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  • Strange sensations

    It's been a over a year since my orchiectomy and August will make a year since my last cycle of chemo. The inner part of my thigh is still numb; which I know is normal. But when I have sex, specifically right when I orgasm, there is a sharp burning feeling there and can last for a while. It has always occured (since the orchiectomy) but it seems like it may be getting worse. Also if I'm laying down and take a deep breath there is a weird twitchy feeling there.
    I know the nerves don't always heal back right but I was just wondering if anyone was having any similar experiences. I have a checkup wed. Think it's worth asking the doc about?
    Thanks,
    Ryan

  • #2
    I experience the exact same feeling and it's been almost 2 years since the orchiectomy. The inner thigh, though, has regained much sensitivity. The sensation isn't painful, but is unnerving (bad pun ^_^). Haven't built up the courage to ask the doc about this, however.
    "We have since built museums to celebrate the past, and spend decades studying prehistoric lives. And if all this has taught us anything, it is this: no species lasts forever." - Walking with Prehistoric Beasts

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    • #3
      Thanks for replying. Glad to know at least one other person is having the same experience. FYI I was scheduled for a check-up so I asked my oncologist about it and he said to ask the urologist; which I figured he would. So I scheduled an appt with the urologist for 11 July. If you want I'll let you know what he says.

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      • #4
        ryan:
        Yes please post the urologists response. You situation may be unusual but even if you help one or two other people it will be worth your time.
        Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

        Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

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        • #5
          Ryan,

          I had my orchiectomy 18 months ago. I have had the exact same sensations you have. The burning sensation ranges from uncomfortable to painful.

          For me the sensation was the worst between 6 months - 12 months after orchiectomy. By saying the worst, I mean that now at 18 months out it is more common for it to be uncomfortable as opposed to painful.

          I never fully asked a doctor about it, but I would be really curious to hear what your urologist says, so please post his comments if you have a chance.

          Thanks.

          LB33

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          • #6
            I will certainly let you all know what my urologist says about it.
            I did not have a RPLND. I was scheduled to have it, then had a pet scan and it showed a spot in my lymph nodes. All my doctors suggested 3xBEP, and after reading and thinking about it decided that would be best.

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            • #7
              Same symptom

              I experience the very same thing as you. I've spoken to Dr. Einhorn about it and he says he has never heard of this before. He also went on to say it's nothing to worry about, could be the nerve endings where the testicle used to reside.

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              • #8
                I met with my urologist the other day. He said it shouldn't be anything to worry about; probably nerves that got damaged in the orchiectomy. But with it bothering me he prescribed Gabapentin, which is suppose to help with nerve pain; and the shingles.
                Wow, I'm really suprised Dr. Einhorn said he's never heard of it before though.

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                • #9
                  Strange Sensation

                  I have had the same problem, but i have also felt the same feeling when passing wind, well when i have to strain and also when going to the toilet, again when i have to strain (fairly hard).

                  So i would say its some sort of muscle that was cut and yet (if ever) to repair itself..

                  Ok, you all can stop laughing now !

                  Karl

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                  • #10
                    Karl:
                    Welcome aboard. Can you tell us a little about your case?
                    Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

                    Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

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                    • #11
                      Originally posted by dadmo
                      Karl:
                      Welcome aboard. Can you tell us a little about your case?
                      Hi,

                      Stage 1, mixed germ cell, 80% Teratoma, 20% Seminoma
                      Left testicle removed 16/10/2006.
                      Chemo 2xBEP starting 11th November 2006 for 6 weeks.
                      CT was clear, chemo was given as a precaution
                      Had 3 month, 6 month checks.

                      How about you?

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                      • #12
                        It was my son that got bit. He was stage III, but eveything worked as advertised so after the chemo and RPLND he's good to go. 3 years "all clear".
                        Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

                        Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

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