Vulvodynia Support
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» Hope to all my suffering ladies
Dr Glazer video consultation review... :) EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Dr Glazer video consultation review... :) EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Dr Glazer video consultation review... :) EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Dr Glazer video consultation review... :) EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Dr Glazer video consultation review... :) EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Dr Glazer video consultation review... :) EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Dr Glazer video consultation review... :) EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
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» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
Dr Glazer video consultation review... :) 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.

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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 …

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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- …

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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 …

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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

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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 …

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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 …

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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 …

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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 …

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Dr Glazer video consultation review... :)

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Post  Sebby (Admin) Thu Feb 24, 2011 9:50 pm


Yesterday evening was one of the strangest evenings Ive had! Shocked lol started off with a gas leak at mums, waiting for gas board, running to internet cafe (couldnt put mums laptop on) to email Dr Glazer to say what was happening. I thought I would need to rescedule but the gas man sorted it!

I got the laptop out and booted up Skype it was 7.15pm and I didnt think Dr Glazer would be on but he was! He had got the time wrong anyway when estimating the time difference between New York and London! He hadnt recieved my email yet and was suprised when I told me about the gas leak

Then skype kept going mental and the sound kept going so I had to keep ending the call and re calling. Finally a decent enough connection was established!

So he took a medical history, mainly things like other skin issues, muscle issues, infections, use of antibiotics, urinal issues, bowl issues etc. Then sexual history, type of pain, when it started, where exactly the pain was etc.

Im what you call a primary case, I have always had VVS and now the constant pain of Vulvodynia. I had always just thought it was just vaginsimus due to anxiety until recently. When I was 13 I tried tampons and was in such pain I couldnt use them. He asked if anything triggered it? I could only think of a yeast infection I got at 12 years old. He said his biofeedback treatment works just as well with primary cases like mine as it does with secondary cases.

He explained his thoery that the pelvic floor being unstable and going into a guarding state (after injury or infection or irritation) stopped proper blood flow to the vulvar skin and tissues and stopped the healing oxygen and other nutrients from properly healing it.

I then had to run upstairs to the bathroom and put the sensor inside my vagina (only using cooking oil as a lube)Ouch! lol then attach the electrode under my belly button and switch the machine on with the flashy lights.

You can just then pull your knickers and leggings up and remain fully clothed. I then had to lie on the sofa with my legs out and relaxed and my feet shoulder width apart and pointing outwards at a 45 degree angle.

The machine has lights running from the top to bottom from A to N. I then had to put my heels together this made the lights run up to N and sqeeze my bum cheeks and the lights did the same. both of these actions worked the pelvic floor and it was to show me that I was to keep both legs and bum relaxed otherwise it presents a false reading.

I then had to tighten my pelvic floor and to feel the sensor inside me being sucked up (dont worry it doesnt go up as the handle stops it) the lights went up to 'I' so he said to change a setting and do it again it went to J. He said my pelvic floor was weaker than average but that the treatment was more about control and not strength.

Bascially I have to learn to hold it at J for 10 seconds and then relax for 10 seconds and do this for 20 minutes twice a day. When practising I can get it to J but it goes down and up and I cannot hold it at J yet. This he said showed the lack of control over the pelvic floor and so I would be a good candidate for the treatment.

By exercising the muscle and gaining control more blood oxygen and nutrients should flow to the area in order to heal. He said after 2 months I should notice a difference but full effect can take between 6 to 9 months. Thats if I do it twice a day everyday otherwise it will be longer.

Now this is the bit I kept giggling at Laughing

He spoke about the sexual arousal system and how lack of blood flow to the area also effects this. As to have easier intercourse blood has to flood to the genital area, in order for the vaginal lips to open up, to get lubricated etc.

Also from a psychological perspective I had to desensitise myself to touching the vulval area. and to start linking it to pleasure rather than just pain. and to regain my sexual self!

I dont get pain on the clit so part of the treament is to have 3 orgasms a week! lol and to practise with a dildo once a day for a few minutes. He has suggested certain sex toys that are non irritating..I will post links to these.

