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» Vestibulectomy
Yesterday at 12:39 pm by Hopeitworks

» Anyone been to see Dr.Claire Bailey in Birmingham?
Tue Aug 15, 2017 6:36 pm by Kezz

» Recently Diagnosed.... Help!
Tue Aug 15, 2017 2:57 pm by amyhp

» Discomfort from my own liquids
Sun Aug 13, 2017 4:27 am by Hopeitworks

» Anyone else have burning on the front of thighs?
Sun Aug 13, 2017 2:20 am by Hopeitworks

» Partial Vestibulectomy
Sun Aug 13, 2017 1:38 am by infinitelywondering

» Anyone being treated by Drexel University???
Sat Aug 12, 2017 8:50 pm by Hopeitworks

» Post Vestibulectomy Pain !!!
Sat Aug 12, 2017 8:00 pm by sj17

» Pain management - what works for me
Sat Aug 12, 2017 9:58 am by sj17

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: 4

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

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 1

New to the site and just had a vestibulectomy

Fri Aug 04, 2017 12:19 am by Hopeitworks

Hello Everyone,

I have been suffering from vulvodynia for years! So I decided to go ahead and have vestibulectomy on July 28, 2017. I really wished I would of found this site before I went through with the surgery. Maybe I would have been more prepared to deal with recovering. I just need someone to talk and I dont mind hearing your story.

Comments: 2

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: 0

can anyone recommend a good dermatologist in LA?

Thu Jul 27, 2017 4:17 pm by saffron

Hi, I am wondering if anyone knows a vulvar dermatologist in Los Angeles? My problems seem to be external, but I'm having trouble finding a knowledgable doctor. My current dermatologist is pretty cosmetic based and I'm afraid all the products he prescribed actually made my situation so much worse!

I know there a few drs in Orange County/San Diego, but was hoping to stay local as even …

Comments: 3

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: 0


Never had un-painful sex

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Never had un-painful sex

Post  cba321 on Sat Jul 14, 2012 7:06 am

I guess I first suspected something was wrong when I was around 15 and tried to use a tampon...there was absolutely no way it was going in, and to this day I don't wear tampons.

My first experience with sex was when I was 19. It was very unpleasant and his penis maybe went in 2 cm. After a while I could finally let him come into me completely but was still unpleasant to say the least, awful actually, most of the time I would have to stop and a lot of the time I couldn't cope with the pain and would bring me to tears. It felt like something was tearing and ripping the skin. I went to the GP, to which she told me I was anxious about sex and that was causing me to tense up and cause the pain. I didn't really agree with this but what else could I say, I was inexperienced. I continued to have painful sex for at least a year, then I went back to the doctor who then sent me to a gyno. The gyno was so irrelevant, his final conclusions after seeing me for approximately 20 minutes over two session was that I had an anxiety disorder and that I would have trouble conceiving children in the future??? I nearly collapsed when I left the office. Luckily for me my partner was understanding and helped me somewhat with the condition until we broke up, mostly for other reasons than vulvadynia, but it didn't help, but would have happened anyway. During this time I tried Endep (antidepressant), low oxalate diet, antibiotics and huge amounts of anti fungal tablets - it did nothing at all

I then started seeing Marek Jantos from a google search. I did the biofeedback for a few months I think, it did help to minimise my emotional reaction to the pain and let me relax somewhat despite the pain, but I could not maintain the relaxed muscle. I stopped seeing him due to how expensive it was and limited changes and plateau of change

I then went to another GP who sent me to a gyno in Burwood NSW Australia, Dr. Ann Prys Davies, who was amazing and suggested I try Botox, being at university, poor and single I ended up not going down that pathway at the time. No one else knew of my diagnosis and my family being very religious was also not somewhere I could turn...therefore I blocked it all out, I "forgot" about vulvadynia, relationships and sex for about three years....I don't think I could bear to think about any of it, so I pretended it didn't exist.

