Vulvodynia Support
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» Hope to all my suffering ladies
first time with dilators..your thoughts please.. EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
first time with dilators..your thoughts please.. EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
first time with dilators..your thoughts please.. EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
first time with dilators..your thoughts please.. EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
first time with dilators..your thoughts please.. EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
first time with dilators..your thoughts please.. EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
first time with dilators..your thoughts please.. EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
first time with dilators..your thoughts please.. 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!
first time with dilators..your thoughts please.. 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


first time with dilators..your thoughts please..

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Post  Sebby (Admin) Tue Jan 11, 2011 8:02 pm


Hi guys

Well I tried with the smallest dilator last night. Was nervous and couldnt relax that well but I did manage to insert it with out too much trouble I used lots of lube anyhow.

Well I did it for about 15 minutes, turning it in circular motions like grinding is how they described it on the instructions. Cant wait to see the physical therapist to get more direction tho.

I think I over did it! I expected to feel pain and sore after and the next day and yes today has been horrible so I wont be doing it this evening. I will only do it for 5 minutes next time and much more gently this time!

Anyway all I can describe is that Im extremly tight at the top of my vagina! might as well be steel and not tissue up there! not supprising as I was very nervous and I havnt had regular sex for nearly 2years.

Anyway this really got me thinking that it is my pelvic floor that is causing all this..so bloody tight and stubborn! been like that all my life and sex, examinations, tampons have always been difficult so I have always known I had vaginismus but I kinda managed till vulvodynia flared up 2 years ago.

I knew so little about all this pelvic floor thing and doubted it at first as drs kept looking at me funny when I mentioned it. They were all about drugs and creams.

Im sitting down (ouch! lol) to write my letters to the local womens physios to see which one feels they can treat me...

In the meantime I'll just have to be gentle

Also I have my bio-feedback equipment being delivered soon and a video conference consultaion with Dr Glazer soon so here we go!

Sebby
xx
Sebby (Admin)
Sebby (Admin)
Admin

Posts : 750
Join date : 2009-12-03
Age : 43
Location : London UK

https://vulvodyniasupport.forumotion.net

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Post  [Sara] Wed Jan 12, 2011 1:47 am

Pelvic floor dysfunction is a biotch. Suspect

My therapist told me to just start out inserting the dilator in and leaving it, for atleast 5 minutes and adding on a few more minutes each time if I have little to no pain. With my floor being so spasmodic and tight, she thinks that if I try moving and stretching things with the dilators that it may mess things up a bit and that it would be more helpful to just stretch the tissues by leaving the dilator in one place. When I started having symptoms most of my pain was at the opening, but after using the second size dilator (and through internal physical therapy) I actually have pain inside somewhere deeper as well. I think mine might be pure steel up there, too. affraid

I have had one session of biofeedback therapy and my therapist found out some interesting things. Of course, my contractions are irregular and weak, and when I am at rest there is still muscle activity from the spasms. She had an electrode on each butt cheek, one on either side of the "la-la" opening (that one's for you, naomi!), and one on my lower abs. My muscle groups don't work together like they should during contractions, and when I am at rest, my abs are so tight. Biofeedback therapy can be very helpful. It was neat to see exactly what my muscles were doing, seems like they all have minds of their own...why can't our bodies just work right? Rolling Eyes

[Sara]

Posts : 26
Join date : 2011-01-01

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Post  Sarah001 Wed Jan 12, 2011 11:12 am

I'm really excited that you have the Glazer machine and web consultation coming up! I emailed him before I started with my biofeedback and almost went for it myself. I've been trying to find out what exactly the "Glazer Protocol" involves and found some info in a book preview online but I'm not sure if it's correct. I won't post here what I found in case it's wrong (I don't want anyone to think it's right if it isn't and do the wrong stuff!) but once you've had your appointment with him I'd be really interested to see if he gave you the exercises the book said he would.

As for dilators I think just inserting it for now is a better option, you can build up really slowly to moving it around and don't have to make yourself loads worse in the meantime. I found the dilators increased pain to begin with too and you just have to work out what you can stand. You could do some external work with a tennis ball first to loosen the pelvic floor a bit, you can put it under the perineum or along the edge of the sacrum and place your weight on it will hit them a bit too. My physio told me to do 10 quick flicks with the emphasis on release if I needed to relax the muscles in a hurry, you have to make sure you do the release bit though or obviously you just make things worse!

Can't wait to hear about your web appointment!
Sarah001
Sarah001

Posts : 1164
Join date : 2010-06-11
Age : 50
Location : UK

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Post  Sebby (Admin) Wed Jan 12, 2011 8:56 pm


Thanks Guys, I will definitely be just insterting it and leaving it for like 5 minutes or so to start with!

I was due a flare up anyway as I have just come on my period early so its not suprising I set everything off!

Dr Glazer has emailed me and I have to download skype. Gonna do it on mums laptop as she has a webcam and I dont, just need to check if her one has a microphone..am a bit confused by it all lol.

As soon as I get my equipment through I can sort out the appointment

Will let you know how it all goes!

Sebby (Admin)
Sebby (Admin)
Admin

Posts : 750
Join date : 2009-12-03
Age : 43
Location : London UK

https://vulvodyniasupport.forumotion.net

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Post  Aussie Thu Mar 17, 2011 10:33 am

I find it helps me sleep if i insert the diolator and fall asleep with it in. I think the muscles relax most when your are just about to fall asleep so this is when I do my diolator work. Also I am suprised there isn't a therapist mentioned doing dr glaziers biofeedback program in the UK. There is here in Australia but he charges a fair bit.

Aussie

Posts : 230
Join date : 2011-03-15
Age : 35
Location : Queensland, Australia

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Post  Sebby (Admin) Thu Mar 17, 2011 7:30 pm


There isn't a practitioner of his protocol in the uk, I even asked Dr Glazer myself! The UK is so behind is embarrassing!

Have you fallen asleep with it in? Id be too scared to do that...but im not sure why lol I do toss and turn quite a bit so who knows what would happen lol
Sebby (Admin)
Sebby (Admin)
Admin

Posts : 750
Join date : 2009-12-03
Age : 43
Location : London UK

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Post  Aussie Fri Mar 18, 2011 1:33 am

Sebby,

Dr Glazer would say that, he wants your custom remember. Why would he tell you someone is practicing in the UK when you can buy his stuff off his website and he gets the money? The guy I am seeing told me he was the only one in Australia dong this time of work. I have since discovered this is not the case. I have managed to find a women's physio with heaps of experience in treating v and high tone pelvic floor dysfunction. I have an appointment today.

I do fall asleep with it in. Sometimes the pain is so bad it's the only way to fall asleep. You wouldn't break it by rolling over on it i have dropped mine on a tile floor and they somehow bounced?! Give it ago you may get some relief!

Claire

Aussie

Posts : 230
Join date : 2011-03-15
Age : 35
Location : Queensland, Australia

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