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» Acupuncture advice please
Today at 2:25 am by ryn207

» New and need some help
Today at 12:49 am by Sad

» Please tell me this can get better
Mon Feb 19, 2018 2:10 am by anon99

» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

New and need some help

Wed Feb 21, 2018 4:30 pm by LindafromNJ

New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some …

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MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

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NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

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Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

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Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



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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 …

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Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

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So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

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 …

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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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Re: Pudendal Nerve

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