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» New here would very much appreciate advice at the end of my rope
Fri Jan 11, 2019 1:46 am by Jma990o

» Diagnosed Recently
Tue Jan 08, 2019 3:55 pm by flissyg

» Looking for suggestions or encouragement
Thu Jan 03, 2019 11:09 am by Gaby

» Clinical Trial for Vulvodynia Treatment
Wed Dec 19, 2018 7:13 pm by wramirez

» New and need advice and help
Thu Dec 13, 2018 9:48 am by Derry59

» Things that have worked for me
Tue Dec 11, 2018 11:32 am by Amethyst

» Found relief after more than 15 years of pain!
Tue Dec 11, 2018 11:17 am by Amethyst

» I'm new to this forum and would love some advice! :)
Tue Dec 11, 2018 3:06 am by Cin124

» I think I know what causes vulvodynia-it's the memory of pain
Sat Dec 08, 2018 1:24 pm by foxysugarpants

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 2

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 0

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 6

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 4

I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 13

Hello. Happy to have found this group.

Fri Dec 07, 2018 9:01 pm by foxysugarpants

I am new here and hope to gain some insight into my vulva pain. I suffered for a long time not realizing that there are ways to feel better. I saw the Dr. yesterday and I am starting P/T pelvic and valium suppositories. queen

Comments: 0

Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

Comments: 3

Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 4


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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