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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 …

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 …

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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


Big Hugs and Hope

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Big Hugs and Hope

Post  noni on Mon Jan 10, 2011 10:56 pm

hi ladies

So my nightmare began all of a couple months ago. The burning, itching, and general discomfort. My search for help started with me going to the walk in clinic and them sending me to a gyno. He basically just dismissed me and gave me yeast antifungals and cream, you all are familiar with this. Then when i returned two weeks later still complaining...he gave me diflucan. Obviously that didnt work. Then got tested for stis those came back negative. Have probably seen five medical professionals, however the last one a dermatologist, upon examining me immediately diagnosed me with vulvodynia, and now i am waiting for my next referral to a vulvar clinic.

I am very frustrated and feeling alone. I can no longer ride my bike, walk comfortably, sit, or feel like a normal person. Also being told I was crazy or a former sexual abuse victim, has not helped my mental state. I have no one to confide in. Going to work is horrendous as I am constantly being reviewed by supervisors and having to interact with people in a relatively chirp manner, all the while in terrible discomfort.

Ladies help me out, could i simply have a terrible allergic reation to a soap i used in the past, as in this is just a skin thing, or is that what vulvodynia is...f-ed up vulva skin tissue.... or is it my nerve endings...
do u think the vulvar clinic will finally help me...what if they again say they dont see anything

I DO NOT like being acutely aware of the girl bits. This is what people dont understand, its like if you have a bad knee, then you are constantly aware of it. Same with this b.s.

PS : i am so sick of these quacks prescribing cremes that only provide temporary relief at best. I am terrified of putting ANYTHING down there. The cremes are nasty and thick and greasy, just gross.

Please: Any words of wisdom for me, especially when i am on the rag, i just feel so much worse, maybe its my mood or maybe something else. The pads feel like sandpaper down there....


Thank you for reading. tongue

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Re: Big Hugs and Hope

Post  Mouse on Mon Jan 10, 2011 11:25 pm

Hey there, well you are in the right place! We are all going down the same road and have mostly been treated like fools by the medical profession. Over the Christmas break I ran into the gyny (twice! I'm avoiding that cafe now) who told me to see a sex therapist and take evening primrose. She treated me like a fool and all via email or her bloody receptionist because she wouldn't give me an appointment! Oh that was until I got fed up and asked for a referral somewhere else. She then needed to see me and charged me $90 for the pleasure of saying she had no idea what to do and she'd never seen it before. Pick up a book lady!

The vulval clinic is a great place to start, that's where I found my new improved specialist. She specialises in vulval pain... I think I love her... no crazy fool comments from her.

I don't think there is an easy answer but there are a number of things you can do. First, don't use soap down there at all. Wear cotton underwear or none at all when you are at home - up to you whether you do it when you go out I suppose! Sebby has posted a list somewhere, have a hunt around. A few of us are trying the no sugar/yeast free diet. Alcohol and coffee are triggers for me so I try to avoid them.

Being constantly aware of your girl bits is a curse, wouldn't it be much easier to have a headache? I'm having plenty of those as well - caffeine withdrawal!!! Aaahhhhh! I haven't been able to cross my legs since this started but I can now sleep in most positions. When it kicked off I could only sleep on my back.

I have a different sort of V but there are others who have the same and we all have plenty of advice.

I'm pretty keen on therapy, strange because if she'd given me that advice to my face I proabably would have hit her. Having someone to talk to is REALLY important.

Also check out the FB group, if you want to join you need to give sebby your details. It's completely private and doesn't post to your wall ... pheww!!! We are a small but perfectly formed group and it's lovely to put faces to names.

Good luck and welcome
Vicki


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Re: Big Hugs and Hope

Post  noni on Mon Jan 10, 2011 11:45 pm

Thanks for your support and kind words of encouragement Vicki. Yes I will definitely ask the doctor at the vulvar clinic about support groups in my area. I think the psychological impact is just as, if not more, influential on my well being. The general population has never ever heard of this. I never heard of it before my journey began. So I need to talk to women who actually KNOW this is REAL hello!!!

Yeah...I dont know what worries me more about my next appointment, being told I have nothing (as per usual) or being told I conclusively have vulvodynia by a vulvar expert.

I dont know anymore.

All I know is there's something wrong.

Thanks again this is very much appreciated. Wink
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Re: Big Hugs and Hope

Post  Sebby (Admin) on Mon Jan 10, 2011 11:57 pm


Welcome to the forum!

I think Vicki means this link http://vulvodyniasupport.forumotion.net/t171-secret-suffering-website-tips

A few good tips I got from another site.

There are a few theories on the causes of Vulvodynia, some think its pelvic floor dysfunction, nerves, skin disorder etc...

I seem to think it could be a little of all..which is often why a multidiciplinary approach seems to have better results.

