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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


Losing Hope Big Time

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Losing Hope Big Time

Post  Chelsea1991 on Wed May 09, 2012 11:08 am

Hi, I'm 21 anyway I am losing hope in my treatment i have had at least five tablets none work i am currently on neurontin, I have been on so many stuff i started to lose hope, i dont feel nothing work and worst i feel depressed by this all, i just dont understand how nothing come work, I think i might have ic too which i got another set of tablets, i am thinking about the surgery but scared of it because i am not sure if i can have it as i got provoked vulvodynia, to be truthful i dont even understand that. has anyone had surgery who has provoked vulvodynia or any tablets that work, i am at the stage where i dont want to do how many more tablets can i take as i took around five (It could be four) already. I am getting to the point when i dont want to do them kegel excerises and using my dilators i feel like it no point.

Chelsea1991

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Re: Losing Hope Big Time

Post  smile22 on Wed May 09, 2012 9:24 pm

Hi, sorry to hear that you feel so bad. Provoked pain is pain when the area is touched. I have unprovoked pain where it hurts all the time and have tried everything from creams to tablets to injections down there, so I know how you feel having to keep taking things for it all the time, you're not alone. My consultant said to me that often surgery's best candidates are those with provoked pain as it is more effective. I can't explain why because I have forgotten the explanation sorry!! But just wanted to let you know that it might be worth considering surgery as it could help you, but it's generally a last resort and not something to be taken lightly as it holds no guarantees, so the best thing would be to talk through it with a doctor who knows all the facts and can give you proper advice. I have also come across a couple of women that have said that lyrica has helped with their provoked pain. It didn't help me but like I said, mine's different so it might help you if you haven't already tried it. Some also say that tricyclic antidepressants such as amitriptyline helped them, you may have already tried these tablets but if not mention them to your doctor and give them a try. Good luck with finding a solution and don't give up. Also just to let you know that I am 19 and have suffered with this since I was 15, so if like me, you feel that you're too young to be going through this, you really aren't alone. Hope you feel better soon!

smile22

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Re Losing Hope big time

Post  Sunflower82 on Thu May 10, 2012 5:39 am

Hi,

Have you tried seeing a women's health physiotherapist ? Where abouts are u based ?

Katie

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Re: Losing Hope Big Time

Post  ivyrose on Thu May 17, 2012 9:47 pm

Hello,
Please read my post about seeing a chiropractor: http://www.vulvodyniasupportforum.com/t849-i-am-cured-read-this#5393

I have spoken to my chiropractor about surgery for this condition and she does not recommend it at all. She has been in the medical profession for some years and in many cases surgery only makes women with the condition worse. It can actually worsen the pain and is not worth the cost of treatment or the time wasted being bedridden afterwards.

I'm also relatively young to have had this, I'm almost 19 and the pain started about 2 years ago. I know how horrible it feels, there were days when I didn't get out of bed because I felt so hopeless. I really hope you consider looking into chiropractic treatment because it has been a godsend for me. Please don't give up, you still so young and have so many years of happiness ahead of you. Good luck x

ivyrose

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Re: Losing Hope Big Time

Post  Chelsea1991 on Fri May 18, 2012 5:12 pm

I'm from south wales, when you method in your reply about back pain it triggered a though in my head when i was 15 my knee cap keep coming out of place and when it did that i would fall on the floor and i tried physco they discharged me saying nothing they can do for me, but i think i might got IC too.
Also earlier my boyfriend said i feel tight is there anyway to untight myself if that make sense
Thanks for replying to me
xx

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Re: Losing Hope Big Time

Post  ivyrose on Fri May 18, 2012 6:06 pm

Its interesting, the pain I had was in my left foot mainly and travelled up my leg... it shows that everything is linked so theres a possibility that your pain might come from a mechanical problem too. Definitely worth checking out!
I think if you're tight maybe its down to not being relaxed enough, and if you experience pain then it's not surprising you don't feel relaxed!
x


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Re: Losing Hope Big Time

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