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Looking for a friend IRL; LA/OC

Tue Jul 18, 2017 2:51 am by crypticcalico

Hello!

I am hoping to find a friend in the LA/OC area that I can meet up with in person. I live in Long Beach, California and I am willing to drive a bit to meet. The only person that I've told about this is my doctor(s) and someone who couldn't wrap their brain around it. It would be nice to be able to talk to someone else who understands.

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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 …

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Owner of vulvodyniSuppoet.com

Wed Jul 19, 2017 10:28 pm by LaurenVV

Hi, I started vulvodyniasupport.com at the age of 28.
I was a leader when there was no help, no forums etc.

As I went on my path, I found acupuncture, herbs and time helped me recover.
Most never do.

I met a wonderful woman named Hanna. She was a patient and became a support leader. She lived in FLoroda.

I have moved on from the support world and found a career that allowed
Me to bring my …

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anyone from southern california in here?

Tue Jul 12, 2011 6:43 pm by Melissa777

Hi Im just wondering if anyone here is from so cal- USA
I am in san diego- but from LA!!!

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Anyone else try Cold Laser therapy/ Low Level Laser Therapy for their vestibulodynia?

Tue Jul 04, 2017 9:01 am by Tired89

Hello everyone. It's been quite a long time since I've posted. I've been extremely depressed and bottling it all up. I've been seeing a pelvic floor therapist (it's only been 4 visits) for my provoked vestibulodynia and the only reason she can get inside of me to do myofascial release and to use the dilators is because I use BLT (benzocaine, lidocaine, tetracaine) ointment on my vestibule prior …

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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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New member

Sat Mar 18, 2017 7:37 pm by Lisa1627

Hi ladies. I am new to the forum. I have had what I think is vulvodynia caused from hsv 2. So not only do I have the burning vag but the constant feeling of being contagious. I can honestly say that I hate my life and myself right now. There are days when I think I would rather be dead. I tried the amitryptline and it helped but if it's only making my brain think I don't have pain then it's …

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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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Recovered from Vulvodynia

Thu May 04, 2017 9:42 pm by chancesunny

Hey everyone,

Im a new member on this forum and wanted to share my story so I can help anyone who is feeling helpless. Maybe what worked for me can work for you. I'll try to make this short so you can go get better!

I had vulvodynia for about 3-4 years. In the beginning, it started with pain that I thought was just a yeast infection and then I thought it was a urinary tract infection or …

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Hi Im from Australia :)

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Hi Im from Australia :)

Post  emma on Sat Jan 08, 2011 1:08 am

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 anything is going to work.
I also have urethra sensitivity and if this cream works it will help that condition also. FINGERS CROSSED. I should know in about 2 weeks time.

I just wonder why this condition has to exist. It makes life so frustating!

Anyway if there is anyone in Melbourne, Australia I would love to meet up for coffee Smile

Love to all of you. I know how hard it is, people who dont know that you have the condition have no idea that you are constantly worried and people who do know you cant really understand the extent to how deeply it affects you.



Last edited by emmmielou on Fri May 23, 2014 2:29 am; edited 1 time in total

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Re: Hi Im from Australia :)

Post  Sebby (Admin) on Sat Jan 08, 2011 3:30 pm


Hi and welcome to the fourm Emma

I have not heard of that treatment. Its ami then in the form of a cream? This is something that I may just look into as I cannot take ami in pill form just yet until I can come of citalopram (im on that for anxiety).

A 50% sucess rate sounds good and I hope it gets even better!

I just had a general nerve block but It has not worked so I will try a pudendal block and see if that is any better.

Am also gonna get refered for physical therapy and have ordered a set of dialators. Another member is on ami the pill form and said that with using the dialtors she is getting pain free days. So sometimes a combination of treatments often seems to be the way to go.

I will keep my fingers crossed for you and let us know how it goes.

I have just sent out a newsletter to memebers and will forward this to you.

