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


MTV - i cant have sex. I am so disappointed in this episode

View previous topic View next topic Go down

MTV - i cant have sex. I am so disappointed in this episode

Post  emma on Mon Jan 10, 2011 2:11 pm

I don't know if anyone has seen this but mtv has made an episode labelled - i can have sex.

To be honest i dont think it portrays vulvodynia conditions very well.

These girls all ended up with a quick fix solution!! i have not had any relief from any of my treatments and it just doesn't show the extent of the emotions that you go through. The girls did a great job but i think mtv edited it the wrong way.

I have had many different treatments over the time span of about 4 years and seriously, when you realise that each treatment that you have put your heart and soul into hoping it will work, well it hasn't worked, its the worst feeling in the world.

Also in every day situations. I dont feel that i can discuss this condition with anyone except my family. My heart sinks when any of my friends bring up sex in conversation and ask for my opinion. I just make up answers because otherwise it gets awkward.

id love to know what you guys think of the topics ive raised here

em xo


emma

Posts : 10
Join date : 2010-12-29
Location : Melbourne/Australia

View user profile

Back to top Go down

Re: MTV - i cant have sex. I am so disappointed in this episode

Post  Mouse on Mon Jan 10, 2011 7:12 pm

Hi Emma,

Welcome Smile

I don't think anyone outside the US can view the show. I read about it and tried to find it on youtube, no luck.

I read a review about it on the Susan Bilhiemer's secret suffering website, she said while it was great there was a show about vulvodynia the treatment options and how to get treatment weren't very well covered.

I've told my friends I have a chronic pain condition, not even my husband gets that it's 24/7 though. I didn't tell my family until last month (and then just the PG version) my Dad has cancer so they have enough to worry about. It's tricky! I was gobsmacked recently when a woman I know told me about her friend who has just had a breast removed. Apparently she goes on about it a bit. No shit!!! Maybe people are just too busy to care? Which is why we have online forums for likeminded people.

This year I'm going to try really hard not to be such a hermit. I can come on here and have a moan with people who understand. I'm seeing a PT for the first time and maybe a womens health specialist. Hmmm will also need to find a job!

Have you joined the FB group Emma? We are all real people and it's lovely to see peoples faces.

Take care xx.

Mouse

Posts : 303
Join date : 2010-09-09
Location : New Zealand

View user profile

Back to top Go down

Re: MTV - i cant have sex. I am so disappointed in this episode

Post  Ellie on Tue Jan 11, 2011 1:14 am

I completely agree with you Em! It was portrayed as something that has a quick fix solution Sad It was nice to get the word out about issues like this, but it really didn't show the real frustration and that it effects more than just not being able to have sex.It effects your day to day living. But still nice to get the word out.
avatar
Ellie

Posts : 13
Join date : 2010-12-08
Location : Minnesota, USA

View user profile

Back to top Go down

Re: MTV - i cant have sex. I am so disappointed in this episode

Post  [Sara] on Tue Jan 11, 2011 4:15 am

I do agree that they edited the show pretty badly...they focused so much on sex (well, I guess that was in the title of the show Shocked ). Not surprising since this culture is so focused on sex, and having lots of it. It doesn't help me with my condition at all...

It was good that they got the word out about these conditions, but I do think they made it seem like it can just magically be cured. I was just amazed that MTV would do a special about it, so I posted it on the facebook group when I found out about it. They definitely left out a lot of crucial information.

I tried using a video-capture program to record it for the non-US ladies, but I still haven't figured out a way for them to watch it! Maybe I'll think of something else soon. cyclops

[Sara]

Posts : 26
Join date : 2011-01-01

View user profile

Back to top Go down

Re: MTV - i cant have sex. I am so disappointed in this episode

Post  emma on Tue Jan 11, 2011 7:53 am

i added one of the girls from the video to facebook. Her name is Tali keteri and she has posted the videos on her facebook

emma

Posts : 10
Join date : 2010-12-29
Location : Melbourne/Australia

View user profile

Back to top Go down

Re: MTV - i cant have sex. I am so disappointed in this episode

Post  Ellie on Tue Jan 11, 2011 8:01 am

I was going to say, I am getting the full episode very soon here (downloading) for others out of the states to see it. Smile I will post it here and/or somewhere on these forms so everyone can view them.
avatar
Ellie

Posts : 13
Join date : 2010-12-08
Location : Minnesota, USA

View user profile

Back to top Go down

Re: MTV - i cant have sex. I am so disappointed in this episode

Post  noni on Tue Jan 11, 2011 2:54 pm

Have not seen it, but as it is mtv....not a complete shocker that it focuses on sex
avatar
noni

Posts : 242
Join date : 2011-01-10
Age : 30
Location : Ontario

View user profile

Back to top Go down

Re: MTV - i cant have sex. I am so disappointed in this episode

Post  Sebby (Admin) on Tue Jan 11, 2011 7:42 pm


OOOh I may search for her on facebook. I subscribed to her videos on youtube.

I remember channel 4 doing their embarrasing illnesses programe on vulvodynia and the women went in there got prescribed some ami was given actupucture and would you belive it she was getting better! No mention on other meds, pelvic floor dysfunction, bio feedback, etc etc...

I dont understand at all how it all seems so simple from telly!

I emailed the programme...ignored..how suprising.. Mad

Im thinking we need to get this into the press more..I really dont know if any womens magazines have covered this topic properly? Not sensationalised mags like chat..sick of seeing the horrible cover stories they have like "my cat killed my husband then our house blew up and I got my legs cut off by the lawnmower" type stories Shocked

Like Cosmo or something? Hmmm I dont mind being interviewed if I knew they would portray it in the right way and I was anonymous lol but I dont really trust they would cover it properly with all its complexities and how it really effects our lives?

avatar
Sebby (Admin)
Admin

Posts : 750
Join date : 2009-12-03
Age : 36
Location : London UK

View user profile http://vulvodyniasupport.forumotion.net

Back to top Go down

how do I get onto the facebook forum?

Post  nadja on Tue Jan 11, 2011 8:16 pm

emmmielou wrote:i added one of the girls from the video to facebook. Her name is Tali keteri and she has posted the videos on her facebook

nadja

Posts : 12
Join date : 2011-01-11
Location : Banbury, Oxfordshire

View user profile

Back to top Go down

Re: MTV - i cant have sex. I am so disappointed in this episode

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