Announcement Module
No announcement yet.

Pain/numbness after inguinal orchiectomy

Page Title Module
Move Remove Collapse
Conversation Detail Module
  • Filter
  • Time
  • Show
Clear All
new posts

  • Pain/numbness after inguinal orchiectomy

    Hello all,

    I'm 9 months post testicular cancer. My right testicle was removed during the orchiectomy and no follow-up treatment was required, other than CT scans and blood work every 3 months for the first year.

    But here's my problem... Since the surgery, I've had a strange numbness in my right inner thigh, and it extends up to the groin area and surrounding the scar. It's numb yet painful at the same time, if that makes any sense at all. For example, if I touch it, the surface of my skin feels numb, but I feel a discomfort in the nerves beneath the surface.

    I've been told this is "normal" and that it will go away. I feel like the doctors are dismissive and don't take it seriously. I understand it's not life threatening, but this is my crotch area, so it matters to me.

    But orgasm is the real problem. When I reach orgasm, a warm throbbing rushes over that area (not in a good way!). It hurts and feels like an invisible hand is gripping the area and squeezing hard. I hate it enough that it's affected my sex life and I hardly even feel like it anymore because I dread the pain. (The pain probably lasts less than 30 seconds, but it knocks the breath out of me.)

    About 2 weeks ago, I read that patchouli oil increases blood flow and helps heal. I'm open-minded to alternative medicine. I obviously wouldn't try to use it to heal cancer, but I don't see any harm in rubbing some oil on my skin to see if it helps with pain. So I did.

    I massaged the oil into the area and applied light pressure. It hurt a lot and knocked the wind out of me. I did it every few nights, and each time, it felt a little bit easier. There was a tingling feeling from the oil too, so I felt like something must be happening.

    I now feel like the pain in that area has been reduced by 50%. It's much more tolerable when I reach orgasm. For 9 months, I saw no improvement at all. And now, in just a few weeks, I can actually feel relief from the surgery.

    Has anyone else experienced this? The pain and numbness? What did you do to heal it? And why would orgasm trigger it? I'm assuming it has something to do with a rush of blood flow to the area, perhaps overwhelming the nerves? I don't know.

  • #2
    This is what it is. . There is a nerve that goes right by and through the inguinal area.

    I have the inner thigh tingling after my RPLND but I'm only 4 weeks out. It isn't bad though and I don't have any orgasm pain.
    6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
    6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
    7/7/15: bHCG 56, AFP 42, LDH 322
    7/13/15: begin 4xEP, end 9/18/15
    10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
    10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
    4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
    4/20/16: RPLND @ IU - teratoma only!
    10/22/19: all clears up to this date!


    • #3
      Biwi - This is very valuable information. I don't know why I've described this to multiple doctors and none of them have told me that it was this. I did some research after reading the link you shared, and found physical therapy as a suggested remedy. I recall asking one of my doctors if physical therapy would help and he said "no."

      I suspect that I've unknowingly been doing my own home version of physical therapy, and that's why I've started noticing improvements after using light pressure and massage.

      Thank you for finally giving a name to what's been bothering me. And good luck on your recovery.


      • #4
        Glad I could help! Yeah there is definitely more info out there on the 'net once you know it is the "Genitofemoral nerve" causing the issues.
        6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
        6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
        7/7/15: bHCG 56, AFP 42, LDH 322
        7/13/15: begin 4xEP, end 9/18/15
        10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
        10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
        4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
        4/20/16: RPLND @ IU - teratoma only!
        10/22/19: all clears up to this date!


        • #5
          I didn't have the painful sensation you describe, but did experience the numbness around the scar. I believe this is normal and some sensation will return over time. I had significant numbness around my abdomen after the RPLND surgery, but I just passed the one-year mark and full sensation has returned. Glad to see that you found physical therapy and the oil helps. I have increased my stretching and focus on flexibility since both surgeries and found it very helpful in minimizing residual pain, numbing, etc.
          3/16/15: Urologist visit for suspicious lump. Tumor markers negative. Ultrasound showed solid mass.
          3/18: Radical left I/O.
          3/24/15: Pathology: 100% EC w/ LVI present. Chest CT clear, Abdo CT shows 3 enlarged nodes (1.0, 1.1, 1.6cm). Clinical Stage IIA.
          5/4/15: Primary (open) RPLND w/ Dr. Foster at IU. 34 nodes removed, only 2 had presence of EC. Pathological Stage IIA.
          June 2015: First ALL CLEAR!
          August 2015: ALL CLEAR!
          September 2015: Post-RPLND baseline CT scan ALL CLEAR! Lymphocele measuring 9x5x5cm was noted, surgeon said it was harmless and should resorb within a year.
          November 2015: Bloodwork and chest x-ray clear
          February 2016: Bloodwork, chest x-ray, CT scan clear
          July 2016: Bloodwork, chest x-ray clear (CT scan in September)


          • #6
            That is a very valuable link. I've never heard of it myself. I would definitely look to get Physical Therapy for that.

