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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


Newly diagnosed

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Newly diagnosed

Post  christina1 on Mon Jan 23, 2012 1:17 am

I was diagnosed this past Friday with VV after having intense burning occurring suddenly in December. I was treated for yeast infections multiple times despite negative cultures. The treatments did not help and some made the burning worse. I have tested negative to all STD's and bacteria as well. I am to start Estrace cream tonight. I'm nervous. I don't like taking meds and this scares me. I don't get this disease at all and am so confused. Does anyone else have discharge with this? It is white, no odor, and looks liked fluffy cooked egg whites. I have had it already. I can only where sweats and don't want to go out. HELP please!!!!! I have been married almost 22 years and this is ruining everything.

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?

Post  AroraNightfire on Tue Jan 24, 2012 4:50 am

Is it the outside of the vagina that it burns? The perineum? The lips? Im 27 and Ive been in a relationship for 5yrs now. Im lucky he is very understanding. He never asks for sex because he knows it will hurt me. Im on Lyrica for pain. When its bad I try Cymbalta along with it. How long has your pain been going on? Is your husband understanding?
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Newly diagnosed

Post  Loulou on Tue Jan 24, 2012 1:59 pm

Hi Christina

I can completely understand and empathise with your confusion and anxiety as my circumstances are similar - I was diagnosed last week after my symptoms started up in November, treated for thrush, all tests coming back negative etc.

Firstly a positive - I think we are both so lucky that we have been diagnosed so early. This means we can start treatment quickly rather than suffering years of pain and discomfort which so many other women have experienced. I'm also telling myself that this means that my pain will have less time to become embedded, less time for my body to have a 'memory' of this type of pain and therefore I have a better chance for my nerves to be 'retrained' back to 'normal' - no idea if this is possible but I will be asking this question when I next see my consultant in a few weeks. I've also come to realise very quickly that it is so important to be as positive as possible (can be hard i know). I've noticed that when I get stressed or upset about this my whole pelvic area tenses up and seems to make it worse (something else i'll be talking to my consultant about).

Regarding the discharge, yes I'm getting a white discharge but not curdy like thrush. My consultant wasn't concerned by this and said that discharge is normal for all women and it can vary during your cycle. I'm just gonna keep an eye on this and note any changes.

As for your treatment, it sounds like your GP/consultant thinks it might be hormonal/menopausal related? Was this discussed? what's your thoughts on this? Has anyone else here had success with Estrace?
My consultant gave me Lidocaine 5% to numb the area (worked the first time but burnt like hell the second time and seemed to worsen my symptoms so I haven't dared use it again yet - I will try again if i get a bad flare up just to be sure). She also recommended i use an emollient - i've been using E45 cream liberally and this seems to have helped - my symptoms have been relatively calm for the last couple of days. My thinking is that my lady bits have been subject to so much over the last couple of months that i'm trying to do the minimum to them at the moment!

I found the Vulval Pain Society's handbook very helpful - it costs £10 but is worth it. This would help you understand the condition. I can't post the weblink (i only joined this forum last week and there's a 7 day wait before i can post a link but if you google Vulval Pain Society you'll be able to access their website)
I also did loads of internet research - though I got a bit overwhelmed by all the potential info available and it stressed me out a bit so now i'm taking it a step at a time.

Hope this is of some help Christina. I felt like you in the first few days after my diagnosis but with help and support (medical and otherwise) believe things will improve.

Loulou

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Re: Newly diagnosed

Post  christina1 on Wed Jan 25, 2012 12:29 am

Yes my burning is only on the outside. I can't touch any of the skin without it burning afterwards. I wasn't really told it was hormonal. Not sure why the Estrace. I'm only 41 and she said I'm young for premenopause but it can happen this early. I am also supposed to do salt baths but so far Im too afraid. Today I saw a new Gyn and she gave me a script for Lidocaine. I havent filled it yet. I was also started on a tricyclics antidepressant yesterday because I am now severely depressed by this. The psychiatrist also thought it might help with the pain. The discharge is annoying. I've never had anything like it before. I'm scared and don't understand why this came on so suddenly. I have never had issues below ever.

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Re: Newly diagnosed

Post  Sarah001 on Wed Jan 25, 2012 12:55 pm

I use salt in the bath and it's been fine for me, start with just a bit and work up to more. I find it odd that they frequently associate generalised V to hormones because to me hormones would only affect the vestibule and not the external area, I have generalised V as well as VVS so it's something I keep coming across online but I don't really get it to be honest!
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Re: Newly diagnosed

Post  christina1 on Wed Jan 25, 2012 5:12 pm

What kind of salt do you use? I was told aquarium salt from the pet store. The Gyn I went to yesterday suggested Domeboro instead. Has anyone tried that? Not sure which to try really.

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Re: Newly diagnosed

Post  shortstuff on Thu Jan 26, 2012 12:52 am

I use Aveeno oatmeal bath usually, this seems to help a lot (and for soap, the Aveeno baby soap when I shower)... or the Vasaline brand bath beads with Vitamin E.. The ocean breeze one for some reason was the best for me, no idea why.

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Re: Newly diagnosed

Post  christina1 on Thu Jan 26, 2012 1:35 pm

OMG, I tried an Aveeno bath and it burned so bad afterwards I almost had to go to the ER, but then I thought seriously what could they do. Maybe I will try the Vaseline needs. Just running plain water down there in the shower bothers me!

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Re: Newly diagnosed

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