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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 …

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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 …

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New member

Sat Mar 18, 2017 7:37 pm by Lisa1627

Hi ladies. I am new to the forum. I have had what I think is vulvodynia caused from hsv 2. So not only do I have the burning vag but the constant feeling of being contagious. I can honestly say that I hate my life and myself right now. There are days when I think I would rather be dead. I tried the amitryptline and it helped but if it's only making my brain think I don't have pain then it's …

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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 …

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Recovered from Vulvodynia

Thu May 04, 2017 9:42 pm by chancesunny

Hey everyone,

Im a new member on this forum and wanted to share my story so I can help anyone who is feeling helpless. Maybe what worked for me can work for you. I'll try to make this short so you can go get better!

I had vulvodynia for about 3-4 years. In the beginning, it started with pain that I thought was just a yeast infection and then I thought it was a urinary tract infection or …

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New here, my story and looking for advice

Wed Apr 26, 2017 9:02 am by rachiecakes

Hi All!

I was really hoping to get some feedback from everyone here - it's very hard dealing with an issue like this because no one really understands what I'm going through!

Im 28 years old I've had interstitial cystitis for 3 years - but never an vaginal issues. About 6 months ago I got a yeast infection following a course of antibiotics - similarly I developed IC after a bad UTI. The itching …

Comments: 4

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 2

Male visitor

Wed Jan 18, 2017 11:19 pm by outsider

Hello!

I am a 25 year old guy who has erectile dysfunction following an injury a few years ago. I am here because I think that men and women with sexual dysfunction could benefit from dating each other. My experience has been that women have lost interest when they found out that penetrative sex was not possible with me.
So I am interested in learning more about female sexual disorders. Do young …

Comments: 3

New Here: Question/My Story

Mon Apr 03, 2017 2:00 am by overit14

Hi everyone. I came across this site by Googling "vulvar pain support". I feel like my case is different than most I read about so I was wondering if anyone else here experiences this in the way that I do.

This started in 2012 and has happened off and on since. I get really, really red and it's very painful, swollen and burns. Sometimes it may be a little itchy, but mostly it just …

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Pudendal Nerve

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Pudendal Nerve

Post  Sarah001 on Sat Apr 16, 2011 12:14 pm

I was browsing the internet last night and came across some articles about the pudendal nerve and a couple of things in the symptom list made me think of myself and others on here, one of the associated pain areas with the pudendal nerve is the feet. I know I'm not the only one with foot pain as well as V and it surprised me because I've mentioned my burning feet to various doctors and they never react to it. The other symptom that really jumped out at me was any kind of arousal causing pain, I know someone else mentioned that and I have that problem too which is why all types of sex are impossible. The other thing that really had me wondering was the surgery involves freeing (sometimes cutting which leads to SI problems) the sacrotuberous and sacrospinous ligaments which are both badly affected with pelvic instability and SI joint dysfunction which would apply to me and others on here. In fact the sacrotuberous ligament is a continuation of the hamstrings so even tight hamstrings could cause pudendal nerve entrapment between the two ligaments. The sacrospinous ligament is closely related to sacral position and the piriformis so any problems there could set the nerve off too. It really interested me and I'll try and find the article I was reading, I've got a bit of a habit of clearing my history, so I'll search for it again and post the link if I find it.

For anyone wondering, the first course of action with pudendal nerve problems is medication and physiotherapy aimed at the pelvic floor and pelvis so it doesn't change the treatment plan initially but if those things are given a good chance to work and don't it probably gives us a good reason to ask for a nerve block while physio is continued.
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Re: Pudendal Nerve

Post  Mouse on Sun Apr 17, 2011 9:15 am

Hi Sarah,

I had the arousal symptoms when my V kicked off. Marcel Waldinger believes the dorsal nerve of the clitoris which branches off the pudendal nerve is the culprit. Check the links. There are people having some success with nerve blocks. Especially one who had a similar journey to mine ie from arousal to constant pain.

http://www.restlessgenitalsyndrome.com/en/causes.html
http://www.restlessgenitalsyndrome.com/en/articles.html

He also links two conditions together - restless genital and restless leg syndrome.

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Re: Pudendal Nerve

Post  Sarah001 on Sun Apr 17, 2011 12:24 pm

No I don't have persistent or regular arousal going on, I have pain with arousal if it happens (not often) so it's not a case of "Restless Genital Syndrome" it's a case of when I used to attempt sex with my then partner getting aroused would cause pain. I'm pretty sure someone else mentioned the same situation on here but can't recall who. It's more the link to the feet that interests me, as alot of you know my feet burn exactly the same way my vulva does and while one doctor said it's probably nerves nobody has mentioned the pudendal nerve specifically. I've spent some time reading through posts on pudendal nerve sites and loads of the patients mention their feet also burn so it can't be a coincidence. I'm pretty sure my therapist mentioned being able to stimulate the pudendal nerve with the biofeedback machine so I'll ask her about it when I restart physio, anyone else had a physio mention being able to do this?