            Speaking of PT. I had issues in my left pelvis and very low back months after chemo. I ended up getting PT with a doctor that specializes in the Pelvic Floor muscle groups. These docs can be hard to find....mine was a Gynecologist.

            - Matt
            March 4th 2014: [AFP = 2.5; bHCG = 6; LDH = 618]
            March 13th: Left IO 100% Classic Seminoma
            6.3 x 5.1 x 3.8 cm, no invasion of anything
            LDH never fully normalized
            Stage: IS
            Watchful Waiting
            May 1st: promoted to Stage IIB with two PET active tumors in the para-aortic lymph nodes 2.5 & 2.4 cm
            May 12th: started 3xBEP
            Neupogen during Cycle 2 and 3
            July 8th: Last Bleo shot of Cycle 3 -- chemo completed !
            August 4th: Post Chemo CT/PET scan
            September 4th: Port removed
            January 2020: 5.5 YEARS ALL CLEAR !


            • #7
              Hi Guys,

              I know its an old post, but did your numbness improved eventually? How are you now?



              • #8
                I had that numbness and tingling in my inner thighs after the RPLND also. It went away within a few months.
       | @K2xxSteve on Gab
                (Social Media with actual privacy, cancer support groups, encrypted secure chat & more)

                Feb 2011, Stage IIB, 4xEP, RPLND, PTSD
                My Survivorship Thread | All of my Blogs
                ONTACT ME ANYTIME!


                • #9
                  Hi SP,

                  I'm nearly 4 months post op, still have numbness and pain mainly when I wear tighter jeans. Did you experienced any pain as well?


                  • #10
                    I had IO 8 months ago and it still does not feel right. Numbness never went away. And while I do not feel pain I do feel aches. I am yet to see ANY improvement.
                    Last edited by vpirh; 04-28-18, 06:57 AM.


                    • #11
                      vpirh & Some Grey, what do your docs say?

                      Jan, 1975: Right I/O, followed by RPLND
                      Dec, 2009: Left I/O, followed by 3xBEP


                      • #12
                        “it’s normal” is what he said after 4 months. Now I just suck it up and try to learn to live with it. Not sure what he can do about it anyway.


                        • #13
                          Hi everyone, first time poster here. I too had uncomfortable orgasms post surgery presumably from inguinal nerve damage at the incision site. I would experience warmness and an uncomfortable tingling/stinging sensation in my pelvic area and inner thigh. For the longest time I was able to prevent the discomfort by having at least one orgasm per day. The longer I went without having an orgasm, the more painful my orgasms would be. Lately the stinging sensation has come back even if I orgasm every day, which I find unusual. Does anybody know why this could be? Thanks in advance for any input.


                          • #14
                            There is a urologist in clearmont florida who specialize in pain conditons related to urology. You can find the website at PUR
                            He has worked wonders for my groin pain. You either have a trapped nerve. Pinched nerve or scar tissue is pressing on the nerve. He has done a couple of minor surgries that have killed the pain for me everytime it comes back and i have been dealing with it for 6 yr off and on. My pain would either be numbness in the groin or burning like someone burned me with a hot poker. It is just below the inner most part of the I/O scar
                            Another thing you can do is stretch that groin muscle to help relieve the nerve. Stretch that leg straight back with your foot turned side was and then lean forward on the other leg and look away from the side that you have the nerve pain. It will help. Its not a permanent solution but it will give relief from the pain for a couple of hours. Everytime you start to feel the burn, just stretch it out
                            Last edited by eodtech2001; 07-13-18, 10:07 PM.
                            Jan 2012- U/S mass in Left testicle
                            Feb 2012- I/O performed to remove cancer
                            Mar 1,2012- pathology pure seminoma
                            Mar 7, 2012 PET SCAN stage IIa
                            April 2012 Mayo clinic carbolite.
                            May 2012 carbolite failed, started BEP x3
                            August 7th 2012- BEP complete
                            April 2013 CT/PET show relapse
                            May 2013 RPLND
                            Aug 2013 Relapse again Started VIeP x2
                            Oct 2013 HDC AUTOLOGOUS
                            Dec 2013 HDC completed CT/PETSCAN 1.1 cm x .8 cm right lower lung lobe
                            Feb 2014 confirmed false positive all clear FINALLY !
                            Jan 2015 1 year cancer free Pet/CT scan
                            Jan 2016 2 years cancer free "Pet/CT scan
                            Jan 2017 3 years cancer free "Pet/CT scan
                            Jab 2018 4 years cancer free "Pet/CT scan, labs, xrays


                            • #15
                              Thank you I will give that a try.