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» What's next?
Tue Apr 24, 2018 4:01 pm by jennyk2

» Pain management - what works for me
Tue Apr 24, 2018 3:41 pm by Jo44

» Share your Vulvodynia Story and become a member of the Global Anthology!
Mon Apr 23, 2018 10:44 pm by smyerskelley

» If it helps anyone else
Mon Apr 23, 2018 6:36 pm by VH7797

» Cured, cyst in foot
Mon Apr 23, 2018 4:06 pm by Guest

» HELP!! Topical cream?
Sun Apr 22, 2018 5:44 pm by emalita

» The pain CAN get better - What's worked for me
Sun Apr 22, 2018 5:32 pm by emalita

» Custom made leggings?
Sun Apr 22, 2018 4:52 am by CatJones

» Please tell me this can get better
Sun Apr 15, 2018 11:31 am by amf329

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 4

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 3

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14

Lidocaine with condoms?

Wed Mar 21, 2018 10:44 pm by AEM1

Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

Comments: 1

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: 23

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

Comments: 0

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

Comments: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3


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*

Sue

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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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