I have also set up a secret facebook group for members of the forum and the newsletter will tell you more

Take Care

Sebby


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welcome!

Post  [Sara] on Sat Jan 08, 2011 3:41 pm

Hi Emma!

I just found this forum not more than a couple weeks ago, and it has been such a relief and blessing. If you weren't oceans away, I would meet up with you (I'm from the US). Laughing

I haven't actually tried that type of cream yet; so far in physical therapy she has just used muscle relaxation and strengthening techniques. Oddly enough, doing some pilates type moves for my thighs and core has already improved my condition some. You can read more about my vulvodynia story here. The most recent addition to my therapy are dilators. I have only used the smallest one a few times (just insert and leave it in for at least 5 minutes), which is only about the size of a pinky finger. I'm supposed to use the next size up soon and I'm a little nervous.

Again, welcome to the forum! The love is mutual! I love you

Sara

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Re: Hi Im from Australia :)

Post  Mouse on Sat Jan 08, 2011 8:18 pm

Hi Emma, I'm at the bottom of the world also not quite close enough for coffee but we are almost awake at the same time so if you join the FB group that would be great... phewww great sentence structure! I'm in New Zealand, I lived in Melbourne when I was 18 and LOVED it! I go back as often as I can to shop.

I've been on this journey for nearly a year, it's exhausting but my pain is better at the moment. I have generalised unprovoked V so pain all the time. I tried a numbing cream in the early days which was vile but I am going to talk to my Dr about other options. Actually I still haven't told my specialist I kicked the drug habit. I got really ill in October and the brain fog just added to the struggle of trying to function "normally".

I hope you are having lovely sun filled days. I'm trying to focus on improving my reaction to the pain and have been reading a really great book about harnessing negative thoughts. It's a shame I didn't read it before I ruined New Years by saying I had nothing to be grateful for in 2010... my actual words were "it was shite from start to finish". My husband looked like he'd been kicked. I then went on to detonate any hopes for 2011. You can see why I need to find a guru. I want one of those singing dancing ones Smile That could be fun.

Take care, the FB group is fun and you can see what we all look like. It makes me feel a bit old but I failed to grow up so that works.

xx.

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Re: Hi Im from Australia :)

Post  emma on Sun Jan 09, 2011 7:02 am

ohhh loved your replies Smile

sebby, how do i find this facebook group!? I forgot to tell everyone that im 24 and i dont have pain all the time, only when i try to use tampons or have sex. Its so frustrating. Evidently 1 in every 100 people have some type of vulvodynia and i dont know how you guys can handle having the pain all the time. Is it just dull pain and it gets worse if you try to use tampons? if this cream doesnt work im going to have the surgery but i dont know the implications of it yet.

Sara, I tried the physiotherapy for 6 months and it didnt work for me! maybe slightly but not enough and i really felt as though the man who was doing it was just after money. I dont actually think he was all that caring and once he hurt me and i told him to stop and he kept going and i actually hated him from that point onwards. Instead of saying that it wasnt working he tried to cover it up by saying that i had to have thrush and even though i had it checked he was like no you definately must have it. I went back to the gynacologist in melbourne who specialises in vulvodynia and he prescribed me the cream. Its brand new and they are trialing it in the USA. So im quite lucky to be apart of it. This option wasn't around a year ago. I will know in about 2 weeks whether it has worked or not! So anyway this psychologist could have just saved me all the worry and just told me to go back to the gynocologist. I think he was just exploiting young girls who would do anything to fix this sensitive problem.

Another fun fact about vulvodynia, i dont know if you guys know this but most of us that have it have fair skin, is this the same for you all?!

One more topic id like to bring up. How do you go with boys? i mean, i tend to keep my distance. I just feel like im going to disappoint them and i also feel like i dont think i could handle it if thats the reason why someone didnt like me. My previous boyfriend was the one who said go to the doctor and get some answers and alhtough he was great and understanding and never ever made me feel like it was an issue, our personalities clashed, but now im just worried.

anyway, wheres this facebook group!? im dying to find it now!!

lots of love

em xo



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Re: Hi Im from Australia :)

Post  emma on Sun Jan 09, 2011 7:09 am

who do i have to add to see the facebook group?!

