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» Vestibulectomy
Fri Aug 18, 2017 12:39 pm by Hopeitworks

» Anyone been to see Dr.Claire Bailey in Birmingham?
Tue Aug 15, 2017 6:36 pm by Kezz

» Recently Diagnosed.... Help!
Tue Aug 15, 2017 2:57 pm by amyhp

» Discomfort from my own liquids
Sun Aug 13, 2017 4:27 am by Hopeitworks

» Anyone else have burning on the front of thighs?
Sun Aug 13, 2017 2:20 am by Hopeitworks

» Partial Vestibulectomy
Sun Aug 13, 2017 1:38 am by infinitelywondering

» Anyone being treated by Drexel University???
Sat Aug 12, 2017 8:50 pm by Hopeitworks

» Post Vestibulectomy Pain !!!
Sat Aug 12, 2017 8:00 pm by sj17

» Pain management - what works for me
Sat Aug 12, 2017 9:58 am by sj17

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 …

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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: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

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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 …

Comments: 22

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 1

New to the site and just had a vestibulectomy

Fri Aug 04, 2017 12:19 am by Hopeitworks

Hello Everyone,

I have been suffering from vulvodynia for years! So I decided to go ahead and have vestibulectomy on July 28, 2017. I really wished I would of found this site before I went through with the surgery. Maybe I would have been more prepared to deal with recovering. I just need someone to talk and I dont mind hearing your story.

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Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 0

can anyone recommend a good dermatologist in LA?

Thu Jul 27, 2017 4:17 pm by saffron

Hi, I am wondering if anyone knows a vulvar dermatologist in Los Angeles? My problems seem to be external, but I'm having trouble finding a knowledgable doctor. My current dermatologist is pretty cosmetic based and I'm afraid all the products he prescribed actually made my situation so much worse!

I know there a few drs in Orange County/San Diego, but was hoping to stay local as even …

Comments: 3

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: 0


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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Re: Pudendal Nerve

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