I'm not sure where to start
I have had pelvic and lower back pain for the past 20 years. Gymnast through college (cracked my tailbone on the beam a couple of times as well as too many other falls to count). I was diagnosed with IC and endometriosis (lazier for this) 20 years ago also.
10 years ago diagnosed bulging disc l4/l5 (and C4/C5).
Three years ago started tingling out of tailbone as well as more back pain.
Past 6 months tingling turned to burning, throbbing (like tight underwear on my legs, even when laying down), and spasms.
After exhausting all efforts on chiro, acupuncture, cold lazier, micro-current, massage, I had fusion of L4/l5 sept. 2012 which got me off the floor and functioning during the day (as long as I don't sit) but did nothing for nerve pain coming out of tailbone, sciatica or squeezing on upper thigh.
I've had two injections for pudendal nerve (Dr Vihn, Houston) but they haven't helped a bit. The first one gave me about 2 hours relief, the 2nd one none.
I take 1200 mg Gralise (Neurontin) & Cymbalta 60 mg. I also tried Lyrica (which made me crazy) and Depakote. Can't take any kind of Codein. Nothing really helps.
The only thing that really helps is swimming in my freezing pool at night right before bed. Unfortunately leg cramps keep me from swimming for very long.
I keep reading about a Houston group that deals with this. Can someone help me with that info?
New to forum
Re: New to forum
Welcome Sally,
If you go to board index and then scroll down there is a USA section and in there is Dr Renney Dr Ansel the Houston team.
Janet
If you go to board index and then scroll down there is a USA section and in there is Dr Renney Dr Ansel the Houston team.
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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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: New to forum
Hi Sally, welcome from me too 
As Janet mentioned the info you need is on the home page along with a whole host of other good stuff. It can all be a bit too much to take in all at once so ask as many questions of us as needed too.
Hope you can get to the bottom (sorry
) of your problems. Have you ever had a scan of the pelvis? I take it they did do one for your spine. I would also get a physiotherapist to check out your piriformis muscle and see if there is any tension there.
Take care,
Helen
As Janet mentioned the info you need is on the home page along with a whole host of other good stuff. It can all be a bit too much to take in all at once so ask as many questions of us as needed too.
Hope you can get to the bottom (sorry
) of your problems. Have you ever had a scan of the pelvis? I take it they did do one for your spine. I would also get a physiotherapist to check out your piriformis muscle and see if there is any tension there. 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.
Re: New to forum
Welcome, Sally. I think maybe you need more info before you decide whether your pain is being generated from sacral root problems or peripheral pudendal nerves.
Dr. Renney is no longer working with Dr. Lee Ansell, the Houston neurosurgeon who treats pudendal nerve entrapment. You would need to contact Dr. Ioannis Skaribas, pain specialist -- you can google him. We have not posted his contact info yet because he has not responded to our requests for permission to post his info on the website but several patients have said he is the person to contact.
Violet
Dr. Renney is no longer working with Dr. Lee Ansell, the Houston neurosurgeon who treats pudendal nerve entrapment. You would need to contact Dr. Ioannis Skaribas, pain specialist -- you can google him. We have not posted his contact info yet because he has not responded to our requests for permission to post his info on the website but several patients have said he is the person to contact.
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.