 19, 2017 10:37 pm by jungleclover

» Owner of vulvodyniSuppoet.com
Wed Jul 19, 2017 10:28 pm by LaurenVV

Vulvadynia

Fri Jul 21, 2017 11:53 pm by Linda Williams

I am 68 years old and a year ago was diagnosed with vestibulitis, then vulvadynia. I have a history of chinchilla bladder infections, have had major bladder repair, hysterectomy, mid 30's, an auto immune disease. I take a daily antibiotic to keep UTI's at bay. My doctor has done the Quip test which was uncomfortable but did not test anything. I use Premarin vaginal cream 2 times a week. These …

Comments: 4

Just Diagnosed with Vulvadynia

Tue Aug 02, 2016 9:11 pm by CherryTree23

Well, I was just diagnosed today, yay...my symptoms are just burning pain in vaginal opening. This all came about after taking Bactrim, Monistat, Clindomycin and Diflucan. This doctor was extremely confident I have Vulvadynia. Also told me my vaginal skin isn't red. Yes, it is, mine isn't typically electric red. He prescribed Ampytripline (sp) said, I have a very mild case, and worse case …

Comments: 7

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: 21

Looking for a friend IRL; LA/OC

Tue Jul 18, 2017 2:51 am by crypticcalico

Hello!

I am hoping to find a friend in the LA/OC area that I can meet up with in person. I live in Long Beach, California and I am willing to drive a bit to meet. The only person that I've told about this is my doctor(s) and someone who couldn't wrap their brain around it. It would be nice to be able to talk to someone else who understands.

Comments: 1

Owner of vulvodyniSuppoet.com

Wed Jul 19, 2017 10:28 pm by LaurenVV

Hi, I started vulvodyniasupport.com at the age of 28.
I was a leader when there was no help, no forums etc.

As I went on my path, I found acupuncture, herbs and time helped me recover.
Most never do.

I met a wonderful woman named Hanna. She was a patient and became a support leader. She lived in FLoroda.

I have moved on from the support world and found a career that allowed
Me to bring my …

Comments: 0

anyone from southern california in here?

Tue Jul 12, 2011 6:43 pm by Melissa777

Hi Im just wondering if anyone here is from so cal- USA
I am in san diego- but from LA!!!

Comments: 6

Anyone else try Cold Laser therapy/ Low Level Laser Therapy for their vestibulodynia?

Tue Jul 04, 2017 9:01 am by Tired89

Hello everyone. It's been quite a long time since I've posted. I've been extremely depressed and bottling it all up. I've been seeing a pelvic floor therapist (it's only been 4 visits) for my provoked vestibulodynia and the only reason she can get inside of me to do myofascial release and to use the dilators is because I use BLT (benzocaine, lidocaine, tetracaine) ointment on my vestibule prior …

Comments: 2

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


out of ideas

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out of ideas

Post  cremeans24 on Mon Jun 30, 2014 9:57 pm

Hi there,

I found out while I was pregnant with my son about having vulvodynia. I always had trouble having sex but couldn't ever figure out why and it wasn't and still isn't anything I feel like I can talk to any one about. All I am ever told is that I just have a low pain tolerance and nothing is wrong because all test came back normal. In 2012 I got married to my husband after being together for a year and to this day we still have a little bit of issues because we didn't know what was going on but I didn't like sex at all I mean who would like pain that made you cry and so we were surprised when I got pregnant because we hadn't been really trying and not having regular sex but it was a really happy time for us and my son was born on June 13th of this year he is perfect but now I wonder where we go from here. About half way through my pregnancy we stopped being intimate because it hurt me so bad and I have had a history with depression and boy is it back now. I'm working with my OBGYN once i reach the 6 week mark to see if I can get back to a more normal intimate life with my husband, I guess what I"m trying to find out is did anyone else feel like less than a normal woman or am i just plain crazy. but i feel like I don't know what to do and I know my husband doesn't fully understand what I am going through and I'm just trying to find a way to feel better about myself and have people to talk to that understand and can help me through this time as i have no one in my life i feel i can talk to about this that won't essentially make fun of me.

cremeans24

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Re: out of ideas

Post  Alana3 on Tue Jul 01, 2014 2:47 pm

Did you have your baby yet or are you still pregnant?

