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» What's next?
Yesterday at 4:01 pm by jennyk2

» Pain management - what works for me
Yesterday at 3:41 pm by Jo44

» Share your Vulvodynia Story and become a member of the Global Anthology!
Mon Apr 23, 2018 10:44 pm by smyerskelley

» If it helps anyone else
Mon Apr 23, 2018 6:36 pm by VH7797

» Cured, cyst in foot
Mon Apr 23, 2018 4:06 pm by Guest

» HELP!! Topical cream?
Sun Apr 22, 2018 5:44 pm by emalita

» The pain CAN get better - What's worked for me
Sun Apr 22, 2018 5:32 pm by emalita

» Custom made leggings?
Sun Apr 22, 2018 4:52 am by CatJones

» Please tell me this can get better
Sun Apr 15, 2018 11:31 am by amf329

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 4

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 3

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14

Lidocaine with condoms?

Wed Mar 21, 2018 10:44 pm by AEM1

Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

Comments: 1

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: 23

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

Comments: 0

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 …

Comments: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3


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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