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Re: Hi Im from Australia :)

Post  Sebby (Admin) on Sun Jan 09, 2011 9:53 am


I have sent you an email Emma about joining the facebook group

xx
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Re: Hi Im from Australia :)

Post  naomi on Sun Jan 09, 2011 2:01 pm

Heya! pleased to meet you! not the best way to meet (understatement of the century!) Im naomi and live in the uk so no coffee im afraid. I could kill for a starbucks right now...mint soya latte yummmmm.

my story is in the link below..mines seems to be more a skin inflammation, not the sharp pains a lot of woman talk about. Like a iron burn but down there.....fecking sore anyhooz.

I lost my job last year due to this so claim benefits blah blah blah, tis rubbish.

Just trying to keep my head above water really which is a daily struggle for me...i think too much too which is annoying as it gives me brain ache Smile Also the drinks last night didnt help either Smile

lovely to meet you hun. I havent been on here much lately as i keep using the facebook group more.

http://www.vulvarvestibulitisrelief.com/case-studies/64

xxxx

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Re: Hi Im from Australia :)

Post  Sarah001 on Mon Jan 10, 2011 7:55 pm

Hi Emmielou. Please don't write off physiotherapy because you had a therapist you didn't like, how were you supposed to make progress if you didn't like him? You can't relax if your therapist is awful! I'd suggest seeing a female one instead, they understand better because pretty much everyone's had a painful yeast infection at some point. I've seen a variety of male therapists for my pelvic joint pain and they were all useless, men just don't get it I'm afraid!

I don't think Ami in cream form is available in the UK yet, I tried to find out once and also looked at Gabapentin cream and the info I found said it isn't prescribed in the UK at this point so it looks like we Brits may well be out of luck on that one!
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Re: Hi Im from Australia :)

Post  emma on Mon Jan 10, 2011 9:09 pm

This physical therapist is the only one practicing in australia that specialises in vulvodynia. So i didnt have much choice and considering that hes the only one, he charges through the roof.

I did an internet search on the guy because to be honest, i found him a little creepy. It came up that a girl had sued him because she thought he had overstepped the boundaries.

Anyway to cut a long story short my gynaecologist recommended that i dont go back because in 6 months there was no real change. My head says relax and my body relaxes then tenses. argh so frustrating

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Re: Hi Im from Australia :)

Post  Mouse on Mon Jan 10, 2011 11:01 pm

Hi Emma,

Can you find one that specialises in pelvic floor disfunction? I live in a small town (well it's a city but I just like the mellencamp reference) and there are a number of womens physios. There's actually one across the road from my house! I'm going to her. I see her arrive at work most days she looks ok. I had heard from a few people that she's a bit rough with a bad bedside manner but I've since spoken to a woman I worked with who has a pelvic floor issue from having a baby and she said she was great ....phewwww! I also know that she offered Nicki the opportunity of seeing her at the hospital and not privately so it was free for her. Owww and I also spoke to her on the phone because I looked after the baby while Nicki went to the hospital apptmnt and she phoned because Nicki was late. So she sounds nice and looks ok. I think it's a date! I did snigger when she said it was Jane Bond from the incontinence clinic - I'm only human! And then I got vulvodynia so kharma is a bitch!

Have a hunt around. I'm sure there will someone with nice manners and the right experience Smile Maybe this twat didn't know what he was doing anyway!

