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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


NEED SUPPORT.....

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NEED SUPPORT.....

Post  Guest on Sat Jan 11, 2014 7:10 pm

Hello, I'm 20 and have had vulvodynia since age 14. My problems started with yeast infections then bacterial and this lasted a good 4 months before the doctor decided to check and turns out there was no more infection but just horrible burning pain. I can't sit walk or stand for to long. I was diagnosed with vulvodynia, vestibultis, pelvic floor muscle dysfunction, and neuropathy. I have had almost every treatment including a neurostimulator in my back. I also had the biggest surgery available which is the vestibulectomy. I would be more than happy to share more about my treatments and story through email.

I would love to have a friend who has vulvodynia too so I have someone I can talk to who understands what I go through each day both physically and emotionally.




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Re: NEED SUPPORT.....

Post  Alana3 on Sat Jan 11, 2014 8:50 pm

I had a vestibulectomy too hope yours was successful!! It was the best decision of my life Smile where are you from

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Re: NEED SUPPORT.....

Post  Guest on Sat Jan 11, 2014 10:57 pm

The vestibulectomy took the edge off my pain, I'm still looking for a cure...I'm located in Florida. Where are you from and are you still having pain since the surgery??

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Re: NEED SUPPORT.....

Post  Alana3 on Sat Jan 11, 2014 11:14 pm

Im in florida! Where are you? No my pain is completely gone. When was your surgery?

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Re: NEED SUPPORT.....

Post  Guest on Sun Jan 12, 2014 12:03 am

I'm in Melbourne, I had the surgery about 6 months ago.....it did help take the edge off which is a great help. I had a neurostimulator put in but due to complications it has caused more pain than help......

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Re: NEED SUPPORT.....

Post  Alana3 on Sun Jan 12, 2014 12:08 am

I have no idea what a neurostimulator is so I cant help you with that

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Re: NEED SUPPORT.....

Post  Guest on Sun Jan 12, 2014 12:13 am

Who did your surgery?

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Re: NEED SUPPORT.....

Post  young.sufferer on Tue Jan 14, 2014 12:01 am

You will find lots of support here Smile I'm 25 and just starting to take control of my vulvodynia and try to find some relief. I have posted on this site a couple times and the response has been wonderful, we are all going through the same thing and we are all here for each other. I don't really know how to work this site, but if there is a "Private Message" button, you can message me any time. I'm here for you and I'm struggling too. I am currently looking into treating it with chiropractic care, sent out my first e-mail today. I know it may feel shameful to look for help or talk about your condition, but I think the stigma is being turned down and more people are learning about our conditions. I hope your surgery heals perfectly and that you're free from the pain.

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Re: NEED SUPPORT.....

Post  mary jane on Fri Jan 17, 2014 8:50 pm

a neurostimulator?
I thought that was AFTER you have tried all the medication possible, ketamine infusions, lyrica, narcotics///
after them the are nerve blocks I thought pain pumps and neurostim. are final treatments
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Re: NEED SUPPORT.....

Post  mary jane on Fri Jan 17, 2014 8:57 pm

The biggest problem is we keep bouncing back and forth on these forums and read pro and against opinions on surgeries, medication, whatever else but at the end of the day these are simply statistics!!!!!!
just because it worked for her does not mean anything !!! we have different bodies, amitriptyline works for me, but it will do nothing for the next person and so on... it's maddening
I've read so many vulvodynia stories on vulvodynia.com guestbook my head hurts !!! for some the surgery worked...but then again there are 2 surgeries at least ..one with bartholin gland removal and one without ! for some only the bartholin glands were removed and they were cured, for others no, it was nerve blocks which cured them, for others PT, for others lyrica, ad infinitum !

I can advocate all day long about medication because it works for me, but I have different symptoms and reactions to others.
We NEED DOCTORS to figure this out !!! they need to start paying more attention to these conditions
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Re: NEED SUPPORT.....

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