Ok then he asked if I had a partner. I said no and I wasnt dating as I wasnt seeing the point. Well also part of the prescription is to start dating again! and ermmm find a man I feel comfortable getting intimate with! hehe

He said pyschologically the longer a women stays non sexual she will find it harder to get intimate again. He recommended a book for women with sexual pain disorders that suggests all sorts of ways to get intimate without intercourse whilst I am trying to get better.

He said that most men are not going to be bothered that you cant have intercourse at the moment and that they are happy with the foreplay element. In otherwords that pyschologically and sexually men are genital based (yes the brains are in the penis lol) and that they didnt care how they were stimulated (orally/by hand) they orgasm and that was that...they are pleased lol I I must admitt I do remember doing this with previous partners when I couldnt have sex!

He said that just explain to a new partner that at present you cant have intercourse but was going through treatment and could have other fun along the way

Also with all the sexual stuff he said that pain levels on a scale from 1 (hardly any pain) to 10(worst pain)it should not go beyound a 2. If it does stop and do something else.

The sexual stimulaton is to also get bloody flowing regularly to the area and promote healing! Wow the fun part of the treatment Wink

Also an intercourse tip was to get the man to stimulate a women until she felt she was going to cum and then stop and attempt intercourse. (there is maximum lubrication, blood flow and the lips open up)

I felt comfortable with him and he was very good at communicating it all simply and didnt make me feel odd

Other advice....use a spray bottle with lukewarm water to spray the vulvar after unrination and dab with non scented tissue. Then apply vasaline as a barrier. Tampons (if possible/pure cotton) are better than pads as they are not rubbing the outside. If pads use pure cotton ones also.

Ok I know this is a lot to take in guys lol it was a lot to take in for me!

I will prob notice aches and more pains for the first couple of weeks but that should pass and to email him after the first couple of weeks to discuss how im finding it.

He said to email him if I need any questions answered and he will do another video consultation in 3 months to see how im going.

I will start Saturday night. Oh and my life will now revole around my vulvar more than it ever did for the next few months!



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Post  Mouse Thu Feb 24, 2011 10:19 pm

WWooooohoooo Sebby that's so exciting! Get masturbating lady hahhahaaa!!! Owww that's such a dirty word. We may need to rename that.

Wow what a lot of great information to take in. It all sounds so positive. I posted a link in the weekend about othercourse - non penetrative ways to have sex, check that out for when you bring a poor unsuspecting boy home. Owww you've made my day! It makes sense to prompt the area into waking up. I feel I protect mine so much my whole body revolves around it.

If you need any guidance with self love check out Dr Betty (www.dodsonandross.com). You can download a tutorial with the orgasm Dr giving instructions. She says she's liberating women one orgasm at a time. I'M NOT BLUSHING HONEST.

Interesting about using tampons instead of pads. How do you think that will go?

I'm so pleased it went so well. I bet you feel great!

Much love hon, you really have made my day!
xx.

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Post  naomi Fri Feb 25, 2011 1:04 am

hahahaaaaa im so immature but this made me giggle a tad Smile Smile

u sound like ur all wired up like a christmas tree girl!!

keep us all posted...we will have to go out and find some willing males for you!! Smile tehee!

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Post  noni Fri Feb 25, 2011 2:15 am

Hey Sebby!

Im so happy for you...youre really putting in the effort! Thank you so much for sharing. I think that most of us at some point will need to address all aspects of this V issue... but did you mention electrodes?

Did that feel weird?

Did Dr Glazer recommend dilators?

Take care Smile
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Post  CamperUK Fri Feb 25, 2011 9:51 am

Sebby (Admin) wrote:
He explained his thoery that the pelvic floor being unstable and going into a guarding state (after injury or infection or irritation) stopped proper blood flow to the vulvar skin and tissues and stopped the healing oxygen and other nutrients from properly healing it.

Now. That makes more sense to me! I have never really understood why pelvic floor excersise would help with V but that explains it. It didn't make sense to me to use dilators either, not the way it was explained to me at the gynae clinic, but if you ladies have found it helps then I will give that a go too.
Have a pain free day, girls!


