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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 …

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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 …

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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 …

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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 …

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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 …

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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


Question for you ladies about Symptoms...

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Question for you ladies about Symptoms...

Post  Kathye10 on Mon Apr 01, 2013 4:09 pm

Hi ladies,

I know that everyone's V and VVS is caused from different things, but curious as to what the women with unprovoked feel on a regular basis. Also do you get constant bacterial or yeast infections? I get burning and now itching as if I have a yeast infection (and to my knowledge I don't have one) but it doesn't last all day, it sort of comes and goes on and off. Just trying to compare notes Smile
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Re: Question for you ladies about Symptoms...

Post  Sarah001 on Mon Apr 01, 2013 5:43 pm

I have unprovoked and I have burning in the entire vulvar area so bad I've had to give in and take medication for it and I have constant soreness/rawness in the vestibule too. The meds have reduced the burning alot but it now feels like a prickly feeling if the skin is touched so still altered sensation. I get yeast infections occasionally and never had a bacterial infection in the vagina but went through a phase last year of very regular UTIs which I think were caused by incomplete emptying of the bladder due to pelvic floor tightness. I often feel like the bones beneath the vulvar are bruised too if that makes sense? I had brief itching which mysteriously disappeared and hasn't returned.
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Re: Question for you ladies about Symptoms...

Post  Kathy100 on Thu Apr 04, 2013 11:57 am

I have unprovoked too & my main symptom is a horrible burning & raw feeling in the vulvar which I've got under control by taking notriptyline. Still painful to the touch but nowhere near as bad as it was. I also get prickly, spiking pain around the vulvar / groin area. Also get back pain & tight muscles in legs & buttocks. PT is helping with this, correcting my posture, doing exercises etc.

I haven't had any yeast infections or itching but did have a series of UTIs when it first started as provoked.

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Re: Question for you ladies about Symptoms...

Post  smile22 on Thu Apr 04, 2013 9:10 pm

I feel constant burning. Sometimes i can feel slightly itchy but its almost like a painful itch :S i'm not sure how to explain it really but its not the sort of itch that i get anywhere else! I also get some stabbing pains but the main thing is burning, it feels like an open wound or as if someone has put something corrosive like acid on me. This is all the time, but sometimes it is literally to the point where I feel like I am going to die from the pain, and other times it is just there hurting me all the time. Nothing improves it, and well I was told I had yeast infections about a million times before I got diagnosed with v a few years ago, so i probably do still have them but i am totally against the medication as it never worked and just damaged me further. so yeah, thats me on a daily basis lol.

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Re: Question for you ladies about Symptoms...

Post  Kathye10 on Fri Apr 05, 2013 3:07 am

Kathy100 - So is your V from PFD?

Smile22- Gosh, I'm so sorry to hear how much pain you are in. How did your V start?
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Re: Question for you ladies about Symptoms...

Post  Kathy100 on Fri Apr 05, 2013 11:45 am

None of the doctors I've seen have come out and actually said it's PFD but given my symptoms (and the fact I've had IBS on & off since I was 21) - I think it could be especially as so far the physio is helping & I'm riddled with trigger points! The other thing that they said it could be is pudendal nerve damage but I really hope it isn't that & is just muscular.

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Re: Question for you ladies about Symptoms...

Post  Sarah001 on Fri Apr 05, 2013 12:49 pm

Have to say PFD is not something most doctors know much about, they usually only know about laxness of the pelvic floor. The one doctor I saw who did was a GU doctor and she told me staright away she thought that would be my problem but only because she understodd the various causes of V.
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Re: Question for you ladies about Symptoms...

Post  Kathye10 on Fri Apr 05, 2013 3:11 pm

So with PFD, I'm assuing you noticed symptoms coming on over a long period of time, or was it acute?
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Re: Question for you ladies about Symptoms...

