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Get second MD for genital numbness?

phenom34pphenom34 Posts: 27
edited 06/11/2012 - 8:52 AM in Chronic Pain
I noticed some sciatica and genital numbness on one side of the penis/ and butt about two years ago. I saw a couple doctors promptly and they basically blew me off. I did some physical therapy and took oral cortisone which didn't do anything for me. I am in my 20s :(

Urologists cleared me as everything normal down there.
Chiropractic didn't do anything.

About a year ago I decided to have a microdiscectomy on l5-s1, it went well and I noticed instant pain relief, however was left with some numbness in the genitals(lost sensation and pinching sensations to be specific) still ( i think it did improve but I don't remember exactly). I also notice a bunch of foot numbness (to be specific pins and needles in foot, no loss of sensation). As any doctor would say, nerves take a long time to heal and he was reassuring and optimistic.

I was cleared to do everything again and although i didnt have much pain, it got aggravated with heavy labor, etc. I never fully recovered from the genital numbness.

We did another MRI and found another minor herniation.

Went to a few urologists who said to get back surgery again and that urologically i am ok.

Also tried a series of 3 epidural shots and i think it did help.

Then out of nowhere I had a bad flare up (i honestly haven't done anything that wouldve hurt it for over a month). My sciatica attacked, numbness in foot got worse, and genital numbness went to complete loss of sensation.

I got ahold of my doctors.

This did go down a bit, but i feel like i haven't reached baseline again, the numbness is starting to cause erectile problems.

Pain specialist said to take it easy for a few days, stretch, yoga, traction, etc.

-Neurosurgeon #1 was perplexed at this and said he had never heard of numbness in the genitals from this, so he ordered a pelvic MRI which was normal. He said he would do some research and talk to colleagues for me, did seem very interested in helping. He said he really doesn't know what to do for me, he's reluctant to offer me a fusion because he thinks it wont help my numbness and its risky. The s1 nerve root doesn't really innervate the penis although it is possible. He did mention that often piriformis muscles are tight or hypertrophied, or others in the area (i was a bodybuilder/powerlifter) and they could possibly cause issues. He also mentioned that although i have a mild herniated disk, he thinks my nerve root probably has enough room to not be compressed or affected

-Neurosurgeon #2 said a microdiscectomy probably wouldn't help whatsoever so try physical therapy.

-My family practice doctor wants to backtrack and rule out all other possible affections as we are getting nowhere with the back stuff. He wants me to really do physical therapy and a lot on my own.

-Orthopedic back surgeon that did my first job told me that he really doesn't think its my back that is causing this as I am his only patient with this as my main complaint. He is very reluctant to do the surgery again although he said he would do it if i absolutely want it, under the assumption that it likely won't do anything for me and might even make matters worse. At the same time, he does do many revisions with great results, its just that 2nd time around has slightly bigger risks.

-I have excellent strength, reflexes, my pain went back down, btw.

PS I asked them all about cauda equina syndrome, and they said my disk is definitely not pushing on that area and I don't have that.

This numbness in the genitals is driving me nuts and its starting to hurt my sex life. I really don't mind the tingling in the foot, although any improvement on that would be nice. If this gets worse, id likely have serious male problems.

Anyone have any input as to whether I should do this or not?

My plan is to try some more physical therapy (new place as the last one was a whackjob), go to an osteopathic/physiatrist, try some oral cortisone, and if nothing works, i feel like i want to try another microdiscectomy.


  • interesting...have you looked at a dermatome map?
    It will tell you which levels impact which nerves.

    I'm a female so not 100% sure of the nerve impacts. I can tell you that wen my L5-S1 disc blew (lost a large piece of disc...twice), I got and still have numbness in the perineum area (e.g. gential area). As a matter of fact, the reason they wanted me to make a quick decision on my first MicroD is because when the genital area goes numb, they worry your bladdar and/or bowel nerves are impacted.

    That being said, not sure how it impacts man 'functions' but I suspect if there's an impingement, it indeed can effect you. I'm not a doctor.

