New member
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Charlie123
- Posts: 22
- Joined: Sun Feb 05, 2012 9:31 am
New member
Hello, i am writing on this forum for any advice, enlightenment and support !
Last edited by Charlie123 on Sat Jun 02, 2012 9:31 am, edited 1 time in total.
Re: New member
Welcome Charlie,
Sorry you have followed some of our roads to here but glad you made it for help. The nerve blocks are diagnostic and you will want to get guided so they can actually hit the right spot. Ruling out other stuff is important as you have done and getting on gabapentin so you can lower pain. A PN PT would be a good step to see what they can do and tell you about what is going on and Dr as you are lining up. Please stop doing anything that causes you pain and try to get a cushion. See the faqs pages for steps as I said and other advice. Best of luck to you and I like the idea of education I gave info to all my doctors about this to start educating them. That is an added trouble future folks do not need, going around to find a doctor or anyone in the medical profession that has a clue or just heard of it. Take Care
Janet
Sorry you have followed some of our roads to here but glad you made it for help. The nerve blocks are diagnostic and you will want to get guided so they can actually hit the right spot. Ruling out other stuff is important as you have done and getting on gabapentin so you can lower pain. A PN PT would be a good step to see what they can do and tell you about what is going on and Dr as you are lining up. Please stop doing anything that causes you pain and try to get a cushion. See the faqs pages for steps as I said and other advice. Best of luck to you and I like the idea of education I gave info to all my doctors about this to start educating them. That is an added trouble future folks do not need, going around to find a doctor or anyone in the medical profession that has a clue or just heard of it. Take Care
Janet
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
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Charlie123
- Posts: 22
- Joined: Sun Feb 05, 2012 9:31 am
Re: New member
Dear Janet,
Thankyou for your words of advice and support. I am fortunate enough to have found a PT who actually suggested this condition a lot earlier than any specialist. I believe these PT are hard to find but i live in lancashire and have been lucky to find she is local. I have also invested in a cushion though im fraid it isnt firm enough to protect the perineal region. I will keep searching.
I am still keen to hear from anyone who has bladder issues and if they have resolved post surgery.
Thanks again C
Thankyou for your words of advice and support. I am fortunate enough to have found a PT who actually suggested this condition a lot earlier than any specialist. I believe these PT are hard to find but i live in lancashire and have been lucky to find she is local. I have also invested in a cushion though im fraid it isnt firm enough to protect the perineal region. I will keep searching.
I am still keen to hear from anyone who has bladder issues and if they have resolved post surgery.
Thanks again C
Re: New member
For a cushion you can get a gardening kneeling cushion and then make a pattern by placing a paper under two hardback books with binding towards the center and 3-4 inches apart. Sit on them and adjust unitl it feels good and then cut a u with the sides per the pattern and sit with the opening in front. If you rectal pain you may need a clearance all the through so a trough vice u and the you have two pieces aand need to set them apart but keep the settin and I used velcro. Of cousre this does not have overall strength and works for hard surfaces so soft I put a board underneath.
Janet
Janet
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
Re: New member
Charlie 123, you say you are in Lancashire and found a PT who can help. I did PM you but I guess you didn't see it. PLEASE can you tell me who and where the PT Is? I'm desperate for any kind of help
1985 diagnosed fibro; 1990 hysterectomy with bladder suspension;2000 T12 (Maigne ) syndrome; urticaria and angioedema; sjogrens syndrome; adhesions; pelvic pain; two herniated discs in neck.
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Charlie123
- Posts: 22
- Joined: Sun Feb 05, 2012 9:31 am
Re: New member
Hi Poppy , sorry for late reply - i have sent you a PM - if you dont receive it let me know.
Charlie123
Charlie123
Re: New member
Charlie, I had frequency and some burning but don't recall urine retention. I wonder if it has to do with the fact that the pudendal nerve innervates the urinary sphincter. Anyway, most of those problems have resolved am I'm not on any medication now.
If you can get to a good pelvic floor physical therapist who is trained specifically in treating pudendal neuralgia you may want to give that a try before any invasive procedures.
Wishing you luck,
Violet
If you can get to a good pelvic floor physical therapist who is trained specifically in treating pudendal neuralgia you may want to give that a try before any invasive procedures.
Wishing you luck,
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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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: New member
Hi Charlie,
Sorry I can't help you with your specific questions but glad that you have found us here
. That was a stroke of good luck that your physio knew about PN although it doesn't surprise me one bit that she got there before the specialists. I have it in mind to send a picture of my bum to any and all specialists who have given me duff info over the past 4 years. That would be a during nerve decompression pic, I wouldn't want to scare them that much . . . .Although. . . .
Glad you are part of the team now, just such a shame you have got to go through all this to get here. One good thing . . . .as there was no trauma event that can be attributed to the onset of your pain ?? then hopefully, conservative treatments alone will help enormously. Let us know how you get on.
Take care,
Helen
Sorry I can't help you with your specific questions but glad that you have found us here
. That was a stroke of good luck that your physio knew about PN although it doesn't surprise me one bit that she got there before the specialists. I have it in mind to send a picture of my bum to any and all specialists who have given me duff info over the past 4 years. That would be a during nerve decompression pic, I wouldn't want to scare them that much . . . .Although. . . .Glad you are part of the team now, just such a shame you have got to go through all this to get here. One good thing . . . .as there was no trauma event that can be attributed to the onset of your pain ?? then hopefully, conservative treatments alone will help enormously. Let us know how you get on.
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.
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Charlie123
- Posts: 22
- Joined: Sun Feb 05, 2012 9:31 am
Re: New member
Dear Violet & Helen , Thankyou for your replies & Helen you really made me giggle . Yes and I would willingly join you in the rear end display ! 
just to let you know that I am having my first nerve block this week which I am glad of as sitting is impossible ! (even on my selection of homemade cushions!)My pain consultant has been wonderful & prompt . I know it's purely diagnostic but a few hours relief will be wonderful . Fingers crossed . I think I have a long road ahead but knowing others in my position can get their life back is such a comfort . God bless Charlie
just to let you know that I am having my first nerve block this week which I am glad of as sitting is impossible ! (even on my selection of homemade cushions!)My pain consultant has been wonderful & prompt . I know it's purely diagnostic but a few hours relief will be wonderful . Fingers crossed . I think I have a long road ahead but knowing others in my position can get their life back is such a comfort . God bless CharlieRe: New member
Hi
I am a new member. Just wondering if a PN operation is possible in the UK? I have the burning and lightning electric shock feeling in my left buttock.
I am with a Neuro Surgeon at Haywards Heath who does not know what to do but I am sure I have a trapped nerve which started years ago and has returned with vengance as I have not been able to work for about a year. Any advice welcome. Regards Andy
I am a new member. Just wondering if a PN operation is possible in the UK? I have the burning and lightning electric shock feeling in my left buttock.
I am with a Neuro Surgeon at Haywards Heath who does not know what to do but I am sure I have a trapped nerve which started years ago and has returned with vengance as I have not been able to work for about a year. Any advice welcome. Regards Andy