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» Vulvadynia
Yesterday at 11:53 pm by Linda Williams

» Will I ever be able to wear jeans?
Wed Jul 19, 2017 11:02 pm by jungleclover

» Looking for a friend IRL; LA/OC
Wed Jul 19, 2017 10:58 pm by jungleclover

» Constant pain, I want to die.
Wed Jul 19, 2017 10:55 pm by jungleclover

» What is Vulvodynia?
Wed Jul 19, 2017 10:42 pm by jungleclover

» Anyone else get this from yeast infections? (new member)
Wed Jul 19, 2017 10:37 pm by jungleclover

» Owner of vulvodyniSuppoet.com
Wed Jul 19, 2017 10:28 pm by LaurenVV

» anyone from southern california in here?
Tue Jul 18, 2017 2:38 am by crypticcalico

» Surgery Success - Still early days, but going well so far!
Sun Jul 16, 2017 8:42 pm by sarahjane1332343

Vulvadynia

Fri Jul 21, 2017 11:53 pm by Linda Williams

I am 68 years old and a year ago was diagnosed with vestibulitis, then vulvadynia. I have a history of chinchilla bladder infections, have had major bladder repair, hysterectomy, mid 30's, an auto immune disease. I take a daily antibiotic to keep UTI's at bay. My doctor has done the Quip test which was uncomfortable but did not test anything. I use Premarin vaginal cream 2 times a week. These …

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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.

Comments: 1

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: 20

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 …

Comments: 0

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!!!

Comments: 6

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 …

Comments: 2

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 …

Comments: 1

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 …

Comments: 12

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 …

Comments: 3


Cured of Vulvodynia

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Cured of Vulvodynia

Post  angelique2016 on Wed Aug 17, 2016 1:39 am

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as it has the same ingredients, but the ointment protects the skin more when you wee, rather the cream wont stay on as long, but if used just before bed it will mean you will sleep and not have to pee) used sparingly every night only before going to bed, and not to wash to much off in the shower in the morning. (Must not use ointment in the morning, as it will cause more pain due to friction) I did this for about 3 months, took the Nortriptyline at night before bed and used the ointment at night before bed. This worked, why, because the Nortriptyline, is for pain if taken in low level doses (highly levels are for depression), and makes the brain stop thinking about the pain, as it has now become persistent pain, and the ointment, soothes the skin and it has properties in it to help heal the skin. I have been cured for many years now. Anyway I stopped posting on here as I was getting abused by people that were not able to get a hold of the medications in other parts of the world. So if anyone is interested in this information, and if you can get these medications, then it will cure you, you will need to do your pelvic floor exercises after you are cured to help strengthen the muscles again, but I hope that this information can help some people out there, as I know how extremely excruciating this problem is, it bought me to tears, and no sleep and could hardly sit, wanted to go to the hospital so many times, I nearly went crazy with the pain, and of course no intercourse what so ever, could barely even wee without pain, had to wear loose clothes, not tight jeans what so ever. I tired everything, so many creams, ointments, lotions, you name it, nothing worked. It was originally caused by a harsh medicated body wash. Just use sorbolene or something like that on your body, and dont wash with harsh soaps or body washes. Just mostly water is fine, and dont sit in hot baths. Tried to have intercourse, which made it worse as the skin was so delicate now, it just made the skin split with masses of microscopic splits, which was diagnosed by the oncologist/gyno who examined me with a high tech microscope thingy! LOL So it took longer to heal. The skin doesn't heal down there because it is moist all the time and because of the urine and the friction of movement and rubbing from clothing, this is why the ointment works, and only used at night when you are resting, not moving around. This is why vulvodynia just keeps going on and on and on forever with no relief.

