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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, …

Comments: 7

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


Treatment ideas for daily provoked pain

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Treatment ideas for daily provoked pain

Post  TMN1994 on Sat Jan 07, 2017 2:02 pm

Hi everyone,
I have had vulvodynia for three and a half years and have other types of peripheral neuropathy, which developed 6 months ago. My neurologist believes that we will never find a black-and-white cause, and that it is best to proceed just addressing and allievating the symptoms. Since last June (when my nervous system completely imploded), my vuvlodynia has been horrendous. Walking and moving around are really painful, so (despite all of the other types of peripheral neuropathy) vulvodynia is my main concern at the moment.

I am seeing a pain consultant who specialises in gynaecological pain. I have seen so many doctors over my lifetime that I have decided I want to go in to appointments with a few solid ideas of treatments instead of solely relying on the doctor to provide ideas. So I was wondering if anyone has any treatments they would recommend for someone with severe daily pain, that is largely provoked by touch or friction? I want to push for injections- I can't keep applying numbing cream every 2 hours for the rest of my life! Would it be possible to get some ideas? I want to compile a list so that I can discuss the pros and cons of each with her. I would be really grateful for any suggestions.

I have never spoken to anyone with vulvodynia before, so really want to hear from people with the same condition, as I feel so isolated at the moment.
Thank you!
Antonia

TMN1994

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Re: Treatment ideas for daily provoked pain

Post  PainBlogger on Sat Jan 07, 2017 2:39 pm

Have you tried any oral medications - such as amitriptyline, nortriptyline, gabapentin, pregabalin, or duloxetine?

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Re: Treatment ideas for daily provoked pain

Post  TMN1994 on Sat Jan 07, 2017 3:26 pm

Hi Painblogger,
I have- I am on amitriptyline 80mg and pregablin 200mg (twice a day). As my problem is global neuropathy I am searching for a medication that will work systemically. However my vulvodynia is so bad that I also want a regional treatment.
Do you have any thoughts? I will use the list of meds that you gave and ask my doctor about each as well so thank you!

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Re: Treatment ideas for daily provoked pain

Post  PainBlogger on Sat Jan 07, 2017 4:46 pm

I also have widespread neuropathic pain (back, neck, hips, shoulders) from fibromyalgia and I've been through all those meds I listed. I'm now on duloxetine 90mg/day and it's the most effective of all I've tried for both the vulvodynia and other body pain. My vulval pain is really minimal now and I'm pain free much of the time. I also take a low dose of tramadol but while that helps my other pain it's never helped with the vulvodynia/bladder pain.

Here's a summary of my vulval pain history: http://vulvodyniasupport.forumotion.net/t2291-four-months-of-significant-improvement

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Re: Treatment ideas for daily provoked pain

Post  TMN1994 on Sat Jan 07, 2017 10:51 pm

Thank you for your reply! I have read over the main post and I am going to make notes and take they along to my next appointment.

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