Log in

I forgot my password

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

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 6

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 1

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: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

Comments: 0

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: 22


Vulvodynia and IC...and a question

View previous topic View next topic Go down

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

missuswells

Posts : 3
Join date : 2012-02-20

View user profile

Back to top Go down

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).
avatar
ButterflyLiz

Posts : 137
Join date : 2011-11-18
Age : 32
Location : UK

View user profile

Back to top Go down

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.

missuswells

Posts : 3
Join date : 2012-02-20

View user profile

Back to top Go down

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
avatar
ButterflyLiz

Posts : 137
Join date : 2011-11-18
Age : 32
Location : UK

View user profile

Back to top Go down

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?

everclear

Posts : 2
Join date : 2012-02-26

View user profile

Back to top Go down

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
avatar
tinkerbelle2

Posts : 302
Join date : 2013-09-28
Age : 25
Location : Brighton, England, UK.

View user profile

Back to top Go down

Re: Vulvodynia and IC...and a question

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

Have you been tested for strep tinkerbelle?

Alana3

Posts : 1086
Join date : 2012-09-25

View user profile

Back to top Go down

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?
avatar
tinkerbelle2

Posts : 302
Join date : 2013-09-28
Age : 25
Location : Brighton, England, UK.

View user profile

Back to top Go down

Re: Vulvodynia and IC...and a question

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

It can cause internal burning...

Alana3

Posts : 1086
Join date : 2012-09-25

View user profile

Back to top Go down

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.

lonelyone48

Posts : 39
Join date : 2013-12-01

View user profile

Back to top Go down

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
avatar
tinkerbelle2

Posts : 302
Join date : 2013-09-28
Age : 25
Location : Brighton, England, UK.

View user profile

Back to top Go down

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.

lonelyone48

Posts : 39
Join date : 2013-12-01

View user profile

Back to top Go down

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.
avatar
tinkerbelle2

Posts : 302
Join date : 2013-09-28
Age : 25
Location : Brighton, England, UK.

View user profile

Back to top Go down

Re: Vulvodynia and IC...and a question

Post  Sponsored content


Sponsored content


Back to top Go down

View previous topic View next topic Back to top

- Similar topics

 
Permissions in this forum:
You cannot reply to topics in this forum