Last edited by CamperUK on Fri Feb 25, 2011 9:52 am; edited 1 time in total (Reason for editing : quote didn't work!)

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Post  Sarah001 Fri Feb 25, 2011 2:01 pm

I can post it on here now I know what I read is right, that's exactly what I found in that book, 60 reps of 10 seconds hold followed by 10 seconds release twice a day which equates to 2 lots of 20 minutes. Were you able to release properly? I tried to do the Glazer protocol a while back and found it irritated things because I wasn't releasing properly, when I felt the muscles just inside the vagina afterwards they were all tight and sore. I may have another try at this and see how it goes though. That's exactly what my physio found with me, my slow twitch fibres were too weak to hold a contraction for any length of time and when I tried to the line on the machine was spiking up and down so it seems the common finding is the slow twitch fibres have shut down. It makes sense I suppose as the slow twitch are the ones that are supposed to work to help stabilise during the day. I'm surprised there was no use of accesory muscles though like the transversus abs etc as it's also mentioned in one of Dr Glazer's papers that he teaches women to use other muscles to help things along but it's brilliant you've had your consultation and we can all follow his method now!

It's also great you can have another consultation in 3 months, when I looked into the same thing I was wondering what would happen if I wasn't getting on with it very well and how I'd ask him so that's another plus. When I tried it on my own I have to confess I often forgot to do the second session and often only did the one session and because I struggled to release the pelvic floor I gave up pretty quickly. I've read that this method is successful in women with primary and secondary and women with other health issues (some with fibro like me were mentioned in the book) so it seems to be suitable for most of us. One thing that biofeedback doesn't do though is take out trigger points, they need specific work on them to get rid of them so if it works to a degree but not as much as you'd like you can always add trigger point work with your dilators to the equation. Good luck Sebby! x
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Post  Sebby (Admin) Sat Feb 26, 2011 10:38 pm


Thanks Girls Smile I did my first session this evening. I feel a bit sore but thats to be expected as im shoving that bloody sensor thing up me lol but its not too bad

Went shopping today and bought coconut oil and olive oil for lube, spray bottle, vasline, etc I now have a special vulvar draw in my bedroom! I bought boots cotton pads instead of tampons as im not brave enough to try tampons yet. Bascially by using tampons you are not having a pad rubbing on your vulvar all day.

What are transversus abs? Im all so new to this. I remember him asking me to place my hand on the very lower part of my belly and feel that working whilst I was contracting. Im ok releasing just crap at holding the contraction..it like shudders inside me..in otherwords im unstable (well I always knew that!)I really have no control over my pelvic floor lol the machine lights shudder up and down on each contraction but I should get it with practise.

Yes I have an electrode placed under my belly button and Dr Glazer has recommended dilators well more dildo type..more soft and made of silcone as suppossed to be less irritating than plastic for the skin - im gonna post links for them

So girls stop protecting the area and get ermmm....some me time Wink

Now just to find the poor unsespecting man to use and abuse Wink hehe im sure he wont mind...i'll even throw in a cuppa tea after! Laughing
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Post  naomi Sun Feb 27, 2011 11:04 am

tell the guy theres a bacon butty in the deal....job done~!! Smile

well done chick ur doing so well!! we can all call you a 'wanker' now heheeeee! Smile

wish i could do all that, id just bleed though its like an open wound if i medal too much. Im sticking to the vitamin e oil for the time being me tinks!
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Post  Sebby (Admin) Sun Feb 27, 2011 3:19 pm


Haha its official Ive been instructed to become a wanker!

Do you bleed when you touch just the clit and nothing else?
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Post  saskatownv Sun Feb 27, 2011 6:51 pm

How bout that term ladies?

BTW Sebby. Great information! What an eye opener? I am scared to use Vaseline however. I have tried olive oil after urination, spraying , and patting dry. But i have read that if you are prone to yeast olive oil might allow yeast to grow.

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Post  Mouse Sun Feb 27, 2011 9:03 pm

Owwww I like the sound of ice, ice baby...!!! Flaming lips is a bit close to home!

How about almond oil? That also has vit E in it and if that doesn't work out it would work well in a stir fry.

