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Bilateral Orchiectomy Sept 15th and scared!

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  • Bilateral Orchiectomy Sept 15th and scared!

    I guess I really have no right to be scared because unlike the rest of you gentlemen, I am not a cancer patient, but I just can't help it. I can't even begin nor can I even attempt to imagine what any of you have been through in all of your journeys. Nevertheless, I hope I find you all in good health and perhaps you can help out a 51 year old man who is still scared and has many questions. I may not know all the correct terminology any may get confused a bit so please if you could put up with me a bit

    To make a long story short, since childhood I've suffered from testicular pain and they would get swollen. Diagnosis was epididymisis. As a side note, I had this even before I was sexually active despite how others believe it's due to an STD. Antibiotics always cleared it up until later in life... mid 40's. All tests kept coming back negative. No infection, sonograms looked good. Doctor's were stumped and suggested it was psychological. I stopped messing around with the local urologists here in Brooklyn and went to New York Columbia Presbyterian Hospital Urology Dept. All their tests also negative. They said my chronic pain was due to all of the severe infections. So a nerve block was done and I was a good candidate for a bilateral denervation. Awesome! I'm going to be pain free! Surgery was done April 2015.

    I'm still miserable. Testicles and epididymis still swollen, sometimes I keel over in pain, swallow as many 800mg ibuprofens as I can along with ice and yet other times not so bad. I'm presently on 100mg testosterone cream made from a compounding pharmacy, My sperm is dead, suffer from ED, Viagra, Cialis are hit or miss..mostly miss. I am single and needless to say my love life has been almost non existent because of this.

    So...after the latest attack last week, I don't care anymore.... I want them gone! Out of me! Good Bye! See Ya!

    Emergency visit to Surgeon 2 days later agreed they should come out. (Of course ultrasound and blood and urine were all normal)

    OK Whew! So that's my story.... Now, I don't even know where to begin with my questions... so I just want to know EVERYTHING! The doctor did say I could ask him anything I wanted but of course I just went blank saying to myself OH MY GOD WHAT HAVE YOU JUST DONE! and he is not the type to tell you what he does nor what to expect. All I know is that it is an approximately a 2 hour surgery, he will use size large saline prosthetics, do it inguinally and to expect a call the day before surgery from the hospital.
    I'm getting confused as to what I read from others. So, baby words please. Also, I know I should call and ask the doctor my questions but he is on vacation and coincidentally he is returning the day before my surgery.

    Some of the main questions I have are...

    1) How long did it take you to recover? Before sexual relations? How has sex changed?
    2) Please talk about mood swings/flashes/irritability and testosterone. Creams vs shots.. right now I'm still not within a normal range and it's been 5 months.
    3) Ejaculate. Nurse told me the volume should be almost the same because most of it comes from the prostate. I'm not sure she is correct on this.
    4) Prosthesis. Are they comfortable? Do they last a lifetime? Suture or not to suture? Surgeon said he sutures in place. I've been reading of stories that they often don't lay correctly as normal testicles with sutures.

    I'm sorry for the long post. I feel kind of guilty asking these questions knowing that some of you may be going through much worse than I. I can promise all of you that I will continue to share my own experiences with all and anyone of you who need it in the future. I'm just going through a really hard time right now. I'm not in pain at the moment and I don't want the surgery!

    Steve

  • #2
    1-I can't recall exactly, seemslie the first week was pretty uncomfortable,probably around a moth before,I felt pretty close to normal.
    2-I had no trt for two weeks post second I/O. I will never consider "hot flash" jokes funny ever again. No noticeable mood swings or hostility on testosterone. You are only replacing what your testicles normally produce, so why would it be any different?
    3-Nurse is correct.
    4- No idea. Didn't see any reason
    Jan, 1975: Right I/O, followed by RPLND
    Dec, 2009: Left I/O, followed by 3xBEP

    Comment


    • #3
      1. I'd say 3-4 weeks before things were mostly normal again. For me, sex has been better since HRT.
      2. Better mood and more energy on HRT. Assuming you are on the right dose. 100-200 mg per week should do the trick. Injections are by far the easiest route and the least expensive.
      3. Nurse is correct. Only slightly less volume.
      4.Took me about 6 months to get used to mine but now they pretty much feel like the real thing. Mine are sutured in. Chances are the new ones won't sit anything like your real ones. You will adjust to them over time. They are better than the alternative.

      Comment


      • #4
        Same answers as everyone else.

        1. Although I/O is a major operation, in terms of what it does and its ramifications, it is (really) a pretty simple and minor operation. So give yourself a couple of weeks off, but it shouldn't be much longer than that.
        2. I'd say I haven't had any detrimental effects from TRT. Unlike Dave, I started my immediately after my second I/O and can honestly say I have felt no real difference - just the same as usual!
        3. I had the same question when I went for my vasectomy and got the same answer. Also the "feeling(s)" are just the same before/after the I/O.
        4. The most problems/issues I've heard about prosthetics is for those who have only one. In that case the placement can make a difference. For my first, there was a noticeable difference in position between my false one and real one - however that difference mainly noticeable by me. Now that I have two false ones, they both look and act like each other and I have one (first) that is sutured and one that isn't ("perch trained" and "free range" as my missus describes them).

        Take care, DZ.