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Re: out of ideas

Post  cremeans24 on Tue Jul 01, 2014 4:41 pm

Yeah my baby was born on june 13th. Overall once i had the epidural the birth was not as bad as the doctors thought but i did tear pretty bad and had to get more meds so i couldn't feel them stitching me back up. I couldn't get out of bed that first 24 hours on my own though they think that was the meds. But i will say the discomfort after birth was pretty bad and is just starting to lessen after two weeks but if i move too much i feel it.

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Re: out of ideas

Post  Alana3 on Tue Jul 01, 2014 4:56 pm

Supposedly after a vaginal birth (and the recovery), your vulvodynia becomes less intense.  Maybe wait and see what happens after?  Where exactly does it hurt? And is it all the time or just upon penetration?

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Re: out of ideas

Post  cremeans24 on Tue Jul 01, 2014 5:02 pm

Its only ever been during sex, or exams it is why i never really knew there could be something wrong because i had heard that for some women sex was always painful and i never had any abnormal results, utis or infections no stds so i just thought it was normal because no one had answers for me and i had never heard of vulvodynia before

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Re: out of ideas

Post  Alana3 on Tue Jul 01, 2014 5:33 pm

It sounds like you have provoked vulvodynia, like me.  Basically meaning that the only time you have pain is when you have sex.  And only in one spot.  I would go to a specialist and not your obgyn as their primary focus is babies and not really problems.  The good news is you can be fixed but you're going to be doing process of elimination- creams, pills, etc.  I had the surgery back in December 2012 called a vestibulectomy, but this is a last resort surgery and pretty much ONLY for provoked vulvodynia.  But they are going to want to try a less invasive treatment before they come to that.  You can also try women's physical therapy and see if it helps.  Some people claim acupuncture works.  But my best advice is to see a specialist who works closely with vulvodyna.  Where do you live now? 

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Re: out of ideas

Post  cremeans24 on Tue Jul 01, 2014 6:29 pm

I live in michigan, and the obgyn only caught it after i went to her for being pregnant so im less than a year into this and couldnt do treatment while i was pregnant so i am just trying to figure this out as i go with help from someone who understands what i feel and i can stop feeling so hopeless

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Re: out of ideas

Post  Alana3 on Tue Jul 01, 2014 7:17 pm

Don't lose hope I suffered for about 7 or 8 years before I got my fix so totally understand.  Maybe try someone at the University of Michigan if you're close or if there's a Cleveland Clinic near by you could try them- I just went to the one down here in Florida for a second opinion on something irrelevant to vulvodynia, and they were great!  Keep in mind that this isn't a disease no one knows about, it's just difficult to find a doctor who's not an idiot.  I would google vulvodynia specialists + Michigan and see what comes up.  I actually did it and I saw there was a vulvodynia clinic! (see below) maybe go that avenue!  Very Happy 


https://www.google.com/?gws_rd=ssl#q=vulvodynia+specialists+%2B+Michigan+

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Re: out of ideas

Post  cremeans24 on Tue Jul 01, 2014 9:11 pm

Thank you that helps

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Re: out of ideas

Post  Alana3 on Wed Jul 02, 2014 1:38 pm

No problem- let me know what you decide to do Smile But when you're calling around make sure they put some kind of emphasis on the vulva! I can show you my doctors website so you can get an idea

http://www.jaytrabinmd.com/home.html

Notice how vulvodynia is the first thing you see on the page.  My doc took a special interest in it and he's been my lifesaver!

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Re: out of ideas

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