Possible new sufferer looking for some help please

Welcome to HOPE. We have tried to provide a place for newcomers to make their introductions. We will try our best to make you welcome and guide you through our website and Forum and assist you as best as we can through any questions you have regarding Pudendal Neuralgia.
janetm2
Posts: 987
Joined: Sun Jun 12, 2011 10:54 pm
Location: Maryland

Re: Possible new sufferer looking for some help please

Post by janetm2 »

If you are not worse for the wear it could be good at this early stage. Cannot count any chickens good or bad yet but keep going with the exercises and hope it will sort out in time. Although no one wants to lose any functionality being able to keep away from the extreme pain and surgery would be nice. I had a flare last night and then my foot kicked up today but managed to make it to work for most of the day. Looking towards a better 2014 for everyone.
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.
restlessness
Posts: 2
Joined: Wed Jan 01, 2014 4:57 am

Re: Possible new sufferer looking for some help please

Post by restlessness »

Hi Roger!

I am a new possible sufferer from London.

I am suspecting that I have PN symtoms after some spraining injuries, and struggle quite a lot finding Pelvic Floor / PN-awared Physiotherapist around me. From what I read about you visiting UCL, so i guess you're currently in London? Would you mind shedding me some light, and recommend me places where I might be able to get some help? (PT / Chiro / Osteo). Would be really great if you can drop me a private message.

Thank you very much, and wish you all the best.


Jeff
mary jane
Posts: 130
Joined: Sun Nov 03, 2013 4:13 pm
Location: uk

Re: Possible new sufferer looking for some help please

Post by mary jane »

@ Jeff in london you can go to McTimoney chiros
tiny bartholin infection triggered vulvar nerve pain.
Diagnosed vulvodynia Sept '13 (no burning but electric shocks, paresthesia, aching, buzzing)
Feb 14- Taking 50 mg Ami/Elavil
May 14-pain free with 50 mg Amitriptyline and 300 mg Pregabalin. Back to normal
Dec 15- weaned off all medication, pain free, wearing skinny jeans
April 17- pain returned, Amitriptyline 50 mg. Something doesn't make sense in my diagnosis.
Currently treating depression and anxiety
Roger
Posts: 40
Joined: Fri Nov 29, 2013 4:10 pm

Re: Possible new sufferer looking for some help please

Post by Roger »

Well my muscle spasm is easing and the burning PN appears to be easing a fraction some of the time! So fingers crossed.

I'm also exploring a link between the use of PPIs and this PN/muscle spasm.
janetm2
Posts: 987
Joined: Sun Jun 12, 2011 10:54 pm
Location: Maryland

Re: Possible new sufferer looking for some help please

Post by janetm2 »

Good to hear a bit of progress. It all is slow with PN but anythhing positive can lift you to continue and hope! I am starting some vacation planning hubby deserves a getaway and work is picking up so I will be ready, too. The wind chilling cold is a killer these days.
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.
restlessness
Posts: 2
Joined: Wed Jan 01, 2014 4:57 am

Re: Possible new sufferer looking for some help please

Post by restlessness »

Hi everyone!

Thank you so much for your help, Roger and Mary Jane. Sorry for the very late response. I have checked out the list for manual therapist, but it seems that I can't find one that I can get access to, unfortunately. I have been seeing a pelvic floor PT in London, did internal release for twice, yet fail to see any improvement yet. I do not think she has gone through and checked my pelvis thoroughly, I might ask again next time.

I hope I am not hi-jacking the post too much, please allow me to add a little history about myself here. I have twisted my back / pelvis in a sudden stretch that I did sub-consciously during work. (9 DEC,2013) I have sciatica two days after that, did MRI after 2 weeks ( thanks to insurance ), report was clean.I have symptoms of numbness / heaviness near perineum and slight penile pain appeared after around two weeks after I got injured (slight tingling when I did MRI).

By early Jan, the lower back pain due to sprain or whatever reason is almost gone. Right leg is still tingling and weak. Then I realise I have sore piriformis muscles. SI joints are painful right from the very beginning, uptil recently. (decreased due to the second PT that i am seeing)

Though paranoid, the clean MRI kind of suggest that it's not a disc / spinal problem. So the question is, whether I got PS or SI joint injury when i twisted my pelvis and back, or whether I accidentally got PNE when I twisted myself. This seems to be a question of egg / chicken. The second PT that I am seeing says that it's my chronic stiff lower back muscles that are jamming everything together, and cause stress and compression / irritation to my Sciatic and Pudendal nerve. She mainly does manual therapy on my thighs and lower back and accupuncture on my piriformis. My SIJ pain is getting better (it seems), yet the piriformis pain and other symptoms are still here. Perhaps that take longer time to improve, and at least, it doesnt seem that it's getting worse.

I am 25 and haven't experienced any major health problems before. I have always been very tense and paranoid about health and this is bringing my anxiety to a new level. I do not know what to do next. The GP i am seeing basically said that she would refer me to a back pain / pelvic specialist, but I havent heard from them yet. I think I might give PT a little more time, and have some faith in it.



much love,

Jeff
janetm2
Posts: 987
Joined: Sun Jun 12, 2011 10:54 pm
Location: Maryland

Re: Possible new sufferer looking for some help please

Post by janetm2 »

Hi Jeff,
I would stick with the PT for awhile since you are seeing progress and SIJ issues can take time to fix so you are seeing progress quicker than some of us. Not sure if having your gp give you something for anxiety would help, stress is definitely a negative for these pain issues. Good luck and I am sure others with give advice.
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.
Roger
Posts: 40
Joined: Fri Nov 29, 2013 4:10 pm

Re: Possible new sufferer looking for some help please

Post by Roger »

I've been dealing with SIJ issues and impact periformis syndrome for years now. It takes a real lifestyle change and a strong commitment to persist with all the stretching etc. if like me you get better and forget about it all for a while I guarantee it will come back to haunt you. So my advice is persist with your therapist and stay away from the surgeon, scalpel and needle.
The PN joining in last year was a new dimension for me, but I believe there is a connection to the muscle spasm and you have to resolve that so that the nerves can heal. It takes a very long time for nerve damage to heal which means the muscle spasm must be dealt with everyday.
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Violet M
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Joined: Mon Sep 06, 2010 6:04 am
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Re: Possible new sufferer looking for some help please

Post by Violet M »

Roger, I agree it takes a commitment to do your PT exercises regularly. Some people have to avoid stretching due to chronic ligament strain with pelvic laxity -- at least I did. You just have to find what works for you.

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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