I started seeing a guy late last year (2011) and realised that I just could not cope with telling him, things faded between us and he disappeared. It was the awakening I needed I guess, I made an appointment to see Dr. Ann Prys Davies again, I cried the entire appointment, I felt so sorry for her, she was on the receiving end of 3 years of pent up anguish. She suggested I see Sherin Jarvis a physiotherapist at the women health and research institute. An appointment that I think may change my life. She was amazing and knowledgeable. I have always had digestive issues and for the first time someone finally knew about the link. I had suggested it to a dr as I believed the pain was caused by a tight muscle that goes between both the bowel and vagina opening, he laughed at me...I was right though Smile I have meet with Professor Thierry Vancaillie who will be doing Botox treatment. I cried in front of both of them as well...they were very understanding. I also saw the psychologist there for three sessions, but it wasn't for me and I don't think it would have helped me with anticipatory pain, and is something I could practice myself as I have already done sessions with Marek Jantos about relaxing despite the pain as it does decrease the pain somewhat.

At the moment I am 2 weeks away from getting a botox treatment...I am scared but I am happy that I have been able to face my fears and try something even though it may not work or work enough...I have seen the thread about Botox and will add how this goes in 2 weeks time...



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Re: Never had un-painful sex

Post  abcdefg on Sun Jan 13, 2013 8:00 am

I have had the "it's all in your head" lecture as well. I've been told it's because I'm too stressed, despite my telling my gyno that I'm a fairly laid-back person. I have never had sex during which I did not tear up from the horrible burning pain. I decided that I was just pathetic and kept trying to have sex in hopes that it would get better. It did not. I was placed on amitriptaline for my migraines, and that has actually helped some of the pain. I am also using the dilator method, which I have hope for. I'm not supposed to have sex until I can use them with no pain. I hope that the botox works for you! I know how stressful the condition can be!!

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Re: Never had un-painful sex

Post  cba321 on Sun Jan 13, 2013 10:46 am

Very sad that a lot of people have the "it's all in your head" lecture.I think it would be more helpful if health professional just said, we don't know what the cause is. Even if it was all in our heads, which it isn't, health professionals should be pointing us towards psychological help! Not just palming us off...very sad indeed no matter how you look at it.

The botox has been helping a lot. I had sex for the first time in while and the pain was significantly diminished, i was blown away. HOWEVER...the botox is still working in my system, and should do for another month. I have been stretching and using dialators and HOPEFULLY even when the botox is gone the muscle will remain stretchec. I have also started with a chiro and had my first session of remedial massage, specifically myofascial massage so see how that goes. In my case it is not just the pelvic floor muscles it is all the muscles involved in stabilising the pelvis that are tight

All the best with your journey!! Smile

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Re: Never had un-painful sex

Post  Alana3 on Mon Jan 14, 2013 6:25 pm

Hey,



Does the botox hurt when they do it? I am maybe heading in that direction, I had a vestibulectomy, but my muscles are totally ridiculous and they are really spasmed. This is all over my body not just the hooha, but I might be headed in that direction. What's it like?

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Re: Never had un-painful sex

Post  cba321 on Tue Jan 15, 2013 7:30 am

Hi alana,

I went under general anaesthetic, had to apparently to ensure i dont move. It hurt for a day or two but then went away. Took about 5 days to start working. It was very weird for a number of weeks, felt like mypelvis was bouncing around everywhere! But after a while that went away. I had to do daily stretches with a dialator im up to 45 mins every day with the largest dialator. Hope fully that will stretch out the muscle permanently

I should change the name of my post as i had sex a few days ago (been a long while) and it wasnt painful wasnt that pleasurable either but ill take it as a win! First time. There was discomfort but definitely bearable! All thanks to botox! However, see if that lasts after the botox has gone....

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Re: Never had un-painful sex

Post  Alana3 on Wed Jan 16, 2013 5:15 pm

Yeah, I don't think so. They like rape you in your sleep with dilators not cool. Plus the side effects freak me out. I don't want to be knocked out again, as I don't handle the anesthesia well. Do you think its worth it?

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Re: Never had un-painful sex

Post  cba321 on Thu Jan 17, 2013 9:31 am

Yeah definitely not nice going under. My doctor does it under general but i have heard others say that they didnt. It was for me but really does depend on each person

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Re: Never had un-painful sex

Post  Alana3 on Thu Jan 17, 2013 1:58 pm

I just had a vestibulectomy, I do not want to go under again! haha I'm working on strecthing and breathing exercises, and it's been a little better everyday, so hopefully I won't have to do botox, I just don't want poison in my vagina lol

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Re: Never had un-painful sex

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