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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


Trying something different

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Trying something different

Post  Sassymel on Sat May 07, 2011 7:49 am

Hi,

I'm also a newbie to this forum! And glad to have found it. I need some spirit lifting Wink I've had Vulvadynia nearly 3 years and am so determined that it won't become 4. To be honest, I think I have this condition milder than many of the women on here. It used to be so much worse for me, but I do think I'm getting somewhere with it. The hardest part for me is the difficulty to have sex with my fiance. I love him like mad and it's so tough not being able to express that in every way...and knowing how good it was before I got this!

I see a specialist fairly regularly rather than a doctor. I was originally going to the doctor for reoccurant thrush and I'm so glad she realised whatever I had was outside of her knowledge and referred me on. I'm lucky because here in NZ my treatment, through the sexual health clinic, is heavily subsidised by the government. I feel really lucky because as I understand it that's not the case for ever country. My specialist is excellent and I have full faith in her. I've been on Nortryptoline almost from the begining but my dosage has dropped now. I used to wonder if if it was doing anything, but looking back at how painful it used to be and how it's not as bad as that now, I realise that it must be doing something!

I also see a physio and am happy with how that's going. She's taught me a number of exercises to help relax the pelvic area and my muscles. She's also got me doing vibrator work and a diaphram that I'm slowely moving up in size with. It all felt a bit awkward at first, but I'm determined to see change so I got over that.

My next step will be going to see a psycologist. I think both myself and my fiance should go, because this isn't only a physical thing and this doesn't only affect me. Our minds play such a big part on our health and having V can create a lot of frustration, sadness and the rest, as you all know, and I think it'd help to talk to someone professional about it. So it can't make things worse and I'm willing to pay what it takes (hopefully it's not too much haha) to get into a better head space. Because although I know things are improving it's such a slow process and it gets me down... My fiance is really supportive and happy to come with me. He wants me feeling better as much as I do.

My gosh, sorry, this is a novel. It's just so good to be able to talk to people in a similar position as I am. Sometimes I feel so alone in my plight!

Sassymel

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Age : 31
Location : New Zealand

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Re: Trying something different

Post  noni on Sat May 07, 2011 10:25 am

Hello and welcome !


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noni

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Re: Trying something different

Post  Mouse on Sat May 07, 2011 9:17 pm

Kia ora Mel!

I'm also in NZ. I'm glad you have found an amazing specialist. It seems to be luck of the draw in this world. I have one in Auckland who is pretty fab. Although I'm also taking this thing by the scruff of the neck. I've taken responsibility for my healing and have attacked it from all sides.

A psychologist is a great step to take. I see a sex therapist, she has several clients with this shizzer specific knowledge really helps. This thing really does your head in so unloading all the crap is essential. It's great that your partner is so supportive and willing to participate. I didn't take my hubby initially and now it's become my therapy really. You may be able to get funded therapy through your GP?

I do physio as well, no drugs though I couldn't make those work for me. My pelvic floor locks up sometimes, strange how tension shows up there. I meditate and have made significant dietary changes. I try to do anything that gives me endorphins. Yes smiling and even laughing do that! Singing is even better. I love singing but it's usually restricted to "home alone", in the car or when I'm bladdered Embarassed

We are all different so don't get caught up with comparisons. Any version of this is absolute crap. Silent illnesses and particularly ones that affect our lives so greatly are bloody unfair. It sounds like you are being really proactive in your recovery, that's fabulous!

Take care and be gentle with yourself.
V. grrrr it pisses me off that the signature I've used for decades is now the symbol of evil!!!

Mouse

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Re: Trying something different

Post  Sassymel on Sun May 08, 2011 2:18 am

Thanks Mouse. Great to hear all of that. Yeah I'm in Hamilton and yes I'll inquire at my GP about therapy funding, I hadn't thought of that! Yeah I think something that annoys me the most is that each of us are such different cases and there is no such thing as one size fits all! Not only do I want to get through this, I want every woman out there suffering to get through it...and it frustrates me no end that everything is such trial and error...

What kind of diatry changes have you mde? I've read so many theories...and I don't want to drastically change my diet if it's not worth it...but I'm making a real effort to reduce yeast, acid and sugar intake. Which really sucks as I enjoy beer, wine and baking! Sad But rather than eliminating completly I'm just doing as much as I can to replace it with something else when it suits. I'm not much of a drinker anyway so I tell myself that that helps...who knows though!

I've picked up my exercise (also to increase the happy endorphines) and have been doing yoga to help with relaxation and flexability. I was doing a bit of belly dancing for a while too and that's supposed to help with muscle tention in that area and learning to control muscles separately so I try to keep those moves up too when I'm doing mundain things like the dishes Wink

Trying to tackle it all "holistically" Wink

Sassymel

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Re: Trying something different

Post  Mouse on Mon May 09, 2011 12:49 am

Mel it sounds like you are doing some great work! It makes sense to me to look at everything you put in and do to your body.

I'm gluten free but that's because I'm lucky enough to have an auto immune disease. I'm now sugar free also which was quite an adjustment! It really works for me though. I think that if burning pain is an issure reducing acid foods is worth a shot. I hit the chocolate hard at Easter and had a major relapse, it was also period time so everything went wonky.

I'm really keen to start pilates. I used to do yoga and really enjoyed that.

We are on FB if you want to join. It's a private group, just email sebby and she will hook you up Smile

Mouse

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Re: Trying something different

Post  Aussie on Tue May 10, 2011 6:49 am

Vicki,

Not sure if pilates is such a good idea. I always used to do it before v and my specialist said that it is a bad bad idea for people with v as we have a hard enough time relaxing the pelvic floor. Alot of the moves in pilates increases ab tension and when you tense your abs you kind of cant help doing your pelvic floor... my tummy's gone to pot since i stopped pilates....so occasionaly I do a work out, and boy does my v flare the next day...it is not worth it, trust me.

Mel,

your approach sounds similar to mine and Vicki's I wish Aus medicare would help out with the costs of physio, your lucky over there. I get 5 sessions subsidised a year....I have used them all in 5 weeks. I have never heared of such a costly condition, even mum with all her medical things pays less than me a month for drugs/physio/massage etc. Keep going with it, it works! I too have come so far with the help of physio. Sex is now pain free almost all the time, mayabe a little burn afterwards but mostly great...I just can't go too wild (haha). So you will get there. My problem is I still have pain wearing jeans and even when I am wearning nothing, but sex, is pain free...in fact it is the only time other than sleeping I do not feel pain, go figure?!

Claire

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Re: Trying something different

Post  Mouse on Tue May 10, 2011 7:07 am

Thanks hon, I was going to ask my physio first. There are some pilates instructors who work alongside physios. My pelvic floor locks up as it is. Hey I'm probably too lazy anyway!

Mouse

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Re: Trying something different

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