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Re: Hi Im from Australia :)

Post  Sarah001 on Tue Jan 11, 2011 1:31 pm

All you need is a Women's Health Physio as they deal with all kinds of pelvic floor dysfunction so if pelvic floor spasm is your problem they would be able to tell and help you learn to relax it. It doesn't matter if they specialise in vulvodynia, it's the pelvic floor knowledge you need. I used to have mine clenched all the time and had no idea I was doing it but it's not something anyone else can stop you doing, it's pure mind over matter I'm afraid and I used to check in every few minutes then make a point of relaxing it (I was always gripping with it at that point!) It's important to correct faulty breathing too as holding your breath also makes the pelvic floor rigid.
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Re: Hi Im from Australia :)

Post  jules on Thu Jan 13, 2011 11:54 pm

Hi Emma,

Welcome! Sorry about your condition. I'm in the facebook group. just posted about my recent trip. i would love to meet you for coffee, but the drive would take months. i live in the US. nice to have you on board in our facebook group. i have generalized vulvodynia...all over..so, i can't sit on a chair etc. i have had great success w/ meds. i am on three diff. kinds..gabepentin, lyrica and just added cymbalta. i swear by lyrica in combo w/ gabepentin..they help a lot i tried the p.t. for awhile but dropped out. my pelvic floor is in pretty good shape. see you on facebook.

Julie

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Re: Hi Im from Australia :)

Post  tweety on Sat Jan 29, 2011 3:03 am

Hi Emma,

I'm a Melbourne gal.. so happy to catch up. I've just asked Sebby to add me to FB.. so yeh =) I'm 28... turning 29 in a few months

would be so nice to catch up wif a fellow sufferer (sorry couldnt think of a better word)... hope I don't bring you down... am quite emotional about this topic. And having just come back from hols... I hated the feeling of coming back to reality and all of this... sighz...

i read part of your post about the physical therapist and I have a feeling I know who you're talking about. i think I went to the same guy too. Charges and arm and a leg... I quite after a few moths cos I just didn't feel like I could trust him.

Anywayz, hear from you soon!

Cheers,

Sue


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I'm Cured of Vulvodynia

Post  angelique on Tue Feb 01, 2011 6:28 am

A Dermatologist in Melbourne Australia cured my Vulvodynia, below are the details I hope it helps some of you, as this illness is so debilitating and painful, I nearly went out of my mind with pain.

Contact your doctor and have him organise a referral to a specialist Dermatologist that should be able to help you, if your in Victoria contact, Josephine Yeatman, Dermatologist, 154 Grimshaw St, Greensborough, VIC, 3088, Australia, t: (03) 8418 0193


Ask your Doctor about ADVANTAN FATTY OINTMENT in the meantime and see if he will prescribe it for you, then start applying this to the Vulva area ONLY at NIGHT when going to bed, this is very important, use sparingly, this is even more important as it can thin the skin with prolonged use and you don’t want that part of your body thinning do you now.
I used ALLEGRON, 10ml, also prescribed by the Dermatologist, one at night, or half a tablet at night only, this will desensitise the nerve endings and give you pain relief, I was amazed when I went to the Pharmacist for this medication and he asked me is it for pain relief, even though this medication is an anti-depressant, it is widely used for pain relief, the dosage is extremely low, so even if you are feeling a little down with this whole situation, it might help you feel better over all.
Use lubricants. If you’re sexually active, apply lubricants before and while engaging in sexual intercourse.
Look for triggers and avoid them. The triggers that can make vulvar pain worse tend to be different for each woman. Your observations of what causes you pain are important and then tell your doctor or dermatologist
Use only white, unbleached toilet paper and 100 percent cotton sanitary products.
I couldn’t use tampons I had to use pads, as it was to painful to insert tampons
I also only wore cotton panties, this lets the skin breath and did wear panties when I went to bed again to let the skin breath and heal with the medication