Post  BpCookie on Fri Apr 05, 2013 4:09 pm


wow! You guys have just described my symptoms. I'm not quite sure what you mean by provoked pain. I have constant burning, from when I wake till I go to sleep. Friggin burning bush from Hell!!! I used to have a raw feeling and also that cactus poking feeling too. Those went away and now I'm only left with the burning. I used to get YI constantly but I could never tell if I had one for sure because my vuvla always burned from the LSC and I'm always getting some kind of white discharge that none of the Dr.s have ever figured out. So half of the time that I went in to be checked for a YI it was negative. I also get BI quite a bit but then again, its hard to tell if I have an inf. or if its just the LSC. My Gyno thought that perhaps I was allergic to yeast, so she put me on a 6 month treatment of YI medication. So far I haven't gotten a YI but it has done nothing for the burning.

So thats me wrapped up in a nice hot package.

Hope you girls find an answer soon. Stay cool my friends. hugs
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Re: Question for you ladies about Symptoms...

Post  Sarah001 on Fri Apr 05, 2013 5:41 pm

With me Kathy I had alot of symptoms that indicated a tight pelvic floor for years, ever since my pelvis became unstable in fact. It usually goes unnoticed for a long time with minor symptoms or no symptoms but then something is the final straw and suddenly you start to notice it. I had sacroiliac joint dysfunction which goes hand in hand with PFD and V and I felt like I had to push urine out instead of being able to relax and let it flow and urge would rapidly become urgent so urinary urgency, I'd get constipated no matter how much fibre and water I had because again my PF wouldn't relax and go with the flow, I had provoked only V symptoms for a few years before it became unprovoked, I'd get weird tingling burning sensations that would go off so quickly I didn't bother to look into them and my brains attempts to stabilise my pelvis would have me holding my breath instead of breathing properly and I'd grip with the glutes and pelvic floor all the time and while I was aware of the external gripping I had no idea I was doing it with my PF.
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Re: Question for you ladies about Symptoms...

Post  Kathy100 on Mon Apr 08, 2013 11:16 am

Looking back now, I was like Sarah with different symptoms that started at different times all pointing to a tight pelvic floor. It started with IBS & not being able to relax my muscles to go to the toilet. I also used to "push" my urine out rather than just relaxing it which meant I went to the loo far more often than anyone else I know. Then I had the provoked V symptoms & UTIs after sex on & off for a few years (but Drs said nothing wrong) & then it turned to unprovoked. Now I've researched it, joined this forum, seen pain specialist - I realise how it's all linked. My physio told me that both my stomach & pelvic floor are permanently clenched. I had no idea - learning to relax the muscles now and it's making a difference.

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Re: Question for you ladies about Symptoms...

Post  Kathy100 on Mon Apr 08, 2013 11:18 am

Hugs to you too BP - stay strong xx

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Re: Question for you ladies about Symptoms...

Post  Kate1981 on Mon Apr 08, 2013 9:22 pm

I have provoked V which turned into unprovoked. Started after sex with a new partner and a uti which tested positive for ecoli culture. Initially my symtoms were hot burning in my vulva vestibule and vagina mainly right sided. The burning was so I tense I thought there were flames inside me. The burning started to subside after about 6 weeks with the help of amitriptyline. It has left a rawness stabbing crawling type pain in my vagina. I have problems passing water and I am also constipated. Having a bm always causes burning in my vagina as well as my rectum. I don't really have vulval pain now it's all deep in my vagina on the right side. I am seeing 2 physios who both believe my symtoms are caused by my pudendal nerve which is what I suspected all along. This however could be due to pelvic floor dysfunction as my muscles are tight and I have many external trigger points as well as internal ones. I also have pelvic misalignment. Some days are better than others around my period the pain is always worse and while I am bleeding I have a dragging sensation. I have suffered with IBS from around 15 so I think my pelvic floor has always been tight. My past partners have also all said that I am very tight which I knew myself I always felt like a virgin even after having sex for 16 years. Just hope physio will work or I will have to consider nerve decompression of my pudendal nerve.

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Re: Question for you ladies about Symptoms...

Post  Kathye10 on Mon Apr 08, 2013 10:16 pm

Gosh, I hope your physio can help too! It's just so strange that something like this can come on after 1 sexual experience.
Very frustrating. Sending lots of healing thoughts your way. Smile
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Re: Question for you ladies about Symptoms...

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