Girls don't need penetration to have a very happy time! So getting to know your clit Embarassed if you can and having some happy times with her could lead to sex becoming a positive experience. Why are women so shy about sex? (well I know why we are) Society in general makes it ok for men to hang it all out there... quite literally. It's time to break the double standard ladies! Get wanking! Hahhaaa Naomi is really wanking for girls?

With the pelvic floor exercise is it possible that it will make things more awkward? I've found since I started physio I have pain in other areas (and not just my ass), it's like my whole body is tightening up to protect my girl bits. My V however is in a very quiet phase Razz . I think something is working. I'm hoping it's the diet. I had a friend question why I eat fruit when it has sugar in it ggrrrr!!! I doubt comparing an orange with a chocolate bar has any merit but it really pissed me off. People have no fucken idea what this is like. I felt like she was saying I was being stupid. I've got to find a way out of this mess. I should get Naom's Dad or Gemma's Mum to have a chat with her affraid

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Post  naomi Mon Feb 28, 2011 12:20 am

hahaaaa i agree the term 'wanker' is wrong for a girl but one of my mates (ian) called me a wanker the other day and it made me laugh!

i can only get off on 'La Clit'(ohhhh la laaaaa!) Very Happy (obviously never met the right guy before my bits kicked in!!) i dont think i have ever had the big O thru lala sex, not that it really bothers me as id rather have a huge......bar of chocolate (yes i am that sad!!)

After meeting up with Nadja tonight....yes girls she is real i can confirm that! we were chatting about Sebby and her consultation and gynae stuff in general and I def think i need to start de-sensitizing that area...have started with the vitamin e. It was funny though, it was a dead quiet pub and i think we scared people away with the talk of sex, lube, dark times and spirituality Smile ace times though it perked me up! you guys really are fab, i couldnt wish for better!

bed for me im poopered!

nightnight love you u all xxxx

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Post  Sarah001 Mon Feb 28, 2011 7:55 pm

Yep Sebby when he had you feel your lower abs that's the transversus abs, if you contract the pelvic floor correctly you get a light co-contraction there which is what you were feeling. I can't decide if to stick with Isa Herrrera and Amy Stein's plan of relaxing the pelvic floor first or doing the Glazer Protocol, it was too much pelvic floor use and not enough of any other muscles that got me in this mess so I might stick to relaxing for now.

Naomi have you asked about trying oestrogen cream on your skin? If it's bleeding and tearing etc oestrogen applied each night can toughen it up and stop that. You'll have to take info about using it for vulvar pain with you to the docs though probably, they're odd about giving it to women who aren't menopause age. I took The Vulvodynia Guide in wth me when I asked about it and stuck it under the GP's nose!

A nurse at the GU clinic where I was diagnosed talked about the whole desensitising process, unfortunately my inflamed puffy skin goes from about the 5 and 7 o'clock area up in an upside down horse shoe kind of shape so right below the clit which means any friction there is going to make my skin worse (believe me I tried after she told me to!). Good luck with that though Sebby.

Mouse what do you mean when you say PT is making other stuff worse? Are you finding it's making muscles around the pelvis sore? Are you doing work on stuff around the pelvis and relaxing the pelvic floor or doing lots of kegels? I can easily set my sciatic nerve off with a few too many clamshells etc, is that the kind of thing you mean?
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Post  Sebby (Admin) Mon Feb 28, 2011 10:02 pm


Thats perfectly normal Naomi, the majority of women do not orgasm during intercourse (yep its way over rated lol) The only time I have ever orgasmed during intercourse its by using the CAT position, look it up its not as odd as it might sound! just a simple variation of the missonary that allows the mans pubic bone to rub on your clit..oh this forum is getting more and more x rated lol

I might try another oil though as I deff dont want more bloody yeast! I have a tub of coconut oil but havent opened it yet..does it go hard when cold? thats what someone told me and I might need to warm it up to get it runny?