Dont’s

Don’t use Monistat or Canestan creams or other thrush treatments, if your doctor has examined you and your tests prove you dont have thrush then you will only make the Vulvodynia worse, the thrush creams irritate this area terribly and will prolong healing of the skin
Don’t take Keflex or other urinary tract tablets, if you have been tested and no bladder infections show up then no point wasting your money, the urinary tract is irritated because of the damaged skin and swelling, this will ease as the Advantan Fatty Ointment starts to work on healing the skin
Avoid hot baths. Spending time in a hot tub may lead to even further major discomfort and it will prolong health of the vulva skin
Avoid excessive hygiene. Don’t wash or scrub the affected area harshly or too often can increase even more irritation. Instead, use plain water to gently clean your vulva and pat the area dry.
If you are now using Advantan Fatty Ointment don’t wash it all off in the shower, try to keep some there during the day, however DO NOT reapply more as it will make the skin rub to much and trigger things off again, this ointment can only be used when you are resting and a sleep at night
Don’t use to much of Advantan Fatty Ointment you must use it sparingly and a very small amount goes a long way, once it comes in contact with the warm skin of the vagina it instantly melts down and it covers a lot of area, you may like to use a cotton wool bud to apply the ointment if you are very sore
Avoid riding bikes or horses until you are feeling better, exercising will be very difficult, I could barely even sit let alone walk around.
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getting help in Melbourne

Post  Bee on Fri Feb 11, 2011 11:54 am

Hi Em

I'm in Melbourne too, and don't worry, that horrid-sounding expensive physio guy is NOT the only one in Melbourne specialising in this! Ask your GP to refer you to the Vulval clinic at the Women's Hospital. Takes a few months to get an appointment at first but once you get in, they put you on a program with a mix of the gynacologist and one of two very lovely women phsyios who deal with women like us all the time. They're really gentle and understanding, but also very matter-of-fact, with a good sense of humour and make you feel a lot more normal. And the appointments are all free, covered by Medicare (you just pay for the dilators and meds if you want to go on them, but they're not expensive). I've just started with them so haven't really made any progress yet but at least I've started so I'm feeling better about it all - and the doctors and phsyios give me the feeling that they're determined to work with me for as long as it takes to get this thing sorted.


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Re: Hi Im from Australia :)

Post  Stompy on Mon Feb 14, 2011 12:38 pm

Hi Em, Bee, everyone

I am in Melbourne too. I have just found and immediately joined this forum. I've been suffering with this condition for about 10 years, from when I was about 27 years old.

Like Em, I have been to the same guy and did biofeedback - he's actually a psychologist, not a physio. I did get some results, but then hit a plateau after 6 months... no further improvement. So gave up, as it was costing $200 per month!

That was over 5 years ago. I have had 2 kids since and am now finally starting back on treatment. Only because my GP was doing a pap smear and I warned her that it was going to hurt me. So she strongly encouraged me to start treatment again. She referred me to the Vulvar disorders clinic at the Royal Women's Hospital (as Bee mentioned in her post).

I have had 4 appointments so far - one with a nurse practitioner who 'triages' patients, then 2 with a sexual counsellor and one with a lovely female physio. I see the physio again in a few days. It seems to be going well so far, though I feel I have a long way to go. It is great that the provide a wholistic approach. When I was seeing the aforementioned Psychologist and my gynaecologist, they were only looking at the physical condition, not the emotional side. After 10 years of painful sex, there is a lot to deal with on the emotional side.

I'm glad to have discovered this forum. And Em, I'd be interested to catch up with you some time.

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Re: Hi Im from Australia :)

Post  Sebby (Admin) on Mon Feb 14, 2011 9:46 pm


Hi Stompy and welcome to the forum Smile

Sounds like a good clinic there, I do hope the treatment can provide some relief for you!

It is great they provide a sexual counsellor! We could really do with something like that in the nhs..damn nhs! lol

Im currently trying Pregabalin and soon bio-feedback but taking it one step at a time as I often find it overwhelming!

If you dont mind me asking, how did you manage to concieve two children despite the Vulvodynia?

Im not currently in a relationship but am thinking about dating at some point.

