Hi, I've never been diagnosed with this and only just heard about it today after googling some of my symptoms but was wondering if anyone could listen to them to tell me if it sounds like PNE is something I might have.. Sorry if this board isn't the place to ask this, I'm just desperate.
- almost a week ago I noticed redness and soreness around my labia- no sores/bumps/blisters
- lots of pain on my mons pubis with no visible signs of irritation
- random "prickly" tingling pain around the top parts of my labia and the sides and the area around my clit and the outside parts of my labia
- brief but painful sharp stabbing sensations on the inside and outside parts of my labia & mons pubis
- bleeding after going to the bathroom (anal fissures I think, & itching)
I already went to see the doctor and she looked at everything, including inside of my cervix/uterus and everything and said that while she saw the redness I was talking about, she didn't see anything else wrong. She swabbed me and said she'd test me for a yeast infection but the test came back negative (not surprised because I've had those before and they don't feel anything like this). She asked me to come in again for STD testing so I'm going to but I forgot to tell her that I've already been tested for everything and haven't had sex since then, (except for herpes, but I figured that a doctor would be able to tell right away if I had that or not, and I also asked her if it looked like it and she said not at all). I think she's going to check for STDs because I told her I had a lot of discharge recently but now I think it was unrelated and only because I just finished my period. I'm in my early twenties, does this condition affect women in my age group?
Very scared and have questions about PNE..
Re: Very scared and have questions about PNE..
Hello New90,
Welcome to the forum. Yes, PNE can occur at your age but I think you need more evaluation before you settle on that as a diagnosis. It's possible to have irritated pudendal nerves without having an entrapment. If your physician rules out other diseases and can't figure this out, you may want to ask for a referral to a pelvic floor physicial therapist for an evaluation, particularly one who is trained to treat people with pudendal neuralgia. Did you see the PT list on the left-hand menu of the homepage?
Are you having any difficulty with sitting?
You have lots of options and lots of reason for optimism. If it is PNE you have found some answers early on and many people do very well with treatment.
Take care,
Violet
Welcome to the forum. Yes, PNE can occur at your age but I think you need more evaluation before you settle on that as a diagnosis. It's possible to have irritated pudendal nerves without having an entrapment. If your physician rules out other diseases and can't figure this out, you may want to ask for a referral to a pelvic floor physicial therapist for an evaluation, particularly one who is trained to treat people with pudendal neuralgia. Did you see the PT list on the left-hand menu of the homepage?
Are you having any difficulty with sitting?
You have lots of options and lots of reason for optimism. If it is PNE you have found some answers early on and many people do very well with treatment.
Take care,
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: Very scared and have questions about PNE..
Thanks so much for the reply. I notice the pricks of pain more when I'm sitting than when standing (still some pain when lying down) but it's not impossible or unbearable to do so. It's also worse at night I think than in the morning. What are some of the causes? I don't do any weight lifting or running. This is an embarrassing question so you can just ignore it if you want but can you irritate the nerves by masturbating? Whenever I masturbate I pull up and stretch the area around the top of my vagina and hold it there.. I'm probably just over thinking everything but I'll bring up PNE when I see the doctor again. I really hope this is just temporary nerve damage or something rather than something like a permanent STD. Thanks again for answering.
Re: Very scared and have questions about PNE..
Hello New90.
I think it is much too soon for you to worry about PNE given that your symptoms began such a short time ago. I had something very similar to what you have described when I was about your age and it went away after a couple of weeks. There are many things that can cause irritation, like soaps, laundry detergent and such, so I would look for a more benign cause of your symptoms. Try not to panic. Your problems may well clear up on their own. I hope they do.
Greeneyes
I think it is much too soon for you to worry about PNE given that your symptoms began such a short time ago. I had something very similar to what you have described when I was about your age and it went away after a couple of weeks. There are many things that can cause irritation, like soaps, laundry detergent and such, so I would look for a more benign cause of your symptoms. Try not to panic. Your problems may well clear up on their own. I hope they do.
Greeneyes
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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Very scared and have questions about PNE..
Hi new90,
Everything you and your doctor are doing right now is exactly right, you need to rule out other easier to identify causes for your problem.
The stabbing and prickling sensations you have noted could be due to a nerve irritation but the rest of your symptoms are not very typical of a pudendal nerve issue so other tests obviously need to be carried out.
I agree it is early days yet and maybe a change in soap and detergents may help, it is definitely worth a try isn't it. You could maybe try aloe vera topically (put it in the fridge first)
Let us know how you get on. Hopefully things calm down quickly but if you are holding any tension in your pelvic floor, physiotherapy session(s) as Violet said may be another step if things don't settle.