Ive deff noticed the contraction in the transversus abs but my bum tightens up a lot and I think too much, as my pelvic floor is weak. I have to do more pelvic floor and less bum contraction! Although I'll have a great ass after all this Wink

Its also great to see more meet ups! Smile

Right my nightly bio-feedback is calling grrrr lol I was having a microwave delievered this morning between 7am and 12pm. I woke up extra early to do the bio feedback...oooh I was a grumpy mare!! muttering to myself in the kitchen whilst waiting for the kettle to boil!

The vasline is working a treat noticed less rubbing today Smile

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Post  Mouse Tue Mar 01, 2011 9:30 am

How's the wanking going Sebby?

You can have great orgasms during sex IF you have clitoral stimulation. AND my friends, multis get a lot easier when you know what you are doing! Oh lala!!! I'm telling you this because I have just discovered that little fact. So "wanking" my friends is how you learn how to do that. You need to get to know what you like before taking it to an audience. We may be getting ahead of ourselves here but I learned most of this from Dr Betty. I got to this grand old age before I found out ........... FFS!!!

I use coconut oil, you can just rub it between your fingers. Remember it is oil so don't get it on anything.

Sarah, my whole body is clenching up. I can't release at physio either, well I think I have but she disagrees. My V is much better though. I think the diet is really making a difference Very Happy

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Post  naomi Tue Mar 01, 2011 5:46 pm

hahaaaa u beat me to it Mouse! I was wondering how the wanker was getting on Smile Smile

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Post  Sebby (Admin) Tue Mar 01, 2011 8:40 pm


Ha! I got one more to go this week lol but Im really not in the bloody mood! Grrrrrr (got carried away Sunday and got 2 out the way hehe)

Gotta rev my bloody sex drive up!! Any ideas??? lol
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Post  Mouse Tue Mar 01, 2011 10:54 pm

Hmmmm fantasy involving that guy in your profile pic???

Ummm when you say you got 2 out of the way, what are we talking about missy? Get on to Dr Betty's site and download the "how to have an O" tutorial, that's magic! Very strange concept to start with but we're grown ups... well some of the time Embarassed

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Post  Sebby (Admin) Wed Mar 02, 2011 7:05 pm


haha! Fantasy involving that guy in my profile pic, sorted out my 3rd alright!

I will deff have a look at that site Mouse Very Happy
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Post  naomi Thu Mar 03, 2011 1:59 am

heheheeeeee u do crack me up sebby Smile lie back and think of england!!! Very Happy
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Post  Mouse Thu Mar 03, 2011 6:16 am

Hahhaaaaa that's so funny!!! I can't wait to tell my therapist I'm helping women orgasm! That may involve a whole other type of therapy.

You're such a swot with your homework love! How's the diet going? I think it's really working for me, I'm bloody hungry a lot though with all this bloody sacrifice I was hoping to lose some weight!

Mouse

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Post  Sebby (Admin) Thu Mar 03, 2011 7:58 pm


Ha ha i've always been a swot since school! I haven't yet missed a biofeedback session..well im sure at some point i'll wake up late for work and I can't do it on the bus! Laughing

It is hard cutting out the sugar and wheat products. Until now I didnt realise how much stuff has sugar and wheat in it! Im doing better than I thought tho (although I have to have a little piece of chocolate a day otherwise Im sure Id die!)

One of our Managers brought in cakes, doughnuts, croissants etc this week..like loads of em! (im sure he is trying to make us all fat!) before I would not have been able to resist but I did! Smile Ive realised how much my previous diet was made up of white flour and sugar!

Im not losing weight tho..my stomach has really bloated out since the pregabalalin Sad im not sure why either? dunno if its fat, water or air? lol I will ask my doctor
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Post  Hoping23 Thu Mar 10, 2011 11:17 pm

Hi Sebby,

Where did you get your biofeedback contraption from??

Thanks,

Hannah

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Post  Sebby (Admin) Sat Mar 12, 2011 5:31 pm


http://www.vulvodynia.com/Store/Products/Featured.htm

This is where I got it! Its Dr Glazer's site

Yes its expensive but you get a video consultation with it, email support and im having another consultation with him a few months into my treatment! Considering how much private treatment is over here its a bargin!

You can have a read of his biofeedback articles on his site

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