I have never had intercourse that wasnt to some extent painful or uncomfortable. I had Vaginismus since I was a teenager and I now also believe I had vulvar vestibulitis to a certain extent with touch or penetration. I just thought it was all anxiety until I developed the pain constantly

Take care and let us know how your treatment progresses


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Re: Hi Im from Australia :)

Post  Stompy on Mon Feb 14, 2011 11:12 pm

Hi Sebby

Thanks for the welcome - it's great to find this forum.

As for conceiving my two kids... well it turns out that I am extremely fertile. So when we decided to try and have a baby, I only had intercourse 2-3 times (over the course of one week!) and I got pregnant... and I wouldn't be surprised if I was acutally got pregnant after the first time. It was painful but I just had to grit my teeth and bear it. I think my vulvodynia may be less severe than for some other women, as I found the most painful part of sex was the initial penetration. Then after a few minutes, the pain seems to less, or I get used to it, or something? However, the residual burning pain was worse over the following days. Anyway, that is how I did it, and the same thing when conceiving my second child.

Apart from those few times, I haven't had intercourse with my partner for years. The ongoing vulvodynia has caused my libido to be non-existant. I had decided that I would probably never have sex again and didn't even miss it.

I think this is why the Women's hospital clinic with it's inclusion of sexual counselling as part of the treatment is so important. I urge anyone who has given up on sex to seek counselling - it might even be a better to start with this rather than the medical/physio treatment.
There are psychologists who specialise in sexual issues, so you can see them privately.

Also, my counsellor recommended a book - Good Loving Great Sex by Rosie King (www.drrosieking.com.au). I read (devoured!) this book and it has completely enlightened me.

I am so lucky to have a very loving, supportive, patient partner. I can only imagine that it must be really hard to have this condition when you want to start a new relationship and have to inform a new partner.

Good luck with your treatment!

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Re: Hi Im from Australia :)

Post  noni on Tue Feb 15, 2011 12:10 am

...just wondering what is PT like for vulvodynia?
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Re: Hi Im from Australia :)

Post  Stompy on Tue Feb 15, 2011 12:31 am

Sorry, I don't understand what you mean - what is PT?

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Re: Hi Im from Australia :)

Post  Mouse on Tue Feb 15, 2011 9:34 am

Hi Stompy - love your name!

PT is physical therapy ie physio for those of us at the bottom of the world.

I had mine today - ouch!

Vicki

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Re: Hi Im from Australia :)

Post  Stompy on Tue Feb 15, 2011 11:34 am

Thanks for clarifying "PT" Vicki. I've never heard it called that in Australia... maybe it's an NZ thing?

Noni - I've only had one session so far and it was... intimate! The physiotherapist applied direct pressure to my pelvic floor muscle with her fingers, which she said had muscle knots in it (just like you get in a tense back muscle, etc.)... and I'm sure you can guess how she reached that particular muscle to do so.

The first part of my physio appointment was spent discussing diet, exercise, bladder and bowel function (the usual stuff that physiotherapists are obsessed with), then the examination and aforementioned muscle-relaxation therapy.

I have also done biofeedback previously with the Australian psychologist mentioned previously in this thread. But I believe that physiotherapists typically do this too. It involves using a vaginal electrode (sensor) hooked up to a little electronic device that lights up as you relax/contract the pelvic floor muscles. The aim is to teach you how to relax the pelvic floor muscle. (The machine is also used for people with incontinence or prolapse who need to learn how to strengthen and contract their pelvic floor muscle).

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Re: Hi Im from Australia :)

Post  Sarah001 on Tue Feb 15, 2011 12:21 pm

Don't know about the rest of the UK girls but I'm feeling very jealous we don't have a brilliant clinic like that here in the UK! Wouldn't it be great if we did.
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Re: Hi Im from Australia :)

Post  Louise on Tue Feb 15, 2011 12:31 pm

Hi girls, welcome stompy, I'm from Perth all this talk makes me feel like jumping on a plane and coming over! flights are only $200 return at the moment haha although my treatment is going alright for now fingers crossed for a happy outcome x x

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Re: Hi Im from Australia :)

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