Take care,
Helen
Everything you and your doctor are doing right now is exactly right, you need to rule out other easier to identify causes for your problem.
The stabbing and prickling sensations you have noted could be due to a nerve irritation but the rest of your symptoms are not very typical of a pudendal nerve issue so other tests obviously need to be carried out.
I agree it is early days yet and maybe a change in soap and detergents may help, it is definitely worth a try isn't it. You could maybe try aloe vera topically (put it in the fridge first)
Let us know how you get on. Hopefully things calm down quickly but if you are holding any tension in your pelvic floor, physiotherapy session(s) as Violet said may be another step if things don't settle.
Take care,
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Re: Very scared and have questions about PNE..
Hi new90
If you look up the vulva pain society online there is advice on selfcare in the lefthand column - under 'general advice' there are some good ideas.
Things like washing the area just with water, wearing cotton pants and avoiding tight clothing help.
Just to answer your masturbation question - and this is just my opinion - but i think masturbation or rubbing anywhere down below can cause nerve irritation but given your age may only be temporary.
Rosemary x
If you look up the vulva pain society online there is advice on selfcare in the lefthand column - under 'general advice' there are some good ideas.
Things like washing the area just with water, wearing cotton pants and avoiding tight clothing help.
Just to answer your masturbation question - and this is just my opinion - but i think masturbation or rubbing anywhere down below can cause nerve irritation but given your age may only be temporary.
Rosemary x
Re: Very scared and have questions about PNE..
Yes, good thought, change your washing powder and fabric conditioner as well. Also whatever you use for bathing or showering, change to something different, see if that helps. I'm assuming you're not using any creams or lotions or wipes, nothing like that? - if you are, then they are possible suspects too.
Skin reactions can come out of the blue, even if you've been using a particular product for a long time and had no problems up til now. Also, manufacturers do alter the formulations of their products without necessarily making it clear that they've done this. In tender places, a reaction can be really painful.
To make yourself more comfortable - when you clean the area, use plain warm water and cotton wool. Avoid using soap or any sort of washing gel or any sort of wipes. And if you've been using a washcloth, that's another suspect. Blot or dab dry with a clean soft towel, no rubbing or wiping.
With regard to masturbation it is indeed possible that you may have made the area a bit sore, it is all so sensitive in that area that even sore skin can cause lots of pain and get the nerves jumping. And if you have been using a vibrator or anything like that - there's another possible culprit. I'd suggest that it would be sensible to stay away from such things until all this is dealt with.
Please make sure that you do tell your doctor about the bleeding when you have a bowel motion, this should not be ignored. She needs all the information you can give her so that she can make the right diagnosis.
I do hope that you start to feel more comfortable soon.
Skin reactions can come out of the blue, even if you've been using a particular product for a long time and had no problems up til now. Also, manufacturers do alter the formulations of their products without necessarily making it clear that they've done this. In tender places, a reaction can be really painful.
To make yourself more comfortable - when you clean the area, use plain warm water and cotton wool. Avoid using soap or any sort of washing gel or any sort of wipes. And if you've been using a washcloth, that's another suspect. Blot or dab dry with a clean soft towel, no rubbing or wiping.
With regard to masturbation it is indeed possible that you may have made the area a bit sore, it is all so sensitive in that area that even sore skin can cause lots of pain and get the nerves jumping. And if you have been using a vibrator or anything like that - there's another possible culprit. I'd suggest that it would be sensible to stay away from such things until all this is dealt with.
Please make sure that you do tell your doctor about the bleeding when you have a bowel motion, this should not be ignored. She needs all the information you can give her so that she can make the right diagnosis.
I do hope that you start to feel more comfortable soon.
Re: Very scared and have questions about PNE..
Wow thank you all so much for the advice. I went to the doctor and she agreed that it was probably just an irritation- I've been washing it a lot with soap in the shower so she said that was likely to have caused it. Every once in a while I'll feel a sharp pinprick or something, but I think my symptoms are gradually going away so I'm very happy about that. Thanks so much again ladies you were all so helpful!
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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Very scared and have questions about PNE..
That's good news new90. I hope this all settles completely soon. It can all be such a puzzle but you seem to have things sorted out. Hope so anyway 
Take care,
Helen
Take care,
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Re: Very scared and have questions about PNE..
Just in case it would return a herpes test is advisable. I have been going through similiarities but more chronic and severe symptoms and thought possible std. After testing so far this is not the case, but in my very extensive research I have found herpes visually digiagnosed wrong 60% of the time and doesn't show fully on test results for up to four months after infection. Something to check if symptoms return, but very glad you are feeling better!