It is mentioned in Amy Stein's book as one of the issues treated by relaxing the pelvic floor and balancing the muscles around the pelvis so it shouldn't change the treatment plan. Funnily enough kegels make the pain worse and when I did the Glazer Protocol it made my symptoms alot worse and of course that involved alot of kegels so I'm thinking maybe my ligaments that are struggling with my SI joints are irritating the pudendal nerve.
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Re: Pudendal Nerve

Post  Mouse on Sun Apr 17, 2011 7:53 pm

Pain with arousal is probably the dorsal clitoril nerve as well.

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Re: Pudendal nerve

Post  ADHESIONSTOO on Fri Apr 22, 2011 2:38 am

Yes, I feel the burn at the same time in my feet as well. And while I haven't been aroused for quite some time, back when I was I always paid the price with increased pain for days afterwards and this was with no intercourse.

I am having no luck with the so-called 'home' remedies for the burning that a gyno recently recommended- all-cotton, no soap, sitz baths, etc. I'm on week 3. The only possible difference I might have is that I'm just drier but still have the almost constant burning- it always escalates when I go to work. And I'm in the middle of menopause so not sure if trying to keep dry is a good thing and I have no uterus so have felt pretty dry since my hysterectomy anyway.

I went to a massage therapist this week- I used to go to her regularly before my job changed last year. She did say my hamstrings were tight. She also said my left tailbone was somehow 'off' which might explain why my left leg and foot have been hurting even more lately and the left side of the vagina/vulva has been more irritated than the right side. She said someone should look at it. My doctor has no opening until the week after next. Will tell her about this- hopefully she will investigate but who knows. Otherwise I'll have to see someone else- maybe a chiropractor if she doesn't cooperate. I definitely feel that the pain/burning issue is not limited to just the vagina/vulvar area but don't think a lot of doctors believe or know about this.

I also have a very small rectocele and sometimes it feels like it bulges into the vagina even more at times and adds to the burning/irritation but since it is so small the doctors don't consider it a problem.

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Re: Pudendal Nerve

Post  Sarah001 on Fri Apr 22, 2011 1:07 pm

It's funny how many women mention burning feet once it's brought up, I have the exact same sensation in my feet as I do the vulvar and weirdly if I massage my feet it helps both. You sound to me like you have a pelvic alignment problem, that would explain the tight hamstrings (they tighten up to try and stabilise it) and the coccyx being a bit off (sacral torsion) and one side feeling different to the other is usual too as the asymmetry is what sets the problem off. I know I keep banging on about pelvic alignment but it's such a big link to vulvar pain I wish everyone would have it checked out. Anyway, a physio would be able to check the alignment of your pelvis and realign it if necessary then give you exercises to stabilise it so the hamstrings can let go. Personally I've found doctors don't understand it at all and that includes orthopedic consultants, neurologists and general family doctors of all ages and sexes so I'd skip them and go straight to physio if it was me (if I had I'd probably not be struggling now but I wasted alot of time seeing doctors). Another key muscle with the pudendal nerve is the obturator internus which is one of the external hip rotators, if you look it up you'll see where it is, the fascia of this muscle is directly attached to the pelvic floor and the pudendal nerve goes through that so tightness there is going to be a problem too. There's a common trigger point in the OI on the medial side of the sit bones so if you feel your sit bones then press on the inside of them you may be able to find that too. Any problem with the pelvis is very likely to set the pelvic floor off too which as we all know is a common feature of V. Let us know what a physio thinks when you've been.
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Re: Pudendal Nerve

Post  Sarah001 on Fri Apr 22, 2011 1:09 pm

Forgot to say if your legs are the same length and your pelvis looks level aske to be checked for "inflare and outflare" as they cause sacral torsion. Good luck!
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Re: Pudendal Nerve

Post  Aussie on Thu Apr 28, 2011 6:47 am

Sarah,

Please please post the article on the pudental nerve. I knew there had to be an explanation for the feet burning, I want to take the article, should you find it, to my gp who will support me in everything, he just cant find time to research me as he has a lot of patients.

If the muscles of the pelvic floor are tense of corse the pudental nerve will be irritated. I was, however under the impression PNE was very rare?

doesn't explain the burning in my hands or head though?

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Re: Pudendal Nerve

Post  Mouse on Thu Apr 28, 2011 8:42 am

I think Pudendal nerve entrapment is different again. The pudendal nerve has a lot to answer for.

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Re: Pudendal Nerve

Post  Sarah001 on Wed May 04, 2011 5:55 pm

I've had a quick look for the article but haven't found it as yet, I'm a bit short of time at the moment so can't trawl through page after page of results on Google which is how I found it in the first place. If anyone wants to have a look I probably searched for "pudendal nerve burning feet" at a guess and the fact I can't find it quickly means it could be pages in. My laptop is set up to delete each browsing session once I turn it off as my ex sometimes uses it and I don't like him noseying through what I've done. If I get more time I'll have another look.
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