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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 …

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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


Vulvodynia and IC...and a question

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Vulvodynia and IC...and a question

Post  missuswells on Mon Feb 20, 2012 9:17 am

Hi there! I was recently told I have vulvodynia along with IC (interstitial cystitis). It wasn't a surprise to me as I've been dealing with these symptoms since I was a little girl. But here is what I'm wondering...is vulvodynia really the right term for me?

You see, I don't actually experience pain in my vulva. I experience it inside my vagina. All the descriptions I've read of vulvodynia say its around the vagina, not inside. I experience burning, pain, and discomfort inside, especially during sex. However I don't believe it to be vaginismus because I've always been able to use tampons and can have sex easily, or start to anyway...I have no troubles with my husband getting inside. It just hurts like hell when he does.

So is that still vulvodynia? I want to be as educated as possible to help myself. Along with these, I have fibromyalgia, depression, generalized anxiety disorder, and adult ADD. With all these physical and mental ailments, I'm used to being incredibly well-read about everything and making educated choices about my challenges. So any opinions on if vulvodynia seems to be the most correct diagnoses would be helpful...I know you guys aren't doctors. But anything helps Smile thank you!

Rachelle

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Re: Vulvodynia and IC...and a question

Post  ButterflyLiz on Mon Feb 20, 2012 4:01 pm

Hmmm, interesting question. I've wondered in the past where the dividing line between vulvodynia and "something else" falls! Weird question but how far inside does it hurt? I do have pain round the vestibule & sometimes further out too but my sorest spot has always been about one inch inside along the back wall of my vagina. Have you had a poke about yourself to see if you can identify any specific sore areas? I only ask because when I try & have sex it feels like everything is hurting inside & it's hard to tell exactly where the pain is coming from, but when I examine myself it's actually mostly coming from that one part. Nothing further in than that actually hurts inside. I have a theory that all the pain I now experience originated & radiated out from that one spot.

If it only hurts when the sore area is touched, that would be provoked vulvodynia (as opposed to unprovoked, which is pain all the time).
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Re: Vulvodynia and IC...and a question

Post  missuswells on Mon Feb 20, 2012 7:02 pm

I did at one point do lots of "poking around" to figure out where exact pain was...I have one spot right above the opening that is intensely painful when touched. But when I have sex that isn't what bothers me...it is the feeling in the vaginal canal. Can it be stemming from that one spot? And is that still vulvodynia?

I find the most relief when I use lidocaine *inside* my vagina, not in the vulvar area...so I know that's where most of the pain is, besides from the one spot outside. And that one spot only hurts when touched, but the inside of my vagina hurts all the time.

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Re: Vulvodynia and IC...and a question

Post  ButterflyLiz on Mon Feb 20, 2012 7:36 pm

In all honesty, I don't know... vulvodynia is technically pain in the vulva, and the vulva is by definition the external genitalia only. However, it does seem that vulvodynia pain can spread all over the place.

Would be interesting to see if anyone else has mostly pain inside?

I know on the thread about instillagel (http://www.vulvodyniasupportforum.com/t670p15-lidocaine-beginner-question) a couple of the ladies were saying it worked best when they injected it inside.

Liz
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Re: Vulvodynia and IC...and a question

Post  everclear on Sun Feb 26, 2012 6:33 am

Yes. I just posted my own story in the New Members forum. I only feel pain inside, I don't have any external symptoms, so I wasn't sure if it could still be vulvodynia?

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Re: Vulvodynia and IC...and a question

Post  tinkerbelle2 on Wed Nov 20, 2013 10:04 am

I have pain inside!!! And I have been using lidocaine inside too. Please msg me if you see this because I'd love to chat. It seems like there were quite a few girls and women who had like my exact thing but they don't seem to come on here anymore and all the posts are over a year old Sad
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Re: Vulvodynia and IC...and a question

Post  Alana3 on Wed Nov 20, 2013 11:51 am

Have you been tested for strep tinkerbelle?

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Re: Vulvodynia and IC...and a question

Post  tinkerbelle2 on Wed Nov 20, 2013 4:05 pm

No I haven't, is it something that may be worth asking to be tested for?
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Re: Vulvodynia and IC...and a question

Post  Alana3 on Wed Nov 20, 2013 4:32 pm

It can cause internal burning...

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Re: Vulvodynia and IC...and a question

Post  lonelyone48 on Sun Dec 01, 2013 5:58 pm

My pain is unprovoked, but I can touch where I believe the pain comes from. On a clock it would be 6 and it feels like scarred tissue. On initial penetration it burns a little, but once its past that point it doesn't hurt at all. The next day or two are very painful. I have mostly itching and throbbing in the entire area includinding my clitoris.

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Re: Vulvodynia and IC...and a question

Post  tinkerbelle2 on Sun Dec 01, 2013 8:55 pm

Lonelyone mine feels a bit like scarred tissue also Sad
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Re: Vulvodynia and IC...and a question

Post  lonelyone48 on Sun Dec 01, 2013 10:27 pm

I had a vaginal hysterectomy in 2001 and wasn't diagnosed with Vulvodynia until 2005. The doctor I'm seeing now is the one who thinks the instruments used during my hysterectomy caused nerve damaged and it is in that area the skin looks scarred. Makes me angry just knowing this painful condition could have been prevented.

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Re: Vulvodynia and IC...and a question

Post  tinkerbelle2 on Wed Jun 18, 2014 9:43 am

That's terrible! Most treatments in health care seem to come with terrible side effects, or create new problems! My mum had an op to have a polip removed from her uterus and then ended up with a prolapsed disc causing terrible back and leg pain and some permanent numbness! We think it's because they moved her roughly.
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Re: Vulvodynia and IC...and a question

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