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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


Botox injections

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Botox injections

Post  KJ on Wed Aug 21, 2013 6:54 pm

Hi, I'm new to this forum but have had vulvodynia for over 5 years!! Just recently,
I received my first round of botox injections...9 days ago. Big flare up and no relief so far. Has anyone else been through the process? If so, what was the outcome? I was hopeful, but now I feel terrible and worried that nothing will work!

KJ

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Re: Botox injections

Post  Alana3 on Wed Aug 21, 2013 7:01 pm

Did you do that for vulovdynia or vaginismus? I heard that it could help muscles and I have heard of people having success from it. I chose not to do it and just dilated instead. Have you contacted your doctor yet, maybe it's a normal side effect? The good news is, it eventually runs its course and goes away. But maybe your body just needs to adjust and it will be better in a few weeks. Keep us updated and good luck!!

Alana3

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Re: Botox injections

Post  KJ on Wed Aug 21, 2013 7:49 pm

I was diagnosed "this time" with vestibulitis... He said the botox would stop the muscle spasms...it has just made my life hard...more Vicodin and I'm just exhausted from being in pain.

KJ

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Re: Botox injections

Post  Alana3 on Wed Aug 21, 2013 8:14 pm

hmm... Have you tried physical therapy?? For muscles, it works pretty well! But probably don't try anything new quite yet. I had a vestibulectomy in December and went thru PT with the thought of if it didn't work, I would try botox. I only mention PT because if botox doesn't work, maybe you could try that and feel better? But that probably doesn't make you too excited to hear that. This is such a frustrating condition, because sometimes it takes a long time to find out if something works. I would say wait a few more weeks and see what happens. If it doesn't work for you keep in mind that it will eventually wear off and you can try something new after. Where are you from? Hang in there, you will find something that works for you! Smile

Alana3

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Re: Botox injections

Post  KJ on Wed Aug 21, 2013 8:29 pm

Yes, I actually start physical therapy on Monday...I've done it before without success but never in combination with the botox...I wonder if a vestibulectomy is in my future...what were your symptoms? I'm in Sacramento California area.

KJ

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Re: Botox injections

Post  Alana3 on Wed Aug 21, 2013 8:49 pm

Mainly pain with sex. Excruciating if you have to do surgery it really isn't that bad :)and oooh cali I live in Florida

Alana3

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Re: Botox injections

Post  KJ on Wed Aug 21, 2013 9:09 pm

Mine is a burning sensation all around the area..outside and in...no sex for me...wouldn't even attempt it!!

KJ

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Re: Botox injections

Post  Alana3 on Wed Aug 21, 2013 9:26 pm

I'm pretty much ok now the surgery really helped Smile does it hurt all the time?

Alana3

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Re: Botox injections

Post  KJ on Wed Aug 21, 2013 9:30 pm

Mostly...I wake up okay and after about 2 hours I am a mess again...probably from sitting. Desk job.

KJ

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Re: Botox injections

Post  Alana3 on Wed Aug 21, 2013 9:39 pm

Haha I get crazy yeast crap... fun and than I flip I have an std pretty sure my boyfriend would but l like hearing that lol ugh I hate this!

Alana3

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Re: Botox injections

Post  Annie82 on Thu Aug 22, 2013 1:18 pm

KJ wrote:Mine is a burning sensation all around the area..outside and in...no sex for me...wouldn't even attempt it!!
Hi, I had a burning sensation, in and out too. It was like hot sandpaper was constantly rubbing against me. Not sure if you have a similar experience. The thing that helped me was trigger point therapy. I'm not completely better yet but the burning sensation is gone completely. Only skin sensitivity on the right side is left. I don't know anything about botox (sorry) but I hope you feel better soon.

Annie82

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Re: Botox injections

Post  KJ on Thu Aug 22, 2013 3:05 pm

Thank you...I am starting PT Monday and trigger point therapy is probably part of it...I will look forward to feeling better.

KJ

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Re: Botox injections

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