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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

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Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

Comments: 5

Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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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 …

Comments: 4

Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

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: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

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 …

Comments: 10

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 …

Comments: 1

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 …

Comments: 6


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.

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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

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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.

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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

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Re: Pasha electrode

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