I'm so lost and confused, do I have Pudendal Neuralgia?

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Re: I'm so lost and confused, do I have Pudendal Neuralgia?

Postby Violet M » Fri Dec 15, 2017 5:59 am

I don't know, did she say whether your pelvic floor muscles are tight? I would proceed cautiously with the exercises if you feel like it is tightening your pelvic floor more and question her about it next time you go.

It's a good sign that you felt better instead of worse immediately afterward. I have no idea what sloppy pushups and happy baby poses are. I will have to look those up. I think basically the goal is to get the pelvic floor more relaxed so hopefully these exercises will help with that.

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.
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Re: I'm so lost and confused, do I have Pudendal Neuralgia?

Postby KennyG » Fri Dec 15, 2017 4:48 pm

Ya her suspicion is that i have an over tightened pelvic floor and i cant control it?

Shes ordering supplies to try biofeedback

She also mentioned some weird tool that u can put up your but to loosen pelvix muscles, i dunno about that
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Re: I'm so lost and confused, do I have Pudendal Neuralgia?

Postby Violet M » Mon Dec 18, 2017 6:17 am

Probably it's a wand similar to what Dr. Wise recommends. Personally I didn't have much luck with biofeedback. It was basically like trying to tell yourself to relax when you were in really bad pain and since I had pudendal nerve entrapment I don't think it would have helped over time either. It's probably worth a try anyway -- especially if it helps you learn paradoxical relaxation.

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.
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Re: I'm so lost and confused, do I have Pudendal Neuralgia?

Postby KennyG » Thu Dec 21, 2017 9:59 pm

Violet M wrote:Probably it's a wand similar to what Dr. Wise recommends. Personally I didn't have much luck with biofeedback. It was basically like trying to tell yourself to relax when you were in really bad pain and since I had pudendal nerve entrapment I don't think it would have helped over time either. It's probably worth a try anyway -- especially if it helps you learn paradoxical relaxation.

Violet


Thanks for all the info you have provided, I feel like ive bombarded you with questions.

How can you tell the difference between entrapment and neuralgia? I feel like some doctors/physiotherapists use the term interchangeably.

I've had my first appointment with an osteopath, he told me he deals with similar symptoms in women post child birth sometimes, I'm hoping this goes somewhere.

I've also found a doctor in ottawa that does "shock therapy" on nevres among other things but pretty pricy.

Here's a question, when this all started months ago and ppl told me it was fissure related, I had to avoid coffee and spicy food, since at this point its clear its not fissure, should i still avoid certain foods?

I've had several times where things almost start to calm down just the tiniest amoung, like from 10/10 pain to 6/10 pain, then something as simple as bending over triggers it and then im back to 10/10 for multiple days.

so infuriating
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Re: I'm so lost and confused, do I have Pudendal Neuralgia?

Postby Violet M » Fri Dec 22, 2017 5:53 am

You can go to the following link on our website for an explanation of the difference between PN and PNE. http://www.pudendalhope.info/node/8#2

Also you may want to read the Nantes criteria article that describes what they consider to be the criteria for determining if you have a nerve entrapment (PNE). http://www.pudendalhope.info/sites/defa ... iteria.pdf

Personally what I ate made no difference in symptoms.

One theory for increased pain with certain activities like bending over is that if the nerve is entrapped between ligaments it can't glide easily and bending over stretches it. Not sure if that describes your case though.

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.
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Re: I'm so lost and confused, do I have Pudendal Neuralgia?

Postby KennyG » Tue Jan 09, 2018 6:22 pm

So I've been taking Gabapentin for approximately 5 weeks now, maybe some minor relief but no major improvement

I start Physio also 5 weeks ago, since then I had some improvements, where i was able to sit for maybe 20 min but then set backs, over and over

I started to lose faith in my physiotherapist because 3rd week of physio she was obsessed with treating my upper back, saying that since i slouch for working on computers it must be tugged on my nerves in the spine and thus tugging on pudendal nerve. I am sceptical of this prognosis and when shes charing $90 for 15 minutes of time, i have to question whether upper back exercises is actually helping. Does upper back exercises actually help pudendal nerve issues? i wouldnt think so but i could be wrong.

I switched physiotherapists and this new one seems to at bare minimum have a much better attention to detail. She did a full examine including rectal which lead to everything flaring up alot. This was 3 days ago and it still hasnt calmed down, but she did say she could feel swelling inside around the area the pudendal nerve passes through. ALSO she explained to me the nerves shouldnt hurt, like ever, that nerves run all over your body and they dont hurt under normal circumstances, so if her just touching the area the nerve passes through hurts, then that would imply the nerve is agravated. I basiclly knew this already but appreciated atleast this physio therapist seem to understand the condition.

