So confused….

[PainNoPain]

Years of pain…years of being told I have PN. I find a specialist who went in, stuck his fingers inside me who has worked with France team, pushed on my PN nerve on both sides….no pain…I don’t have it….im I so happy? He tells me I have a tight pelvic floor..But what is this pain I was told by other professionals that always told me I have it?? I’ve spent thousands
So I go and see a pelvic floor specialist 20 years experience, they tell me no strengthing exercise and only stretch?? I done a week and I feel 10 times worse?? She follows a book which apparently is known world wide…I can’t even sit , my sit bones are on fire and feel so hard on hard surfaces…I’m so tired of all of this?? I was happy with the pain I had and now I’m worse off? Do I stretch or do I strengthen …is it normal to feel worse?? I can’t even sit for 30 seconds…everything is on fire!
Please someone help me

[Violet M]

All of that would be very confusing. Do you know which French team the person who did your exam worked with?

According to the Nantes Criteria for pudendal nerve entrapment, tenderness when they press on the pudendal nerve is NOT one of the essential criteria for PNE. It is only one of the complementary criteria - in other words you may have tenderness on examination with PNE, but you might not. https://www.pudendalhope.info/wp-conten ... iteria.pdf
So, if it's possible to have pudendal nerve entrapment without tenderness on examination, I think it would also be possible to not have tenderness if you just have pudendal neuralgia without an entrapment. I don't know if you have either one, but I'm not sure I agree with the person who did your examination, based on what that article says.

Secondly, in my own personal experience, stretching made my symptoms much worse, and so did internal myofascial pelvic floor release. It irritated the nerve so much I had a week of more severe pain. So, I thought about it logically -- that normally myofascial release of a tense muscle makes you feel better. So I decided I must have more than just a tense muscle. I also thought that logically, if a nerve is entrapped between ligaments or in muscle fascia or scar tissue, then stretching would make the nerve feel worse. Anyway, I quit PT because it didn't make sense logically to continue something that was making me worse. It turned out to be a good decision because I had a nerve entrapment and PT would have just damaged the nerve more.

I went back and read your previous posts. I don't know for sure what all of your symptoms are. I don't see that you've had a recent MRI to rule out obvious things like a spinal radiculopathy. I also don't know whether you've had pudendal nerve blocks or what your response to them was. I don't know many people who have gotten permanently better from pudendal nerve blocks, but they can be a valuable tool in determining a diagnosis. Anyway, I wish you luck in figuring out a diagnosis. It can be very challenging.

Violet

[PainNoPain]

Thank you Violet.

It’s a pain specialist here in the UK. I will get an MRI scan on hips and lower back. I had two cortisone injections on my sitbones cause they were on fire. I managed to get the pain under control and was told to do these stretches and now my perinium is on fire….i am really struggling to sit. I’ve had pain before but no this bad…I did some strengthening exercise like leg lifts etc…but nothing longer than a week…which is scary….i have a son and my wife is pregnant…I didn’t need this….i just want to end my life it’s so bad….i will try nerve blocks to see if that will make it better…

Did you do any exercises to make the pain better??

[capricorn91]

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Hello,

I do stretching exercises every day and i find that it really helps with my tight pelvic floor muscles (I'm female by the way) and i was told by two physio therapists that i should be stretching for up to twenty minutes, but it made my pain a million times worse.

so now i only hold the stretches for 5 seconds at a time, sometimes 15 seconds for each stretch. I have to do this every morning because my muscles get extremely tight if i don't do them, and i find that stretching for a shorter time actually helps, without causing a painful flare up of symptoms.

I also can't sit down at all, sitting makes my symptoms much worse.

I absolutely cannot do any strengthening exercises because it made my muscles chronically tight for about four weeks and made the nerve pain worse. In your case i think you should stop doing the exercises if it's making you worse.

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[PainNoPain]

I’m a male…they told me to stretch twice a day!
Can you let me know what stretches you do?
I was told to stretch the groin , pirfomus , hips etc…..
But the pain just went wild. I was doing 5 breaths for each one….i will try again only for 5 seconds…but will rest now for a while….my main symptom is literally burning sensations in the perineum! It feels like there’s some kind of object in there…it’s horrible…I hope it will pass …I’m used to the pain, I just need it to calm down a bit…

[Violet M]

i have a son and my wife is pregnant…I didn’t need this….i just want to end my life it’s so bad….i will try nerve blocks to see if that will make it better…

Did you do any exercises to make the pain better??

I'm sorry -- it sounds like you are really struggling. There was a time my perineum was on fire, and I wanted my life to end too, so I understand the pain. It must be really difficult with a child and another one on the way. But you still have treatment options so please stay strong for your family and pursue the treatment options available to you. Are you taking any medications to help calm down the pain a bit? This pain management provider you went to...they must know of some medications that would help?

There were no exercises that made the pain better for me. Exercise is what got me into trouble in the first place and exercises just made it worse.

Violet

[capricorn91]

I’m a male…they told me to stretch twice a day!
Can you let me know what stretches you do?
I was told to stretch the groin , pirfomus , hips etc…..
But the pain just went wild. I was doing 5 breaths for each one….i will try again only for 5 seconds…but will rest now for a while….my main symptom is literally burning sensations in the perineum! It feels like there’s some kind of object in there…it’s horrible…I hope it will pass …I’m used to the pain, I just need it to calm down a bit…

...

Hello, i also agree with Violet that there will be other treatment options and medications available for you to try.

The strengthening exercises caused my symptoms to be in a painful flare up which lasted for four weeks, but flare ups are usually a temporary worsening of symptoms, so i'm sure your symptoms will decrease again if you just try the stretching for a shorter amount of time, and not do too much all at once.

Yes, i also have the burning sensations and really severe pudendal nerve pain, i feel that my nerve pain is mostly in the dorsal/terminal branch of the pudendal nerve, although i haven't been officially diagnosed yet, this pain is so severe that i never realised that i also have perineum pain very badly as well, (also constant bladder pain/urgency).

It's hard to explain the stretches that i do, so maybe i will try to post a link to a YouTube video where physio therapists demonstrate the stretches.

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[capricorn91]

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The links below are to the videos of the stretching exercises, hopefully you can view them:

https://www.youtube.com/watch?v=bj9-bBf-5f8

https://www.youtube.com/watch?v=ftJbW0EskY4

https://www.youtube.com/watch?v=lHi-sk7ic8Y

https://www.youtube.com/watch?v=PaYylUGoQTk

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Also walking helps my nerve pain so much, and i feel that the stretching helps even more if i do the stretches after walking.


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[PainNoPain]

Thank you.

I’ve booked another appointment to go and see him. To test me again for PN and to have some nerve blocks to stop the pain. I will ask for some medication as well as I can’t live like this…nerve pain just eats you inside….its horrible

I have 4 months to reduce the pain as the new baby will be here. I just want to be that fit father who can enjoy his kids and not be scared to exercise with them and have fun without worrying for days if you’ve over done it you’re in pain for the next week….its a killer

[Violet M]

You might want to read this page and the articles linked to at the top of the page for more information on nerve blocks.
https://www.pudendalhope.info/category/ ... ve-blocks/

It's good to be well-informed before any procedure, so ask your doctor lots of questions too.

Violet