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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


Vestibulitiis surgery

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Vestibulitiis surgery

Post  Coco23 on Wed May 03, 2017 12:31 pm

Hey girls.

I am 23 years old and I've been suffering from Vesti from the age of 19(the first time I have tried to have sex).
As long as I remember I never fingered myself and never used tampons due to pain and general fear.

A month and a half ago, on 16.3, I had a vestibulitis surgery after 4 years of suffering.
I went to my doctor twice after the surgery..last time was 4 days ago and he told me I can have sex now and that it looks great.

So I tried.

I still have pain in the vulvar area, a bit less but similar type of pain of what I had before.
In addition, the Veginismus is now worse than what I had before. Probably because I expected it to be painless and it didnt happen.

I am really sad and hopeless.
I dont know what to do anymore...
I thought I should do a second surgery with another doctor- but I read somewhere that it might take time to heal completely.

I am now 1.5 months after my surgery.. touching my vulvar area really carefully with my fingers and it is painful.. do u think its an unsuccessful surgery and I should redo one or is it just a matter of time?

* The surgery was done on the bottom area of the vulvar only since that was my problem.


Thank you very much for your time... hope to hear from you soon

Coco23

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Healing...

Post  Gill on Sat May 06, 2017 7:35 pm

Hi Coco,

I don't know whether you should have further surgery, but I can tell you what my surgeon told me!

I didn't have my follow-up with my surgeon until 3 months post-surgery, and she said the pain I get might still decrease further. I did have massive improvement in the area that was removed, but still significant pain in surrounding areas, which she said could be because of the way the skin in the vestibule heals, which can take longer than other places.

I am seriously considering further surgery, but will wait a few more months before going for it.

Gill

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Re: Vestibulitiis surgery

Post  Coco23 on Sat May 06, 2017 11:17 pm

Hey Gill thanks for the reply.
In my case its not only the surrending area but also when I try a finger inside of the vagina..it is painful jist like the surrending area and a similar pain to what I had before. Maybe worse. My doctor told me it looks good that I can already have sex..and I tries few times but it only gets worse and burning after everytime.

Do you also have pain if you insert a finger or just outside of it?

Coco23

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Re: Vestibulitiis surgery

Post  Gill on Sun May 07, 2017 12:06 am

Hey there, I'm not sure what you mean when you say the surrounding area as opposed to inside. To me it feels like pain on the inside; vestibule means hallway, like entrance, and that's what it's like. It used to feel like I was trying to push a flaming hot poker in there. Now (3+ months after surgery), its more like a heated needle poking in the specific places that still hurt. I have never had external pain, like on the labia, etc, like some ppl get. My drs held up a mirror and showed me what they were poking to see if it hurt. If your doctor didn't show you what the different bits were they were taking out, that wasn't very helpful for you.

When I manage to get anything through the entrance and inside, the bit that's properly inside doesn't hurt, but the entrance still hurts.

It still hasn't been very long since your surgery, so you should probably give it a couple of months more at least, and try to get a mirror down there to work out what's happening. I am planning to wait at least 6 months after surgery before deciding whether it's worked or not. People say it takes a year to fully heal.

You mentioned that you now have vaginismus; you'll know you need to treat that as well. I suggest you find a good psychosexual counsellor and/or Physio/biofeedback to help with that if you haven't already.

Gill

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Re: Vestibulitiis surgery

Post  flick001 on Mon May 22, 2017 10:19 am

Hi guys,

I was wondering from your posts you mention the possibility of having a further surgery - what exactly is this? the same sort of thing as the first vestibulectomy?

I have just had the surgery and up to week 4 recovery. I feel like the pain is a lot better but not fully gone - i can't tell much though obviously as its only been 3 weeks. But just wondering if you know what further surgery could be an option if the nerve pain doesn't fully resolve?

Thanks

flick001

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Re: Vestibulitiis surgery

Post  Gill on Mon May 22, 2017 4:18 pm

Hi, when I wrote about further surgery, it's because my dr only removed the tissue between 9 and 3 on the clock face. The other half of the circle that wasn't touched, and that's where my remaining pain is, so I'm exploring whether taking more out will improve things further. A couple of people on the Facebook group 'Vestibulectomy Surgery and Vestibulodynia Support Group' mention having a partial vestibulectomy followed by a total. My surgeon didn't want to remove the top because she said there are really bad things that can happen, like fistulas. It might be worth asking ppl who've already had both what they know about it.

Gill

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Re: Vestibulitiis surgery

Post  sj17 on Tue Jul 04, 2017 10:55 pm

Hi Gill,

Who did you have your surgery with if you don't mind me asking?

sj17

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Re: Vestibulitiis surgery

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