I also saw a urologist who i was referred too, he revied my MRI and said he saw nothing on it. when i told him about pudendal neuralgia, he said he didnt know what that was, and that he knows of the nerve but i shouldnt look online for help and just listen to him, he then told me i have "chronic pelvic pain syndrome", i walked out of his office baffled how he dismissed everything i had to say.

I'm also seeing an osteopath who believes these conditions are similar to those a pregnant women would suffer with, were doing some work on the nerves but so far havent seen major improvement although i will say i have less tingling overall, the pain remains between 10/10 - 8/10.

Overall very discouraging with minor glimmers of something.

Mentally this is taking a toll where i feel im a burden on my wife and my family.

I cant make an income in my condition which could destroy everything i worked years and years to build.

very frustating times,

I only hope things improve with all these methods were taking on
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Re: I'm so lost and confused, do I have Pudendal Neuralgia?

Postby Violet M » Wed Jan 10, 2018 6:42 am

Hi Kenny,

To me the fact that your rectal exam and the PT pressing on the nerves caused you to have a major flare-up is significant. That is what happened to me and instinctively I knew that the nerve was already irritated. I decided that internal pelvic floor PT was not going to help since it just caused a flare-up and would just irritate the nerve more. Based on my experience, I'm not sure you want to spend anymore money on PT unless you feel like it is going to help you.

Chronic pelvic pain syndrome as a diagnosis seems like a totally useless diagnosis to me. It tells you nothing about what is causing the chronic pelvic pain. In fact, you probably knew before you went into the appointment that you had chronic pelvic pain. So what good is that diagnosis to you? You really need to find the underlying cause of the pain so you can fix it right? I agree with you that your new PT seems to understand the condition -- better than the urologist.

The fact that your pain is triggered by certain activities tells you that something is irritating your nerve when you get into certain positions. For me, it was hardened sclerosed ligaments irritating the nerve. I don't know what it is for you. Is there any way you could get to a pudendal neuralgia physician?

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.
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Re: I'm so lost and confused, do I have Pudendal Neuralgia?

Postby KennyG » Sat Jan 13, 2018 8:09 pm

Violet M wrote:Hi Kenny,

Chronic pelvic pain syndrome as a diagnosis seems like a totally useless diagnosis to me. It tells you nothing about what is causing the chronic pelvic pain. In fact, you probably knew before you went into the appointment that you had chronic pelvic pain. So what good is that diagnosis to you? You really need to find the underlying cause of the pain so you can fix it right? I agree with you that your new PT seems to understand the condition -- better than the urologist.

Violet


Yes this is exactly how i felt, like what a useless diagnosis, I was well aware i had cronic pelvic pain, yeeeesh

I don't know of any "Pudendal" doctors in Canada, Toronto.

There is a single doctor in the Toronto region named "Dr. Allan Gordon" however his office appears to be a 1 year wait just to get a date to see him, that seems insane to me, also he only does injections to the nerve, nothing else.

Its terrifying that my doctor at this point just says "go do physio" and that is the end of him exhausting his options.

Is there any truth to just "exercise through it" and it can improve via just exercising despite pain?

ALSO my pain still has only very slowly calmed down from that examine which was 7 days ago now

ALSO ALSO I've been having alot of buttock pain recently in the left buttock and strangely i get some odd pain in my pinky toe?, coincidence or not? this is the same side i have all of my anus pain (only on the left side)

I'm very lost and confused on what my next steps are.
Last edited by KennyG on Sat Jan 13, 2018 11:23 pm, edited 1 time in total.
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Re: I'm so lost and confused, do I have Pudendal Neuralgia?

Postby April » Sat Jan 13, 2018 9:39 pm

Hi KennyG,

I don't think that "exercise through it" makes sense if your problem is in the pudendal nerve. In fact, for some of us exercise was the source of the problem. Exercise is good for our bodies, but I think it makes sense to avoid exercises that you think create a flare. I try to do exercises in which I'm lying down (swimming and arm weights on my back), because I don't notice an uptick in my pain afterwards.

April
Last edited by April on Sun Jan 14, 2018 7:41 pm, edited 1 time in total.
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Re: I'm so lost and confused, do I have Pudendal Neuralgia?

Postby Violet M » Sun Jan 14, 2018 5:58 am

Exercise is what caused PN/PNE for me so I don't recommend exercising through it if there is any chance you have a nerve entrapment. It could just make you worse.

I developed strange sensations in my right foot when I had PNE -- because the piriformis mucle was in spasm and pressing on the sciatic nerve. I don't know if your foot symptoms have anything to do with your pelvic pain but for me it did.

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.
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