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» Anyone been to see Dr.Claire Bailey in Birmingham?
Tue Aug 15, 2017 6:36 pm by Kezz

» Recently Diagnosed.... Help!
Tue Aug 15, 2017 2:57 pm by amyhp

» Vestibulectomy
Sun Aug 13, 2017 9:54 am by infinitelywondering

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Sun Aug 13, 2017 4:27 am by Hopeitworks

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Sun Aug 13, 2017 2:20 am by Hopeitworks

» Partial Vestibulectomy
Sun Aug 13, 2017 1:38 am by infinitelywondering

» Anyone being treated by Drexel University???
Sat Aug 12, 2017 8:50 pm by Hopeitworks

» Post Vestibulectomy Pain !!!
Sat Aug 12, 2017 8:00 pm by sj17

» Pain management - what works for me
Sat Aug 12, 2017 9:58 am by sj17

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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New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

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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 …

Comments: 22

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 1

New to the site and just had a vestibulectomy

Fri Aug 04, 2017 12:19 am by Hopeitworks

Hello Everyone,

I have been suffering from vulvodynia for years! So I decided to go ahead and have vestibulectomy on July 28, 2017. I really wished I would of found this site before I went through with the surgery. Maybe I would have been more prepared to deal with recovering. I just need someone to talk and I dont mind hearing your story.

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Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 0

can anyone recommend a good dermatologist in LA?

Thu Jul 27, 2017 4:17 pm by saffron

Hi, I am wondering if anyone knows a vulvar dermatologist in Los Angeles? My problems seem to be external, but I'm having trouble finding a knowledgable doctor. My current dermatologist is pretty cosmetic based and I'm afraid all the products he prescribed actually made my situation so much worse!

I know there a few drs in Orange County/San Diego, but was hoping to stay local as even …

Comments: 3

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 …

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Anyone tried Biofeedback treament?

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Anyone tried Biofeedback treament?

Post  Sebby (Admin) on Sun Dec 20, 2009 8:05 pm

I would like to know if anyone has tried Biofeedback treatment?

Bascially there is a theory that the pelvic floor muscles have a role to play in the maintenance of vulval pain. The muscles around soft tissue injuries often tense up in order to protect the soft tissue while it is healing from either injury or infection. If the muscles stay "unstable" as Dr Glazer puts it, it does not allow the tissue to heal i.e. from rescriting blood flow to the area etc. I find it hard to explain please see the extract off Vulvodynia.com

Dr. Glazer discovered that the muscles of the pelvic floor in vulvodynia patients were abnormal. This abnormality can be measured by highly sophisticated muscle measurement technology known as surface electromyography. Once the patients’ exact abnormality is known it can corrected by an individualized program of muscle rehabilitation and continued monitoring to assure that the correct changes occur in the muscle. Correcting the muscle abnormalities leads to pain relief. Overall, women undergoing this treatment report an average reduction in pain of 80%. In addition, research reports that 50% of patients become completely pain free by the end of the treatment

In the uk NHS I cannot find any Biofeedback treatments for Vulval pain, so I am thinking of buying the home kit from Dr Glazer's website.

So Anyone tried Biofeedback either the homekit or with a practioner? Did it work?

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Biofeedback

Post  tweety on Sun Mar 14, 2010 10:40 am

Hi,

I have done some biofeedback work. My specialist did record my progress and said that my muscles had become very strong. This means i had good control of tightening and releasing the muscle. I think this work has definitely helped me with my dilator exercises too.

Has it worked? Well, i still have this condition but I do think that it has its benefits in treating the condition.

Not sure if that helps

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thanks

Post  Sebby (Admin) on Mon Mar 22, 2010 8:19 pm

Thanks for replying, I'm still thinking about trying it. Just need to try one treatment at a time so I can keep progress of what works. Not sure I will be able to find a good bio feedback practitioner who uses the glazer protocol in uk.
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Re: Anyone tried Biofeedback treament?

Post  Sarah001 on Sat Jun 12, 2010 12:04 pm

You can buy home biofeedback machines, the cheapest one I've seen is £75 and the more expensive ones about £200. Any womens health physio should actually cover this angle though and there are plenty of those about. One of the things biofeedback machines will do that normal pelvic floor exercises won't is tell you what your resting tone is of the pelvic floor. However as far as I can tell the protocol is the same and usually a slightly higher than normal resting tone is weak muscles in spasm so strengthening exercises are still the recommendation.

You can buy a pelvic floor toner called the "pelvic floor educator" which has a cone that goes inside and a piece of plastic that stays outside and when you use the right muscles the plastic lets you know by lifting up. These are available on Amazon and don't cost much either.
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Re: Anyone tried Biofeedback treament?

Post  Sebby (Admin) on Wed Jun 16, 2010 8:08 pm

Thank you so much Sarah, I will look at that Pelvic Floor Educator, Have you tried it?
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Re: Anyone tried Biofeedback treament?

Post  Sarah001 on Thu Jun 17, 2010 10:58 am

Bot yet but I am seriously considering buying one, it's very cheap compared to buying the machines and I can see how it would be extremely helpful to be able to see the piece of plastic.
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Re: Anyone tried Biofeedback treament?

