Peculiar Pain Following 2nd Orchiectomy

[pstrange]

Hey everyone:

First off - I want to say that although becoming a 2X Warrior is no enviable milestone, I am so very glad that I found this forum. Your words of wisdom, comfort, and knowledge have been paramount in helping me and my fiancee get through this difficult time. I've been reading the forum frequently and the only reason I haven't posted earlier is that most of my issues, concerns, etc. have already been covered by other members. This is a testament to the value of what you are doing here. However, I was unable to find a specific answer to the current problem I'm having, so here I am. A friend in need is a friend indeed, as they say.

A little backstory - In 2011, following a right orchiectomy I was diagnosed with stage I seminoma confined to my right testicle. Following the surgery, I entered into surveillance and things were going well until several weeks ago. My doctor suspected something amiss in my remaining testicle and an ultrasound confirmed that there was a mass, albiet a small one. Considering my history and the certainty of the ultrasound report, it was agreed by all my doctors that I should have the left testicle removed as well. Reluctantly, I finally accepted that having a left orchiectomy was the best and healthiest option. So, last Monday, I underwent a radical left orchiectomy and had two prostheses inserted during the procedure. I received a shot of testosterone and will return to the urologist, oncologist and endocrinologist at the end of this week for post-op checkup, treatment discussions, and to start TRT.

The silver lining in all this is that while the mass was found to be cancerous, it is again stage 1 seminoma. Plus, now that I wil be on testosterone, I will hopefully start feeling better than I have in a very long time (I've suffered from low T levels since the first orchiectomy and am no stranger to the debilitating affects that go along with it).

The reason I come to you now is that I am feeling a sharp, intense pain in the upper left-side of the scrotum, at the base of my penis, that is amplified when I go to the bathroom, sneeze, move my penis to the left, or have an erection. To be blunt, the pain is so intense that nocturnal erections wake me up at night and I am forced to stand up and take a walk around the house to wait until it passes. Nothing. Fun. About. That.

I know that nerves get spliced during such invasive surgery and that they do grow back, but obviously I'm growing worried that this may be abnormal, and at the very worst, permanent. The last thing I need when I finally get my testosterone back on track and regain the ability to have a healthy sex life is pain every time I get an erection.

Of course I plan on discussing all these things with my doctors at the end of the week, but if any of you have had similar issues or have heard of anything like this, your comments are all too welcome.

Thanks again for reading. Hope to hear from someone soon.

Patrick

[roybatty]

Sorry to hear this. I am 2x, both stage 1. Been on TRT a long time.

Other than some discomfort with the first implant, or the stitches, I have never had any issues associated with pain anywhere else, penis or erection issues.

I hope your doctor can provide more information and run more tests.

[pstrange]

Thanks Roybatty -

Yeah, that's what I'm concerned about. I didn't have any of these types of sensations or pain following the first orchiectomy so I know that at least this isn't always the case. Hopefully I can get some answers from the urologist at the end of this week. I've also been unable to find anything online that speaks to the type of issue I'm having.

[Davepet]

You have joined a very exclusive club, Patrick, somehow, saying "welcome" does not feel right, though.

You might want to call the doc early & see what he says, might be something he can do that would help. I've never heard of anyone with pain on erections before, so it's not common.

Keep us posted on your progress,

Dave

[pstrange]

Hey guys -

Just a little update - met with the urologist today and told him all about the pain I was having. He checked me out and told me that although the pain I've been experiencing is uncommon (I believe he said about 4 of every 100 of his patients experience the same symptoms) that it will subside with time. Here's to hoping "time" means days/weeks and not months.

In other news, my oncologist has put me back on 6-week surveillance, so it's pretty much like I'm starting over. While I'm somewhat relived that we opted for surveillance, the idea of having to start over is fairly demoralizing. But, I'm hoping that once my testosterone levels get in check all this will become routine once again. It's just like being knocked down the hill once you've made it halfway up. Sisyphus anyone?

I do have one other question - the endocrinologist mentioned that he was somewhat concerned that using the gel for TRT may be insufficient for my situation, citing that since I was producing absolutely no testosterone on my own, that the gel may not be able to give me enough T to get back to normal levels. Since you guys are in the same boat as me, I was wondering what your experiences have been with the gels (if you have used them) and whether they worked for you or if you had to use other methods of TRT to regain normal levels.

Any insight would appreciated. And thanks for the welcome, Dave. Sure, it's a tough club to be in, but I'm sure glad I found you guys.

Patrick

[Davepet]

I do have one other question - the endocrinologist mentioned that he was somewhat concerned that using the gel for TRT may be insufficient for my situation, citing that since I was producing absolutely no testosterone on my own, that the gel may not be able to give me enough T to get back to normal levels.

Your endo isn't well informed, apparently. After my second I/O, I went two weeks without TRT (because my uro wanted to check with the onc about TRT interfering with chemo,m as if guys with natural T levels don't get chemo every day....) I had a number of the classic symptoms, including hot flashes starting a few days post op.

Once I started, I felt better within days. My levels have tested within the normal range ever since, although they do seem to vary quite a bit, possibly due to the time of day I get in for the test.

Dave

[pstrange]

Once I started, I felt better within days. My levels have tested within the normal range ever since, although they do seem to vary quite a bit, possibly due to the time of day I get in for the test.

Dave

That's comforting, Dave. Thanks for the insight. I'm hopeful that once I get the prescription on Monday, I can finally start to get back on track. I'll follow up in several weeks to let you guys know how the TRT is working.

Thanks again for all the help.

P

[roybatty]

I am glad to heat that the doc thinks your pain is not serious and should go away on its own. No pain killers.

I am starting observation as well. I had radiation the first time long ago.


I tired gels and patches, and only got into the 170's (way too low). Some guys simply don't absorb well through the skin and I am one. Was fine for me - because I worried about wife and kids contact. Weekly T Shots work fine for me and I am used to them. My standard advice to any TRT is to get your free testosterone and E2 levels checked every time you get total T measured.

[Jayh]

Trt

Dear Patrick,

Sorry to have to welcome you to our elite club.
I had my second orchietomy six weeks ago. I had my first bout of TC in 1993. I now have one prosthetic and have had some discomfort and aching with it but it seems to be settling down now.

On the subject of TRT, I began taking the gel (Testogel. I'm in the UK) eight weeks ago (before the orchietomy). 'Im taking the maximum 10mg a day (two sachets) and I feel absolutely great. My T level was desperately low eight weeks ago and I felt awful for a few days but the gel has done the trick and my level is normal. As a bonus, my sex drive is ow WAY better than before!! I will probably switch to a 12-week T injection (Nebido) from September.

Despite the trauma of a second bout of TC, the surgery, the chemo and the TRT, my quality of life is probably better than it was before.

You'll be fine!! Onwards and upwards!

Kind regards
Jason

[pstrange]

Hey guys -

Thanks for your replies.

Over the weekend I have noticed that my pain has subsided somewhat, which is extremely welcome. Hopefully the trend will continue and I'll be able to sleep and move around much better very soon.

As far as the TRT goes, I'm anxious to get started and can't wait to get my libido back to where it was pre-cancer. It's been a very difficult thing for my fiancee and me, as I'm sure you can understand and expect, and at least now I don't have to continue trying to salvage the function of my remaining testicle through Clomid, Anastrozole, etc. to no avail and never feeling quite right as a result (my remaining testicle following my first TC was hypogonadal and atrophic). I'm still unsure what dose the endo will prescribe me tomorrow, but I do know it's a gel.

Thanks again for all the advice and words of wisdom. I'll check back later in the week to give an update.

Patrik