    Good luck.
  • A mild herniation can compress the nerve roots that effect the penis , bladder , bowels or sphincters. While you may not have a true Cauda Equina case, there is something that is effecting the nerve roots to the penis, and this would be a sensory nerve root.
    Do you also have difficulty starting , maintaining or stopping urine flow?
    Since the urologist has ruled out other causes of the parasthesia of the penis, I would suggest that you find a surgeon in the biggest city near you and see them for a consultation.
    Here is a link to information regarding male sexual function in cauda equina lesions.
  • i have the exact same problem, when i woke up from my surgary i was numb on the left side in the same areas now the numbness is moving into the right also and im having troubles with bladder retention. ive been back to my dr and he basicaly thinks im crazy.........is there any awnsers to what is going on? thanks so much JESS
  • Jess...I actually lost feeling on the left side when I herniated. I guess I noticed after they gave me enough drugs in the ER to send me home. Everywhere I hurt, went numb.

    Anyhow, the MD didn't resolve anything the first time. I went back and found another LARGE herniation (same level) so in for revision MD. I still am disappointed that I've not regained any feeling (and keep a close eye on the perineum numbness). My doctor told me he hoped for some of the numbness to subside (perineum, buttocks, back thigh) but said it could take up to 2 years. I'm over a year out and no improvement. He did indicated that while my nerves weren't compressed terribly long, they probably did take a really bad hit the first time so I may not regain.

    On a positive note, I did get a lot of strength back in my leg so I know I improved. I still am hopeful to recover from the nerve damage. This summer I will go see him again just to be sure I'm staying status quo.

    It's quite frustrating. I am not looking for more surgery but darn I would like to get some feeling back at least in the left groin/buttocks.

    If you are having trouble, please talk to your doctor. You are NOT crazy. If your doctor thinks that you are crazy, find another doctor. I only say that because they should (1) make sure you haven't herniated more (2) make sure fusion hardware isn't irritating the nerve.

    I'm sure he thinks you are 'crazy' because he's concerned that you might 'blame him'. A risk of surgery is nerve damage. Mine was not the result of surgery but of the herniation.

    Anyhow, talk to your regular GP if you are having bladdar issues. You don't want it to get worse. It could also be inflammation which a steroid (like medrol dose or prednisone) can help with.
  • thanks so much for the advise...i went and had a nother MRI and it showed i had a pocket of spinal fluid built up( ya dr cut the dura lining during surgary which took 4 stitches to close....sad thing is is that he wrote in the medical reports that there were no complications and no CSF leak) and that L3-L4 had a centrel buldge. i also had a myelgram done but dr said it was ok? i am now waiting for my family dr to get a referral to a new neoroligest. like you said not looking for more surgary......but its sooo frustrating when you cant feel your groin or bum...mine also radiates down the back of my thigh...and my foot is also numb! It's nice to now someone else is exsperiancing the same thing as me and im not just CRAZY! JESS
  • I'm sorry you are having this trouble.
    I have no feeling in my left groin, left butt, left back thigh, and left heel to outer toe.

    My husband pats me on the butt as a love pat or goose. I laugh and tell him I appreciate the effort but I can't feel it.

    Good luck at the neurologist.
  • thanks so much.......i will keep ya posted
  • havent been on for awhile, not much has changed! i had a nerve root block, then 4 sets of steroid injections and NONE of them worked. I still have the same numbness and the pain seems to be getting worse. I go to the doc on the 23rd to have a big pocket of fluid next to my spinal cord drained OUCH......trying to figure out what caused this fluid build-up. any ideas? thanks jess
  • Hi Jess....good to hear from you but would have been better if you told me things were improving. I have no idea on the fluid build up.

    I'm 'status quo'. My back pain is actually increasing but luckily the leg pain is still sporadic and mostly a non-issue. Still all the same numbness, though occassionally I 'think' I can feel something where I didn't used to. Not sure if I'm growing used to my 'new' life or just still being optimistic but either way, I am living a bit more and crying a bit less.

    Maybe if you don't get too many responses...start a fresh post/thread?
  • thank you for the advice on starting a fresh post! just wish there was a majic potion to make all the pain go away :)
  • Hello I was curious to know if you ever found out about why you got fluid on your spine and out of curiosity am wondering after having it removed, did it help your other pain? Thanks.
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