Post  Sarah001 on Sun Jun 20, 2010 11:37 am

Sebby can I ask where online you've found Dr Glazer's home kit please? I've tried searching for it but can't seem to find it and I'm interested in having a look at it. Thanks in advance.
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Re: Anyone tried Biofeedback treament?

Post  Sarah001 on Thu Jul 22, 2010 2:15 pm

I don't know about everyone else but I can't seem to find out what Dr Glazer does differently to other people for his biofeedback method. I read a case study on his site from a lady who had recovered using it but she just said it was a case of contracting and relaxing the muscles several times a day for various lengths of time which sounds just like bog standard kegels to me! I know the biofeedback probe isn't normally used in kegels but the method sounds no different to ordinary pelvic floor exercises apart from that factor. I'm really confused about what he does that's different because the information isn't readily available, anyone know how his method differs from kegels apart from using the probe? Question
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Re: Anyone tried Biofeedback treament?

Post  Sebby (Admin) on Sat Jul 24, 2010 5:43 pm


I dont know about his exact method, I just looked up the home kit on his website...

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

http://www.vulvodynia.com/bio_vvpn.htm

Here is the link and also a manuscript of a lecture he gave


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Re: Anyone tried Biofeedback treament?

Post  Sarah001 on Sat Jul 24, 2010 7:11 pm

Hmm... thanks for those links Sebby. It doesn't really explain if the home kit comes with full instructions of the actual exercises though does it? It only really says there's a CD of Dr Glazer talking about vulvovaginal issues and a video conference on how to set the equipment up. Not much use for us laywomen if it doesn't explain exactly what we need to do with it! I've emailed Dr Glazer to ask if there are instructions because if there aren't it's not worth spending so much money on it. I've also asked if it can be delivered to the UK just in case it sounds perfect then turns out we're in the wrong country (as per) to receive it. Rolling Eyes

I'm dubious about it too because the book he wrote doesn't explain his method at all except to say it's biofeedback and you'd think he would want women to try his method to see just how effective it is. He seems to regularly state normal kegels aren't the same as his method and don't work for vulvodynia but doesn't explain how the two methods differ and as most of us here are from the UK we're not likely to find anyone trained in the method. Crying or Very sad
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Re: Anyone tried Biofeedback treament?

Post  Sarah001 on Mon Jul 26, 2010 6:18 pm

Dr Glazer got back to me today and basically said you don't need a therapist to use the home kit but it doesn't come with instructions on how to establish exactly what you need to do. Basically the video conference with Dr Glazer is how you learn what exercises to do. If a therapist is interested in learning his method he has teaching packages but he finds most are not willing to invest the time and money (bet the one I see won't be! Rolling Eyes ) but if any of you girls find one who is then direct them to his site.

It can be delivered to the UK but of course you will only know what to do with it if you have the video conference. I'm not very technical and I'm sort of wondering how on earth I'd set up the computer for a video conference? I assume it would involve a webcam or something like that??
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Re: Anyone tried Biofeedback treament?

Post  Sebby (Admin) on Mon Jul 26, 2010 9:34 pm


Yes a webcam is a must and a good broadband internet connection. I think he does it over skpe as far as I am aware? so this will need to be downloaded

I dont have a webcam but mums laptop has a built in one so I would use hers.

To be honest I am probably going to order the pakage anyway if the pain or vulvual clinic cant find a decent physical therapist in my area

Im fed up with waiting and I really do fink the Vulvodynia has something to do with my pelvic floor as I have had Vaginismis since I was young. (Basically tightening of the vaginal muscles which makes penetration hurt)

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Re: Anyone tried Biofeedback treament?

Post  Sarah001 on Tue Jul 27, 2010 12:26 pm

I'm sure mine must be related to my unstable pelvis, I'd be very surprised if it turned out to be something else so I'm pretty sure mine is a weak pelvic floor in spasm. I really want the home kit but I'm going to have to sort out a webcam and skype first so I won't be able to afford it for a while. I look forward to hearing all about your video conference and progress once you get it though! With your other problem it definitely sounds like you're a candidate for biofeedback.
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Re: Anyone tried Biofeedback treament?

Post  Sebby (Admin) on Tue Jul 27, 2010 9:14 pm


Thanks Sarah, Im going to the pain clinic next Monday so one of my priorities is to ask for Physical Therapy.

I will keep you all updated

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Re: Anyone tried Biofeedback treament?

Post  Sarah001 on Thu Jul 29, 2010 12:35 pm

Well I've booked in to see the only Women's Health Physio in our county and I see her early next month. Unfortunately I will be on my period for the first session (isn't that always the way?!) but as it will be mostly history taking I have more than enough physio history to fill the appointment so I'm going anyway! I've also just bought a Pelvic Floor Educator, which I mentioned previously, to make sure I'm hitting the right muscles while I practice at home. I picked one up on ebay (new of course) for £12 including delivery which is alot cheaper than anywhere else, they're about £30 everywhere else now! Hopefully that will arrive in the next few days so I can check my form. I doubt this physio uses biofeedback but I know a friend of a friend went to see her with similar problems so she has treated vulvodynia patients before. I'll keep you all posted.
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Re: Anyone tried Biofeedback treament?

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