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lightmail
Posts: 98
Joined: Mon Sep 12, 2011 6:19 am

newbe here.

Post by lightmail »

Hi everyone ...I can't sit long on regular chair but seem to do better on my recliner set all the way back. Do any of you sit that way? Or will this cause me possible problems. Thank you ...Robert
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birdlife
Posts: 172
Joined: Mon Oct 11, 2010 1:56 am
Location: London, UK.

Re: newbe here.

Post by birdlife »


Welcome to the forum, Robert. Some of us on on here can't sit on a chair without a particular type of cushion (coccyx, donut, wedge, etc) and some sadly can't sit at all. I'm like you, better off not sitting upright, and also better with some kind of support at the foot end, to help ease pressure off the tailbone and perineum. If you have your recliner set all the way back you have the best of both worlds don't you. I'm assuming you have no sacral pain, as that would definitely start burning if you laid on your back. If the way you sit or recline doesn't cause you pain or burning symptoms, then you can't be doing any further damage to the nerve. Have you been clinically diagnosed with PN or PNE yet, and do you know whereabouts your nerve irritation or entrapment is.
PN, possible entrapment at ischial spine -Dr.Natasha Curran, National Hospital for Neurology, London.
2 -Xray guided double nerve blocks -Dr.Baranowski - no relief.
TP self-massage reduced piriformis pressure on p nerve.
Dr.Greenslade/Bristol:
CT guided block (left) 16.7.12- success! Could sit without a cushion! On a brick wall!
06/2/13 - Sit pain gradually returned, L3. Offered further CT-guided block, or an op. Had to decline at time.
Feb '15. Applying to be referred again to Dr G.
lightmail
Posts: 98
Joined: Mon Sep 12, 2011 6:19 am

Re: newbe here.

Post by lightmail »

thank you birdlife...I have a feeing of object in rectum. I don't even have a rectum, it was removed 20 years ago. I had a turp surgery done for enlarged prostrate 3 months go. I think that when the dr. cauterised the blood vessels a he may have damaged the pudendal by heat through the shell of the prostrate. Of course he denies, says no where close. I can sit for just short while before pain develops. I can't walk for long without feeling a bunch of turds are going to fall out. (sorry) I always feel that i have to have a bowel movement. Not really painful but very miserable .Don't seem to have any other symtoms ,besides surgery related. Went to doctor suggested on this site and he said that in no way did I have pn or pne. Very adament about it. He is a pain specialist and seems to know his stuff. Very confident. He seems to think the operation has caused some of this and it should resolve. He deals with this nerve quite often . Other drs. refer their patients to him. Maybe I need to give it more time. But it has me very worried...Robert
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Violet M
Posts: 6651
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
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Re: newbe here.

Post by Violet M »

Hi Robert,

Welcome to the forum. What did the PN doctor recommend as a course of treatment for you? If your physician approves it maybe you could try some physical therapy from one of the PT's listed on the site.

Violet M
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.
lightmail
Posts: 98
Joined: Mon Sep 12, 2011 6:19 am

Re: newbe here.

Post by lightmail »

Hi Violet.... He said to wait for a few months to let surgery effects wear off because he believes my problem is related. I do have an appointment monday with p.t. recommended from this site..Thank you...Robert
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Violet M
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Joined: Mon Sep 06, 2010 6:04 am
Location: United States
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Re: newbe here.

Post by Violet M »

Good luck Robert. Let us know how it goes for you with the PT. ;)
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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birdlife
Posts: 172
Joined: Mon Oct 11, 2010 1:56 am
Location: London, UK.

Re: newbe here.

Post by birdlife »

One thing to remember is nerve endings are slow to heal post surgery Robert, 3 months isn't long. Hugs to you for your present misery but hang on in there. If your specialist says emphatically you don't have PN/E, and he's conversant with the pudendal nerve, then that should be one thing you don't have to worry about. Certainly hope so and hope this resolves for you quickly.
Take care,
PN, possible entrapment at ischial spine -Dr.Natasha Curran, National Hospital for Neurology, London.
2 -Xray guided double nerve blocks -Dr.Baranowski - no relief.
TP self-massage reduced piriformis pressure on p nerve.
Dr.Greenslade/Bristol:
CT guided block (left) 16.7.12- success! Could sit without a cushion! On a brick wall!
06/2/13 - Sit pain gradually returned, L3. Offered further CT-guided block, or an op. Had to decline at time.
Feb '15. Applying to be referred again to Dr G.
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helenlegs 11
Posts: 1779
Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: newbe here.

Post by helenlegs 11 »

Good luck with the PT lightmail,
I do hope that you get some success with it. You are in a similar situation to Calluna in that she had PN symptoms straight after surgery and was told that her new nerve symptoms would settle, well they would wouldn't they :) . It's now a waiting game I can't quite remember how long after the surgery she gave up waiting for the nerve to heal, well over a year I think. Calluna??
I agree that there is still time for things to be put right, especially if as the surgeon says he was no where near the nerve.
It may be a muscular thing (which can happen post surgery of course) irritating the nerve. PT may be a good solution for you.
Welcome to Hope :)
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.
calluna
Posts: 1058
Joined: Mon Sep 27, 2010 11:57 pm

Re: newbe here.

Post by calluna »

Hi lightmail - and welcome to HOPE from me as well - yes Helen is quite right, your situation is indeed similar to mine, back in 2009. I had numbness in the left pudendal distribution, after two- three weeks the numbness went and sensation came back as pain, together with tenesmus - continually feeling that I had to have a BM - and the foreign body feeling. My gynae was most reluctant to talk about it, he kept saying that it would heal, it would settle down and to give it time.

I was referred to the pain clinic 3 months after the surgery. They also said wait, and that nerves could take up to 2 years to heal. It was January of this year that I got fed up with the whole issue, meds and their side effects etc, and asked my GP to please refer me to see a PN specialist - so that was more than 18 months since the original damage. And I've just had surgery, it took 5 months from when I saw Dr Greenslade. I gather that if I'd had it done sooner, there would have been less scar tissue and adhesions formed, and correcting things would have been easier. I was a bit cross to hear that actually, but not a lot of point getting wound up about it, I've let it go - everyone was giving their best opinion at the time, after all. I really should have seen a PN specialist earlier.

Hindsight is wonderful, isn't it!

You however - unlike me! - have done the right thing by going to a PN specialist promptly. I'm sure you can rely on his advice - I do hope that things improve for you soon.

One thought though - after I had the surgery back in 2009, the one that started it all, it was explained to me by a colo-rectal specialist that the feeling of continually needing to have a BM - tenesmus - that very probably this was simply because my insides were now somewhat rearranged, and that the bowel now had things leaning up against it which hadn't been there for quite a while. And that it was very possible that my body was just misinterpreting this sensation, and that my new 'normal' had to be relearnt by the various pressure sensors and muscle systems in that area - and that once the new 'normal' was properly established, the feeling of tenesmus would go.

And it did.
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