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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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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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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 …

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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 …

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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 …

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 …

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been prescribed pregabalin....

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Re: been prescribed pregabalin....

Post  Sebby (Admin) on Tue Mar 08, 2011 10:05 pm


Yes your right Sarah I thought of that today. Im not gonna come off the pregabalin unless I really does nothing. I will see in a month or so. I have had a good week and half with pain. Well good means the pain is medium not high.

But ive come off my period so cue flare up! at least I know thats a certain trigger. I tried the boots cotton pads, I think next period I will be brave and try tampons when Im not so heavy. The pads rub and so my vuvar is very upset today. I mean imagine if we went around rubbing a cloth all over our face 24/7 for a week! Im sure the skin on our face would be irritated to say the least!

Its so good for my anxiety that despite dizzynes Im loate to stop taking it. Oh dear I told you im a bit of a prescription drug addict lol On the plus side Im soon to be off citalopram in a months time. Im nervous bout side effects but to be honest ive been fine the other times Ive cut down so im crossing my fingers.


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Re: been prescribed pregabalin....

Post  Sarah001 on Wed Mar 09, 2011 1:42 pm

I suppse there's still time yet for both of us to have results, if we can just get past the dizziness and out of it sensation maybe a higher dose will help us. I use cotton pads but they still rub don't they? I mean it doesn't matter if they're cotton or not the mechanical rubbing problem is still there. I don't really have many heavy enough days to warrant tampons most of the time, 2 days of noticeable bleeding is the most I get then spotting for the rest so tampons just wouldn't be helpful for the light days. Damn periods, bring on the menopause!

I've had a change of heart about relaxing my pelvic floor first and decided I'd reached a plateau doing that and couldn't get any further because more relaxation set off my SI joints so I've joined you on the Glazer Protocol Sebby, started on Saturday so done it for a few days now. Let's see how we are in a couple of months time!
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Re: been prescribed pregabalin....

Post  Sebby (Admin) on Wed Mar 09, 2011 7:00 pm


Woop woop! good to have a Glazer buddy lol!

Do you keep a pain diary? A good idea to monitor your progress. Im doing the online one that I posted about Smile it does graphs and reports so you can see how you are doing over a certain time period!

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Re: been prescribed pregabalin....

Post  Sarah001 on Wed Mar 09, 2011 8:13 pm

I hadn't even thought about a pain diary, I'm a bit all or nothing though and would either not put anything in it or put loads of irrelevant crap in it!! I've written on the calendar "started Glazer protcol" though so I know exactly when I started it. I'm also remembering to do 2 sessions a day this time instead of being hit and miss and giving up after a couple of weeks. So far my pelvic floor has only got tight during activities where it usually does, stress etc. I've also noticed when I'm doing something where my abs should be stabilising me I'm actually gripping the pelvic floor instead so I'm trying to stop that. God I hope the Glazer protocol works, I'm going to be so disappointed if it doesn't!
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Re: been prescribed pregabalin....

Post  Sebby (Admin) on Wed Mar 09, 2011 9:47 pm


Yep I hope it works too! My pelvic floor is still acting drunk! or unstable as Glazer would put it but im getting there.

I am due to email him on Saturday with my two week update so will post what he says on here.

Thing is with this protocol is its very all or nothing its months or intense work before seeing results..

I had a flare up after coming off my period yesterday and today im so much better! a one day flare up! this doesnt happen! Smile Im still doing the vaseline and water thing..helps so much

Ugh I have to do my biofeedback before bed...grrrrrr oh well lol


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Re: been prescribed pregabalin....

Post  Sarah001 on Fri Mar 11, 2011 8:19 pm

I was thinking about the amount of dedication today, I bet his research gets hampered by lots of women dropping out of the program because of the 2 sessions a day for months thing. I'm determined to keep it up and I'm one week in and haven't missed a single session yet. I'm totally determined to keep going this time, sometimes I do a session before I even get out of bed. I'm pleased it hasn't resulted in a tighter pelvic floor so far, I think the sessions of biofeedback I had were invaluable in that respect because I just wasn't relaxing the pelvic floor at all. I'm now managing not to let the work I do twice a day make things worse. I am however finding it difficult to stop holding my breath while I'm doing the pelvic floor work which obviously isn't what I'm supposed to be doing!! Rolling Eyes Can't wait to see what he says on Saturday.
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Re: been prescribed pregabalin....

Post  Sebby (Admin) on Sat Mar 12, 2011 5:49 pm


I too haven't missed a single session in two weeks! am so proud of myself lol I do it just before I get up to get ready for work and before bed.

I am writing a list of things to ask Dr Glazer before I email himl lol

He did say that at leat a quater of the women drop out of the treatment after a month or so. Also the holding your breath thing. He said not to even worry about that. When I contract I can't help but hold my breath and then can breath during the relaxation part. Dont focus on the breath just holding the contraction. You need to feel a sucking up of the sensor rather than just a squeezing..as if you are trying to suck it inside of you!

Do you have the machine that lets you see how stable your pelvic floor is? with the lights? The aim is to get to the letter J on my machine and hold it for 10 seconds. As my pelvic floor is unstable it goes up and down (mostly down as im weak also)

He said it takes a lot of practise to get the nack of holding it

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Re: been prescribed pregabalin....

Post  Sarah001 on Sat Mar 12, 2011 9:43 pm

I don't have a machine I'm afraid, I'm having to just do without, need all my pennies for my imminent move! I have got a simple plastic pelvic floor educator thing though that moves if you do it right and shakes if you're struggling to hold the contraction so that's an option. Are you feeling like you're using a light contraction getting to J or a strong one?

I'm surprised he isn't fussed about the breathing, my physio is very strict about that as the pelvic floor and diaphragm should work together but it might be because I have to learn how to use mine functionally again from scratch to stabilise my pelvis. I'm a habitual breath holder in daily life too and it makes me clench my pelvic floor when I do it so maybe that's why I've been told not to do it! Rolling Eyes I'm making myself breathe at the same time as a contraction so it doesn't get to be a habit, holding my breath every time I need to use the pelvic floor that is. Leon Chaitow actually gives faulty breathing as a possible cause of pelvic floor dysfunction because of the PF/diaphragm connection. I found a really interesting article about it a while ago but can't find it now. He's got a specialist interest in faulty breathing and has branched out into the PF because of the connection. If you can find it it explains it better than I have.

Let us know how your Glazer chat goes! Wink And I'd love to hear how much of a contraction you feel you're using as that advice varies from therapist to therapist too. I did poke my muscles tonight just inside the vaginal opening and they are still seriously sore if pressed so I may have to give them a bit of an eye watering massage a few times a week too.
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