        Jan 2009: RHS (Seminoma) & RT
        Mar 2010: LHS (Embryonal Carcinoma)
        Sep 2010: Relapse & 3 x BEP
        Mar 2015: Five years "nut free"
        http://doublezeroami.blogspot.com

        Comment


        • #5
          Originally posted by Davepet View Post
          1-I can't recall exactly, seemslie the first week was pretty uncomfortable,probably around a moth before,I felt pretty close to normal.
          2-I had no trt for two weeks post second I/O. I will never consider "hot flash" jokes funny ever again. No noticeable mood swings or hostility on testosterone. You are only replacing what your testicles normally produce, so why would it be any different?
          3-Nurse is correct.
          4- No idea. Didn't see any reason
          Agree with Dave. I was a one-nutter who had TC and had my only one removed. So i'm ballless lol. I started TRT right away and only had one or two cases of night sweats. Been on Aveed long term injections for about 6 months and feeling 100% normal. Ejaculate is pretty much the same amount. I also did not do a prosthetic. I was comfortable having one all my life and I am already married with child, so how I "looked" was not very important and it wasn't a big deal to my wife either.
          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 - 9/18/15: 4xEP
          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!
          9/27/2018 all clears up to this date!

          Comment


          • #6
            Thank you everyone who responded. It sure helps getting 1st hand knowledge from others who have gone through it themselves. I am presently trying to get my ducks in a row prior to surgery to see how much if any my insurance will pay as far as testosterone goes. Supposedly, it's up to what kind the doctor prescribes and that's when it gets complicated as far as costs and coinsurance and high deductibles. When I'm on food stamps but don't qualify for free medical it just sucks! I am glad to hear that the amount of ejaculate stays about the same. I guess any little plus is a good thing .

            DoubleZero, which do you prefer, the sutured or unsutured prosthetic testicle? I don't know if I even have a choice in the matter. Of course I want them as natural looking as possible. If anyone else can chime in on this, it would be appreciated.

            Thank You all

            Steven

            Comment


            • #7
              If you have no testicles, testosterone replacement therapy (TRT) is DEFINITELY "medically necessary". Your body needs it, and if it doesn't have it bad things happen. If you have a urologist or endocrinologist that won't go to bat with your insurance company then I suggest you find another. Unfortunately there are people that just want extra testosterone, so it isn't all that uncommon for it be rejected at first until the medical need is proven. I personally had no issues getting it covered just like any other medication through insurance.
              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 - 9/18/15: 4xEP
              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!
              9/27/2018 all clears up to this date!

              Comment


              • #8
                Steven,
                Having one of each works for me (but I would say that), because there is still a slight difference in height between the two - which I had originally. Having two at once (as opposed to one real and one false) will make the pair look more natural (my opinion) because you/your partner/the locker room don't have anything directly to compare with.

                My missus reckons the pair make me look like Michelangelo's David - classical!!
                DZ

                Jan 2009: RHS (Seminoma) & RT
                Mar 2010: LHS (Embryonal Carcinoma)
                Sep 2010: Relapse & 3 x BEP
                Mar 2015: Five years "nut free"
                http://doublezeroami.blogspot.com

                Comment


                • #9
                  Biwi, I will make sure my Urologist and Primary care doctor work together to get my insurance company to pay for the testosterone. DoubleZero thank you for the inspiring words and laugh about Michelangelo's David!

                  Steve

                  Comment


                  • #10
                    Mate - like above thats a massive step, and first up is theta you really need to get on top of Testosterone replacement and have that well managed. Prosthetics will be fine x2 at once for me to. Sexual activity will return. Bottom line with well manged T am now fitter healthier and way better than before - be positive all will be good and you will get through the journey.
                    >>>>>>>>>
                    TC1: May 2001 / Right orchiectomy / seminoma stage 1 / Radiation
                    TC2: July 2008 / Left orchiectomy / seminoma stage 1 / X2 Prostheses / Reandron (long term Testosterone injections)

                    Comment


                    • #11
                      Kiwi, thank you so much for the encouraging words.

                      Comment


                      • #12
                        Hey you will just have one op. Unlike me who had TC 1 / IO then latter opted for a Vasectomy (and was charged full price) then had TC / IO # 2 with the upgrades of teh boys and that was really an un reversible Vasectomy - should have waited a bit!
                        >>>>>>>>>
                        TC1: May 2001 / Right orchiectomy / seminoma stage 1 / Radiation
                        TC2: July 2008 / Left orchiectomy / seminoma stage 1 / X2 Prostheses / Reandron (long term Testosterone injections)

                        Comment


                        • #13
                          Regarding TRT, pretty much any insurance will cover at least one type of injectable, Long term injectable T, & the topically applied T are more expensive & coverage varies by policy I had three different policies that covered topical gels at low copays, but my current policy does not, only covering short term injections.
                          Jan, 1975: Right I/O, followed by RPLND
                          Dec, 2009: Left I/O, followed by 3xBEP

                          Comment


                          • #14
                            Thanks for responding Davepet. It's proving to be difficult at the moment trying to get any valuable info from UnitedHealthcare. They want to know what kind of testosterone the doctor will be prescribing after my surgery to determine whether or not it will be covered. I explained I will having a bilateral orchiectomy. It doesn't matter. It's sad. It's all about the cost and not the patient's health when determining whether or not a particular medication is covered by them. Right now I'm getting a compounded creme from out of state sent to me at a relatively cheap cost but im hearing that injections are the way to go. I guess I have to wait for the surgeon to decide after the surgery. My primary care doctor said she would help me any way she can and prescribe it monthly once the surgeon gives his recommendation as to what kind he thinks is best. She will even teach me how to give myself the shots.

                            Comment


                            • #15
                              Here's the gist of it: there is absolutely NO consensus about which form of TRT is " best", so as far as most insurance is concerned, cheaper is "best" . That is almost always injections. Although I've had topical gels prescribed for 6 years, united healthcare decided to refuse those in favor of injections. I've had to learn how to do them myself, since my schedule is so volatile.Sometimes we just have to do what we have to do...

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

                              Comment

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