Vulvodynia Support
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» Hope to all my suffering ladies
been prescribed pregabalin.... - Page 2 EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
been prescribed pregabalin.... - Page 2 EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
been prescribed pregabalin.... - Page 2 EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
been prescribed pregabalin.... - Page 2 EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
been prescribed pregabalin.... - Page 2 EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
been prescribed pregabalin.... - Page 2 EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
been prescribed pregabalin.... - Page 2 EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
been prescribed pregabalin.... - Page 2 EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
been prescribed pregabalin.... - Page 2 EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 2

Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

Comments: 11

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

Comments: 0

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 3

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3


been prescribed pregabalin....

+2
Louise
Sebby (Admin)
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Post  Sebby (Admin) 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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Post  Sarah001 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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Post  Sebby (Admin) 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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Post  Sarah001 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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Post  Sebby (Admin) 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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Post  Sarah001 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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Post  Sebby (Admin) 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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Post  Sarah001 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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