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Dr. Berkoff, CYCLISTS SYNDROME/PUDENDAL NEURALGIA
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BrenBren30813 posted:
I will try very hard to be brief, but I'm desperate for another professional's opinion on my case; PLEASE HELP:

I've seen 20 doc's over the past 4 yrs. for what (could be) pudendal neuralgia. I do have SI joint dysfunction as well, as my pelvis is very unstable; but I find that secondary to my original injury: I slipped off my bike pedal and crashed down on my bike's seat...kept cycling 50+ miles/week and playing tennis, then pain got worse over a period of 2 months from sitting at a desk job. I have pain in the L groin/buttock, burning and stinging down the left leg and into my calf, and low back pain at L5 S1, S2, S3 and S4. I've had numerous images of my lumbar spine w/and w/out contrast, seated MRI's, a bone scan, etc.A rheumatologist consult (bloodwork), and the only thing visible is a slight disc bulge at L5S1 - everything else is unremarkable.

I've been to the Mayo Clinic where I received a left pudendal bloc of Lidocaine (which offered total relief for 14 hours - but this was before the advancement of my current pain- and the doc says it wasn't enough relief for it to be the source). I feel he was right on target.

I've been to the Cleveland Clinic also. The doc I saw there has offered nerve ablation or the SCS implant (at S2,S3, and S4). His fellow did the exam, and he didn't touch me. He went solely on the fellows exam and my explanation of my history relatvie to 11 steroid injecitons.

My doc in my current town says he'll do the SCS implant because it is "less invasive". The C.Clinic also wants me to complete a non-invasive multi-faceted pain managment program before the either of the 2 procedures. My current doc will do the implant after I just see a pain psychologist. I agree with the non-invasive approach, but I cannot leave my family for 1 month to go to the C.Clinic for this program.

I currently work with a Women's Health Specialist who does internal and external work - for now she is my best source for pain management and most accurately identifies my problems; but I am here most extreme case. She has identified the majority of my pain to be (more specifically) the obturator internus (left) as well as the pubococcygial (sp) on the left. Myofacial pain is present; along with disruption in flexion....my muscles are so tight and just seem to bite down on the nerves. She is teaching me biofeedback/relaxation along with her program...her estimate of my seeing significant results is 6 months. I will start cognitive therapy next week and do this in conjunction with the PT.

At what point should I consider something so invasive? Many doctors aren't familiar with pudendal neuralgia AKA "cyclists syndrome"(only a handful in the US and France), and the docs I have seen will be "guessing" on where to do an ablation (S2,S3, and S4 nerve roots), and the leads from the stimulator would reach that area as well. BUT THEY HAVE NOT done this before....

I'm scared about these processes, but in chronic pain daily. I'm only 34 and have a 19 month old. My latest choice for therapies bring me to the end of the road, as for all that I've tried. I want more children...and hope to ride again, but I'm accepting that won't be possible.
If you have any idea on how I could get help, myself and my family would be so grateful.

Also, can women who plan on becoming pregnant have either of these procedures done (before conception, obviously)?

THANK YOU for your time, Sincerely, Brennan
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DUKE MEDICINE
David Berkoff, MD responded:
Brennan,
To say this sounds like a complicated problem would be an understatement. Based on your significant work-up and response to that lidocaine nerve block it is quite reasonable to consider ablation. I will admit I personally have never treated a cyclist that has had to go to this extreme. Your womens health specialist may be working in the right area. The obterator internus along with the gemelli's can cause similar type pain. Has anyone ever looked closely at your hip? I also do not understand how the pudendal nerve is causing your radicular symptoms down the leg and understand why your workup had repeatedly focused on the lumbar spine. I think before ablation you need to find a doctor who is capable of better confirming that this is truly PN syndrome before you have an ablation.
Good luck, I know chronic pain can really be taxing.
 
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BrenBren30813 replied to David Berkoff, MD's response:
Thanks for your response, Dr. Berkoff.

I've had MRI's and X-rays of the left hip. What do you mean specifically? I do have pain there, and there are issues with muscle nots, but the pain is more centrally located around those muscles I mentioned.

I was told by my PT that pudendal nerve pain can mimic sciatica. I have constant buring in the leg, it's not like shooting/electrical pain. It just burns, and the line corresponds with the route of the sciatic nerve.

Initially my PCP (4 yrs ago) recommended imaging of my lumbar spine...even though I told her specifically that the pain started in the groin. My back, in my opinion, has little to do with it. I do have horrible SI joint pain from time to time...what's interesting is if the joint is painful, the pudendal stuff isn't. There have only been a handful of occasions where I had severe pain in both simultaneously.

Would the nerve roots in the sacrum (S2,S3, and S4) be my target since they lead to the pudendal nerve?? For ablation, I mean. Im scared as those are the nerves responsible for bowel/bladder/sexual function.

Thanks again so VERY much, Brennan
 
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dansh replied to BrenBren30813's response:
Brennan, I know your post was 4 years ago but I have similar symptoms. Can you tell me if you figured out what your injury was caused from and if you have found any answers. Have you looked into hip impingements also called FAI. My research has lead me down that path. I just have FAI surgery about 2 weeks ago. It is to early to tell if it's going to be my answer but if you are still looking for answers I would recommend looking into it.


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