So I wish everyone all the best, please dont write back nasty things to me, simply because the medication might not be available in your country, perhaps look for medication that are of a similar nature that will help you, or go onto ebay and buy the cream. It takes time to heal, 3-6 months but you will get there, just be patient. I feel for everyone that posts on here as I know how painful this problem is, and I know how desperate the situation gets, and how it affects every aspect of your life, This worked well for me, and it might not work for everyone, but at least give it a go!

angelique2016

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Re: Cured of Vulvodynia

Post  lindsey_taylor on Sun Aug 21, 2016 8:02 pm

It is so awful that people were writing nasty things to you! I, for one, am thankful to know that someone has been rid of this awful problem and I am very grateful to have read your story. Thank you for sharing with us! Smile It helps us with ideas of treatment options.

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Re: Cured of Vulvodynia

Post  Sarah001 on Sun Aug 21, 2016 8:24 pm

I recall way back when you used to post and mentioned Advantan Fatty Ointment, it was purely the name of the ointment that reminded me!! I don't remember anyone being nasty about it but I do remember looking for it myself in the UK and not being able to buy it here, I've just had another look and still can't find any here, however... it seems to really just be a hydrocortisone ointment as opposed to a cream and if anyone in the UK is interested in trying an ointment version Boots do one called Derma Care and it's only about £3.60 a tube, I use it if I'm using steroid ointments for anything and it's good. I can't comment on V being cured by it because it depends on the cause of the problem but if anyone in the UK fancies ointment as opposed to cream pop to Boots.

Angelique2016 very pleased to hear you're still doing well. Very Happy
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Re: Cured of Vulvodynia

Post  Ldc on Mon Aug 22, 2016 4:15 pm

Angelique2016, I would like to ask you what were your simptoms like. It makes me feel hopeful and happy reading this kind of successful stories, but before giving if a try I would like to be sure if your Problem was similar to mine. Anyway, glad to hear you are still doing great. I would consider this treatments in a while if mine doesn't work (my doctor is trying other approaches right now).

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Re: Cured of Vulvodynia

Post  sgw11 on Tue Aug 23, 2016 10:36 am

Hey,

I'm just curious, I'm from Melbourne too and also see a female dermatologist. I'm about 95% cured too after having botox injections and peudendal nerve blocks. I'm currently on amitriptyline orally and in cream form too, but I'm decreasing the meds. What was her name? I see Dr Tanja Bohl. Would highly recommend her Smile

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95% cured

Post  CarolRD on Thu Sep 08, 2016 10:41 pm

Did u have vulva pain, did you have a biopsy? Did the cream help?

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Re: Cured of Vulvodynia

Post  Suzie on Wed Sep 21, 2016 3:33 am

Hi does anyone experience yeast infection symptoms with Vulvonydia, mainly a week or so after your cycle?? Please share any remedies, supplements or products that you use..
Thank you

Suzie

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Re: Cured of Vulvodynia

Post  tinkerbelle2 on Fri Dec 09, 2016 3:09 pm

Sarah001 wrote:I recall way back when you used to post and mentioned Advantan Fatty Ointment, it was purely the name of the ointment that reminded me!!  I don't remember anyone being nasty about it but I do remember looking for it myself in the UK and not being able to buy it here, I've just had another look and still can't find any here, however... it seems to really just be a hydrocortisone ointment as opposed to a cream and if anyone in the UK is interested in trying an ointment version Boots do one called Derma Care and it's only about £3.60 a tube, I use it if I'm using steroid ointments for anything and it's good.   I can't comment on V being cured by it because it depends on the cause of the problem but if anyone in the UK fancies ointment as opposed to cream pop to Boots.

Angelique2016 very pleased to hear you're still doing well. Very Happy


Sarah, you're back! You were gone for so long. I hope you are doing OK! X
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Re: Cured of Vulvodynia

Post  Sarah001 on Fri Dec 09, 2016 9:58 pm

Hey Tinkerbelle Very Happy nice to see some familiar faces here even if it's not for the best of reasons.
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Cured 90% with Eumuaide first aide ointment

Post  Silvergirl on Sat Mar 18, 2017 4:15 am

Ladies. I'm going on my 10th using this ointment 3x a day. It's so nice not to continuously think about the pain. It's still there but better every day. Well worth the $48. First few days I did get relief but it's better each stay. Stick with it.

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Re: Cured of Vulvodynia

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