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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 …

Comments: 0

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


The possibility that for SOME women vulvodynia is a Mindbody syndrome

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The possibility that for SOME women vulvodynia is a Mindbody syndrome

Post  mary jane on Tue Jun 20, 2017 9:22 pm

I am posting this here from another forum, it;s a true story of a user called "ozagnes".
I think that it's possible to have severe stress and anxiety and long term repressed emotions turn into psychosomatic illnesses or central sensitization even.
My pain had no apparent reason apart from a cyst which shouldn't have caused such pain. I also discovered recently that if I am really angry or stressed I get breakthrough nerve pain. I control this using mindfulness. I got the idea from another user called Mouse on this forum.

so here goes:

"Hi all,

I have just been reading all the posts about pelvic pain, and although there are a few women that had (and hopefuly treated?) vulvodynia, I could not find much in 2011.

I am new on this forum, I have been suffering from undiagnosed mild vestibulitis since I had my first intercourse, and 3 years ago it got far worse after a yeast infection (and a lot of stress with my phd, let's face it...). Then it's been 3 years of medical nightmare, I have been on 3 continents, seen the best gynesurgeons and pain specialists, was told I had vestibulitis, vulvodynia, pudendal neuralgia, even IC (which wasn't true since I don't have frequency, but surely the hydro-distention done under general anesthetic said yes). I have tried all the treatments including botox injections (the most painful thing I've had done in my life!), countless needles, and even 2 surgeries.
I've also had back pain as a kid (they said it was my scoliosis...yeah right), anorexia, neck pain, psoriasis, leg itching and my body is full of trigger points, particularly in the shoulders, back, gluts and you guessed it, in the pelvis!

I finally found out about TMS about 2 months ago, have read schubiner and Sarno, and I know now that my "infection pain" was in fact stress, and all the rest that followed was pure nocebo. Incredible when I think about it, as soon as I was told I had vulvodynia, I thought "Oh my god, some women can't even sit because of shooting pain! at least I am not that bad!!!" and bingo, 2 weeks later I was that bad...

I am having progress and regress...some days when I "feel" that I am not sick, it is like enlightment, and of course my pain is much lower, and it feels so light on my shoulders...and then a few days later my old mood is back, the pain increases, and my worries come back. Arrrgggg!
I AM GETTING SO ANGRY AT MYSELF! I know my mind is doing that to me. Until now I think I was scared of "upsetting" my unconscious. I am such a nice goodist person I could not even "hurt" my mind! And today I finally bursted and shouted at myself.
But it is hard to know what to do and what to think, I think I have to reassure the child and shout at the parent.

Anyhow, it would be great to hear from other women, or men that have suffered from pelvic pain (because I am sure that prostatitis, IC, pudendal neuralgia, vulvodynia, piriformis syndrome, pelvic floor disfunction is just the same thing).

Thanks
Smile

agnes"


and


"Hi all,

It has been a while since i have been on this forum because i gave birth!!! A beautiful and healthy baby boy Smile
I had a c-section because i did not want to add the stress and fear of a natural birth since i have pudendal neuralgia/VVS, although i know that natural birth really should not improve or worsen my condition even if that is exactly what ob/gyn are saying...

Now, for those suffering fron chronic pelvic pain, here are some interesting facts about my pregnancy that really make no sense if one was to beleive the medical theories of nerve entrapment/inflammation:
- while putting on 13kgs and therefore clearly adding pressure on my pelvis, particularly sitting, the pain did not get worse! If my nerve was entrapped, how could it not be worse?
- my hormone levels clearly have been up and down, but not my pain, so again, it is not a problem of oestrogen (an ob/gyn had told me that pregnancy often improved the pain momentarily because oestrogen levels rise)
- pregnancy hormones help losen ligaments and muscles, but my pain did not improve during pregnancy, so if my pelvic muscles are tight and sore, it is not just physiological.
My take on this: my pain is caused by tight muscles and blood restriction due to psychological tension that even the most drastic physical changes will not affect.

Oh, and surprise surprise, the pain is barely noticeable since i gave birth, which i think is due to my mind being busy with my new bub rather than focussing on my own emotional pain...although i still have big issues with my mother!
And just the fact of saying "i have improved" brings on the fear that it will all get bad again...damn conditioning and fear!!!

So i hope this will give some reassurance to others on this forum that have been "diagnosed" with pudendal neuralgia or other forms of chronic pelvic pain.

Cheers! "


Please take the time to read what she said here. in her last post ever she said she still has some pain but overall she also had long periods of remission and that things were under control for her.

Source: http://www.tmshelp.com/forum/topic.asp?TOPIC_ID=7017
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mary jane

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