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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, …

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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 …

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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 …

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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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Women's Health Physio

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Women's Health Physio

Post  Sarah001 on Tue Aug 03, 2010 6:49 pm

Well I'm back from seeing the Women's Health Physio and she was fantastic! She took details from me and we both agreed we thought my pelvic floor would be in spasm given that my pelvic joints are hypermobile so she did a quick internal examination and found I was contracting the muscles correctly but the left side was weaker than the right and the muscles on that side were kind of twitching on and off. I have rubbish endurance of the entire pelvic floor too and struggled to hold it after 3 seconds. Then she announced she had a biofeedback machine and I could have that done today too if I wanted, I was geekily excited about this so she hooked me up.

Apparently a normal resting tone should be about 2 or 3 and mine was, wait for it, a whopping 20!! Shocked She was astounded how high my resting tone was especially as I wasn't in the least bit nervous so gave me a variety of bits to do while I watched the line on the screen but I never got it lower than a still way too high 11. My fast contractions were very strong but the release part was problematic and I couldn't release the muscles properly at all. Rolling Eyes I've got some homework to do and she's given me a card to give to my usual physio so they can discuss things she can help me with such as releasing the external muscles and I go back in about a month to see if I've managed to get the resting tone down a bit.

I'm so glad I went, it's reassuring to know my pelvic floor could well be the cause of this. This lady had read all Dr Glazer's work and understood the resting tone is the vital part and she'd also read all the work by Diane Lee who specialises in the joints of the pelvis so we had alot to talk about!! She's treated other women with the same kind of situation going on (except my HMS) and they recovered so I'm hopeful right now.

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Re: Women's Health Physio

Post  julia on Wed Aug 04, 2010 7:25 am

where does this miracle lady work? she sounds brill!

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Re: Women's Health Physio

Post  Sarah001 on Wed Aug 04, 2010 12:18 pm

In Lincolnshire, I'm really surprised and pleased, I had it in my head she wouldn't be very good and there isn't another one anywhere near close enough for me to get to. I'm so relieved she's going to be advising me. But girls, 20!! I'm still a bit shocked about that!!
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Re: Women's Health Physio

Post  naomi on Wed Aug 04, 2010 4:06 pm

thats fab!...not about the 20 score but fab about finding a possible answer!! Very Happy
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Re: Women's Health Physio

Post  Sebby (Admin) on Wed Aug 04, 2010 9:11 pm


Wow! I need to move there!! Does she know anyone in London???? hehehe

Glad you found her tho

xxxx cheers
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Re: Women's Health Physio

Post  tweety on Thu Aug 05, 2010 10:35 am

Hi Sarah,

That's great news. Sounds like she knows what she's talking about. Wow, I can't believe you were at a 20!!!!

You've got quite a bit of homework to do then.

Let us know how you progress.

*hugz*

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Re: Women's Health Physio

Post  Sarah001 on Thu Aug 05, 2010 11:26 am

Thanks Sue, I'm so glad someone else has done biofeedback before so they know how truly shockingly high 20 is as a resting tone!!
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Re: Women's Health Physio

Post  maggie on Thu Aug 05, 2010 5:16 pm


Hi. There's a very good pysio at barts hospital where i had biofeedback, i had it done over 2 yeras ago, but at the time ,can't really remember what mine was, i do remember they said my muscles were strong. I might give her a ring have it done again,coz last time i went was the beging of the vulvodynia and my head was all over the place, i'll take it in alot more this time.

maggie x

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Re: Women's Health Physio

Post  Sarah001 on Thu Aug 05, 2010 6:31 pm

That's the thing isn't it, your muscles can be strong in one way and lacking in another like my fast twitch fibres are great so no stress incontinence for me but my endurance holds start to give way and decrease after a few seconds which is partly why the spasm is there. Of course it's also possible to just have too much strength and tension too. It was totally fascinating to be able to see what was happening, I felt like I wasn't releasing the muscles very well so to have it proved with a machine was great.
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Re: Women's Health Physio

Post  Sarah001 on Thu Sep 16, 2010 7:09 pm

Well, had my second appointment with the WH Physio today and I haven't done very well so far! This last month has been a nightmare, every time I do the exercises for releasing the pelvic floor it completely destabilises my pelvic joints and they pop and click for a few hours before getting wedged in a twisted position which is not only excruciating but also makes the pelvic floor spasm again. On top of that my regular physio who was supposed to be helping me with the external issues hasn't been available to see me for an entire month and has completely messed me around cancelling all my appointments then making them for the following week and cancelling it again so I've had zero help with any of my problems this month. I would find someone else if I hadn't already seen every single damn physio in the area with no joy.

So my readings today were a slightly reduced resting tone of 18 which I suppose is progress but just not much and I managed to get the muscles briefly down to a 6 during exercises but it was a "blink and you'll miss it" kind of brief!! So not as much progress as I'd hoped for after 5 weeks of hard work. I also find it incredibly hard to remove the probe afterwards, my pelvic floor spasms around it and I can't get it out! It's really sore having to tug it out past the inflamed skin too. I actually thought I might have to ask the Physio to help me with it today Embarassed but thankfully I finally managed it.

So I've got the same pelvic floor exercises for now and have also been found to be too dysfunctional to even do basic core stability exercises (she made me do some with the probe in to see what was happening and it wasn't good!) so all my core stability work has to be stopped for the moment and she's given me a couple of firing exercises instead. On the plus side this does prove my pelvic floor is reacting to the SI joints and isn't a secondary response to the vulvar issues so it does seem likely it's the cause of my problems. On the down side it isn't responding very well because of my hypermobility issues. Catch 22. I've got 6 weeks to try again.

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Re: Women's Health Physio

Post  Mouse on Thu Sep 16, 2010 8:04 pm

I got my report from the new improved specialist she says I have a pronounced levator on the left side and suggested biofeedback. Can anyone translate that for me? The levator and the biofeedback are both foreign to me. Thanks.

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Re: Women's Health Physio

Post  Sarah001 on Thu Sep 16, 2010 8:23 pm

Levator Ani is one of the muscles of the pelvic floor so I'm assuming she means you have one tight one? You have one each side so that's what I take that to mean. Biofeedback is the use of a machine to show you exactly what you are doing with the muscles and teaches you how to contract and release them correctly.
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Re: Women's Health Physio

Post  Mouse on Sat Sep 18, 2010 9:29 pm

Owww now that makes sense, thanks Sarah. I remember her oohing and ahhing about my pelvic floor now. It's hard to listen intently when legs are in stirrups Aaahhhhhhhhhhhhhhhh!!!! She said I had bunched up muscles on the left side.

I had filled in the morning before my appointment getting a "relaxing" manicure and pedicure. Once my legs were flailing in the air I noticed all the lovely pink nail polish on my big toes has squished to one corner and I had a black ink imprint where my lovingly moisturised foot had met the writing in my shoes... nice!

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Re: Women's Health Physio

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