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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 …

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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 9

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 4

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


Anyone else doing this?

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Anyone else doing this?

Post  Sarah001 on Sat Jul 09, 2011 8:20 pm

I'm currently reading a book about pelvic instability in pregnancy (I'm not pregnant I just read everything pelvic related I can find!) and there's some interesting stuff in it. It doesn't mention V but as alot of us have pelvic stability issues I wondered if anyone else was doing this: Is anyone else standing with most of their weight on one leg more than the other? It's mentioned as something that upsets the alignment of a lax pelvis and keeps the misalignment going and as we all know there's a link between V and these kinds of things. I realised I was doing it really badly and weirdly I was putting most of my weight through my worst side. Anyone else doing this? To find out you need to concetrate on what you're doing when you stand still, or use a Wii board and it will tell you!

The author talks alot about tight adductors too and says tight adductors usually equal tight pelvic floor muscles and she's right again, I've got trigger points galore in my adductors and I've only just got the left side so it will abduct to normal amounts with my knee straight so it's more the long adductors on that side and the short ones on the right. And I have noticed when I lay with my legs bent it tightens them up really badly and it shouldn't. My adductors were the reason the doctor who "diagnosed" me suggested physio as a first course of action because when she got me into examination position it looked like I was tensing my thighs really badly and I wasn't at all.

Just interesting to me, especially the weight bearing one as if I was asked which leg I use more I'd have chosen the other one but sure enough I'm putting most of my weight through the loosest SI joint and just helping keep the dysfunction going! Rolling Eyes I know some of you won't think this is a very relevant post and apologies for waffling on but I know there's a big link between V and SI joint dysfunction. Anyway, I'll stop now...! Laughing
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Re: Anyone else doing this?

Post  lolainslacks on Sun Jul 10, 2011 12:30 am

I find this really fascinating. I have been shifting my weight constantly from one leg to the other for years. I seem to be incapable of standing straight up -- my weight is always dramatically shifted onto one side. My lower back becomes very sore if I stand straight for too long, so I do this to make it more comfortable for myself.

I have a lot of problems with my pelvic floor muscles. I can tighten, but I have never ever been able top untighten. I just don't know how to relax those muscles, and descriptions of how other women do this have never helped me. Because I have so little control, they seem to have a life of their own. I am trying to use dilators every single day, but if I'm stressed, or upset, or sometimes just for no reason whatsoever, my muslces will feel a lot tighter than usual, and I am powerless to do anything about it, which really limits my progress. It seems that my pelvic 'situation' changes from day to day and I just have to wait and see what it's going to be like. I don't have vaginismus, and have been told repeatedly by specialists that I don't, so it's not a case of me having 'muscles spasms', it's just a mysterious tightening that I can't explain.

I don't know much about pelvic instability or what causes it, but I am grateful for this post. I think it is worth looking into this sort of thing, and now that I know there is a possible link I will definately be making a conscious effort to change the way I stand. Thank you.

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Re: Anyone else doing this?

Post  Sarah001 on Sun Jul 10, 2011 12:27 pm

You do sound as though your pelvis is unstable, I too do the shifting thing even when I look like my weight is balanced between both feet it isn't. The author also said to put the weight onto the heels more and feel the lower back as you do it so you can find the position that is the best for relaxing the back muscles. I'm like you and my back gets really tight and tired if I stand for any length of time but apparently our muscles aren't supposed to get tight from standing, if we stand correctly the muscles are relaxed, who knew?!! Laughing I now make a point of shifting my weight until it feels centred and checking I'm on my heels by wiggling my toes around and if wiggling my toes doesn't affect my balance I'm doing quite well! I also wonder if you have a leg length discrepancy? A pelvic rotation can cause this and it's something that would also make you shift from one foot to the other, have you had that checked by a physio at all?

I'm hugely interested in pelvic instability because I've had it for years (long before V came along) so I've done alot of research into it and consider myself to be quite knowledgeable at this point! One physio said it was a shame I couldn't get better because I'd have breezed through the physio exams!! Laughing The book I'm reading is one I bought out of desperation to see if there was anything else I needed to know and it's useless to me in parts because it's about pregnancy but great in others. It's one of the few books I've read that mentions inflares and outflares in detail and I have one of each of those and have noticed it's hard to find information on them so I'm reading it thoroughly now.

I have the same issue with my PF, I can't release it at all and it's always in spasm even when I'm trying to release it which again is related to my pelvic instability and is my body's way of trying to stabilise the pelvis. Pelvic instability has alot to answer for!
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lolainslacks

Post  Aussie on Mon Aug 01, 2011 5:50 am

Have you tried biofeedback? I did not even know how to relax my muscles down there either untill I tried this. The visual just makes your brain do what it is suppost to and you just relax the muscles. Then you can hold onto that feeling and do it without.

The machine I used had lights on it. The aim was to get the lights to the bottom by relaxing the muscles. There was a small probe too.

Hope this helps.

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Re: Anyone else doing this?

Post  Sarah001 on Mon Aug 01, 2011 12:38 pm

Yes if you remember Claire I'm the person who started with the ridiculous resting tone of 20. I got to 12 last time I went but that was November last year and I'm sure my resting tone will have crept up with all the stress I've had this year so far. The machine I was on didn't have lights it had numbers in a graph kind of setting that you watched as you did the exercises and I once managed to get to 6 but it was a blink and you'd miss it occasion, 12 is the lowest I got for any length of time which obviously isn't low enough but I have a vicious cycle going on where I stop clenching the pelvic floor then lose all stability in my right SI joint which tightens it back up and the pain makes me clench again so stabilising the SI seems to be the only way I can break that but my hypermobility issues mean that's next to impossible. I'm currently trying to get enough money coming in to afford physio again but it won't be for a while yet.
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Re: Anyone else doing this?

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