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» What's next?
Tue Apr 24, 2018 4:01 pm by jennyk2

» Pain management - what works for me
Tue Apr 24, 2018 3:41 pm by Jo44

» Share your Vulvodynia Story and become a member of the Global Anthology!
Mon Apr 23, 2018 10:44 pm by smyerskelley

» If it helps anyone else
Mon Apr 23, 2018 6:36 pm by VH7797

» Cured, cyst in foot
Mon Apr 23, 2018 4:06 pm by Guest

» HELP!! Topical cream?
Sun Apr 22, 2018 5:44 pm by emalita

» The pain CAN get better - What's worked for me
Sun Apr 22, 2018 5:32 pm by emalita

» Custom made leggings?
Sun Apr 22, 2018 4:52 am by CatJones

» Please tell me this can get better
Sun Apr 15, 2018 11:31 am by amf329

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 4

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 3

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

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 …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14

Lidocaine with condoms?

Wed Mar 21, 2018 10:44 pm by AEM1

Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

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: 23

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

Comments: 0

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

Comments: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3


Pasha electrode

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Pasha electrode

Post  Husband on Mon Jul 04, 2011 10:51 am


Did anyone know something about this treatment outside of Germany? I think Vulvodynia pain could be comparable to this kind of neuropathic pain.

http://www.wi-muenchen.de/content/aktuelles/aktuelles.php?id=32

Husband

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Re: Pasha electrode

Post  jules on Tue Jul 05, 2011 3:10 pm

I live in the US. i read your post. i have never heard of this treatment. however, i am having something similar implanted into my spine this summer. it's called a neurotransmitter (aka spinal cord stimulator). the docs will implant to wires (leads) in my spine w/ a battery connected to it. I will have a remote control to control the vibrations to the nerves. the vibrations are supposed to interrupt the pain message to the brain. i will have a one week trial (surgery, but battery will be on outside). if the surgery is successful then i will have the wires and the battery permanently placed under my skin. the treatment you found sounds similar.

jules

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Re: Pasha electrode

Post  Husband on Tue Jul 05, 2011 3:40 pm

Hi Jules,
yes I think this is the same basic. My wife is having the same type of problems like you. After the Botox did not work, she only took Ami but it did not work during the last months too. Actually she is trying Lyrica and Cymbalta but this seems to be a really bad flare up.
The difference to the permanent therapy you are going to get is that the nerves will be finally destroyed. This sounds good, but not if other functions will be harmed too. However, we did not contact this clinic so fare. But please keep me informed about your experiences.

Husband

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Re: Pasha electrode

Post  Aussie on Thu Jul 07, 2011 2:56 am

Sounds like a possibility as for some this all started with infection. The idea that the infection stays within the nervous system is interesting.

Jules please post when you get this treatment. Thanks x

Aussie

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Re: Pasha electrode

Post  Husband on Thu Jul 07, 2011 6:23 am

I am not a doctor, but I think Herpes zoster virus infection as reason for this neuralgic pain disease (and what they treat with this method up to now) can be easily identified and is not a part of Vulvodynia related pain. However the result, strong pain signals due to a structural change of nerves are obviously similar. They claim a 70% pain reduction by this method but I think they never have done this for Vulvodynia patients. I have to leave this decision to my wife, but I think we will get in contact with this clinic and I will keep you informed.

Husband

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Re: Pasha electrode

Post  jules on Fri Jul 15, 2011 4:18 am

husband,

question: If your wife proceeds with this treatment, would her nerves be permanently destroyed? My surgery will not destroy the nerves. However, in the past, I had four different nerve blocks. Two were in the Pudendal Nerve. I was told that if the blocks took away the pain, the docs would be able to perform a surgery that involves the cutting (laser) of the Pudendal nerves. I am not a candidate for that surgery because it wouldn't help me. I had no relief from the nerve blocks.

I will keep you all updated on my Nuerotransmitter surgery. I am waiting to hear from the clinic. My health insurance needs to authorize it first. Smile

jules

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Re: Pasha electrode

Post  Husband on Fri Jul 15, 2011 9:50 am

They try to stimulate the nerves in order to define the right ones. After this there will be a permanent destroying.

My wife changed the medication. At the moment with Ami and Lyrica, she is o.k.. However the electrode is still an option.

Good luck for your surgery.

Husband

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Re: Pasha electrode

Post  jules on Tue Jul 19, 2011 11:29 pm

I'm on Lyrica too. i am going to be increasing it from 100-300 over time. i'm on two other meds as well,. i have never tried Ami. my surgery will probably be in mid August. fingers crossed. say hello and good luck to your wife.

jules

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Re: Pasha electrode

Post  Husband on Thu Aug 25, 2011 11:43 am

Hi Jules,

have you done it and how is the result?
Best regards

Husband

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Re: Pasha electrode

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