For instance I know my skin is sensitive so I do not use any products down there, no purfumed products nothing apart from water and lube to use with my dialators

Also as I mentioned Im going to get refered to a womens physical therpist and am also doing home dialators as well as biofeedback very soon.

I am waiting to see if the pelvic floor route yields any results...

The Vulval clinic is a great place to start, also get refered to a pain clinic and see a women's physical therapist..may as well get it all rolling!

Good luck and take care

Sebby
xx
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Re: Big Hugs and Hope

Post  [Sara] on Tue Jan 11, 2011 4:06 am

Hi noni cheers

You came to the right place. I found this forum a couple weeks ago and it has helped me so much. It's so much better to talk about things instead of internalize them (that's what normally gets me depressed about everything). My symptoms are a little different than yours; I don't have the itching and my therapist thinks my symptoms are from pelvic floor dysfunction. My pelvic floor is almost constantly in spasms, it burns like a UTI when I pee, and with penetration I feel the rawness, burning, and stabbing pains. Sometimes I take muscle relaxers to help relieve the spasms (sometimes they are very painful), and my therapist is having me do pilates type exercises to stabilize muscle groups surrounding my pelvic floor; it seems to be helping make penetration less painful now. I also starting using dilators (just put one in and leave it for 5-10 minutes) and I think that's helping as well.

It's funny you mention not being able to ride your bike anymore, because we think that's what caused my vulvodynia. My husband and I went bikeriding a lot this past spring, which was when I started having the symptoms. I hadn't been bike riding since I was in Jr. High and never had any problems with it then. My therapist thinks that my floor suffered trauma from the recent bike riding. I think it's safe to say that I will never ride a bike ever again, even if I ever do get cured of this horrible condition. Laughing

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Re: Big Hugs and Hope

Post  noni on Fri Jan 14, 2011 3:13 pm

I just feel for you guys so much. Keep the faith.
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Re: Big Hugs and Hope

Post  Sarah001 on Fri Jan 14, 2011 7:28 pm

This is to [sara], can I ask what exercises specifically you are doing around your pelvic floor? I'm heading in that direction too and find if I exercise certain muscles around the pelvis it helps relax the pelvic floor off but areas I'm struggling to strengthen without upsetting the pelvic floor is the transversus abs and multifidus because obviously they co-contract with the pelvic floor. I can't do adductor work as mine are tight and it makes things worse so mainly I do glute medius, glute max and try to contract the transversus abs without the pelvic floor but so far I haven't been very successful at that. I was taught originally to initiate a local system contraction from the pelvic floor so I'm struggling to separate it now! Do you do TrAbs work and manage to keep your pelvic floor quiet? If so any hints on how you were taught to do this?
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Re: Big Hugs and Hope

Post  [Sara] on Sun Jan 23, 2011 10:08 pm

To Sarah001-

When I have access to a scanner I will scan my exercise sheets for you. Here are the titles at the top of each exercise:
  • Rib Cage Arms
    Twist
    Parallel Side Lean
    Swan Prep
    Single Leg Kick
    Prone Single Leg Raise
    Side Kick
    Side Leg Lift
    Inside Leg Lift
    Over/Back: "Hot Potato"
    Clam
    Bridge


When I did biofeedback therapy we found out that my abs abnormally contract and also have spasms. My pt's goal is to get the muscle groups stronger so that they work together, instead of against each other. The muscle tissue of my abs is very tight and still feels like I'm flexing even when I am at rest. I have trouble separating my abs from my pelvic floor as well when doing contractions, so I'm afraid I don't have any tips on how to separate them. Neutral


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Re: Big Hugs and Hope

Post  Sarah001 on Mon Jan 24, 2011 7:54 pm

Similar kind of things to what I'm doing, trying to correct muscle imbalances. Are you what physios term a "breath holder"? I used to do that all the time and grip with the upper abs so they always looked contracted, took alot of effort for me to stop that particular faulty pattern too! I really struggle to avoid the pelvic floor with the Tr Abs work, my pelvic floor just leaps right in there and my abs don't do much, it's very frustrating but I expect practice is the only way to get to grips with it.

Immediately after an exercise session I feel noticeably better but it doesn't last at this point but at least it's motivation to keep going. I'd be very interested to see the exercise sheet, I'm always on the lookout for more exercise to stabilise my pelvis.
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Dermatologist in Melbourne Cured my Vulvodynia

Post  angelique on Tue Feb 01, 2011 10:48 am

Please read the information I have posted on the Dermatologist and Advantan Fatty Ointment, I was in the same boat with the very harsh soaps, it destroyed the vulva skin and I was in so much pain, the Dermatologist prescribed the ointment for skin healing and Allegron 10ml for pain relief. Perhaps speak to you doctor about these medications and going to see a dermatologist.
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Re: Big Hugs and Hope

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