Don't know what i have..

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shanny63
Posts: 17
Joined: Tue Mar 18, 2014 10:42 am

Don't know what i have..

Post by shanny63 »

hi everyone, i am a 50 year old lady from melbourne australia....10 days ago i woke up with bizarre arousal, frequent urination and urgency...i have seen 5 drs so far...yes 5...saw a gynaecologist yesterday and she has ordered an mri and got me an appointment with a neurologist...they have no idea what is wrong with me...some are saying pudendal nerve entrapment is the most likely cause..

one said she thought i had caudal equine syndrome and another one thought i had ms...so i have been pretty much scared to death in the lat 10 days with no real answers yet.. :shock: I'm sure a lot of you have been thru the same problems....just wanted to say hi..i think i am one of you and hopefully i will have answers soon...best wishes everyone shannon
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janetm2
Posts: 987
Joined: Sun Jun 12, 2011 10:54 pm
Location: Maryland

Re: Don't know what i have..

Post by janetm2 »

Welcome Shannon,
Oh my, not sure what is your best choice but hope it is the least problematic. Although I know it is horrible waiting at least they seem to be getting you tested quicker than some who have gone on years. Let us know if you get a diagnosis.All the best.
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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Violet M
Posts: 7183
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
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Re: Don't know what i have..

Post by Violet M »

Hi Shannon,

Welcome -- I understand your fear and remember when I was going through those scary days. I hope you will find some answers here. I think it's smart to have cauda equina ruled out via the MRI.

You can check out the list of Australian physicians who know about PNE here: http://www.pudendalhope.info/node/56

We are about to add another physician to the list also. Here is the new listing:

Dr. Adele Burgess is a colorectal surgeon in Melbourne, Australia. She has a sub-speciality interest in pelvic floor problems. She conducts pudendal nerve testing as well as sacral nerve stimulation.

Adele Burgess
Suite 7, Level 2 - 8 Martin Street
Heidelberg VIC 3084
Phone: (03) 9457 6690
Fax: (03) 9457 6961
Website: adeleburgess.com.au

Take care,

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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