7 months post-op and very frustrated with pain levels and sexual side-effects

As with many of you, I got the standard info from my surgeon about the possible side-effects as a result of urethroplasty surgery. I had an anastomosis (end to end) done for a 6 CM stricture in the proximal urethra close to the prostate. When he told me that he did the end to end repair, I was shocked because that seemed too long based upon everything I had read and that should have required a buccal graft. He assured me that there was plenty of “length” there, but admitted that he had to excise part of the “bulb” of the penis during the reconnection process.

The surgery was on December 7th. Within a week I developed severe bladder spasms as my body apparently didn’t like the foley that I had to wear for three weeks and my scrotum looked like a giant purple eggplant. I was placed on both anti-spams meds plus pain-killers as I was experiencing some excruciating pain and discomfort. This lasted for two weeks. They finally decided to take a urine sample and then discovered that I had a UTI caused by pseudomonas aeriginosa, a bacteria that apparently got into my bladder during the actual surgery because it normally does not live there. Now I was going in every day for an antibiotic bladder wash of gentamycin to try to control the bacteria until I could get the catheter out on the 29th.

On Friday, December 29, (22 days post op) I went in for a VCUG. The radiologist was fantastic. She walked me through the process and removed the catheter after filling me with contrast solution in a quick and pain-free manner. Once the catheter was removed, she stood the table up, handed me a plastic urinal and signaled for me to void. The images came out well, and for the first time in 3 weeks, I was catheter and pain-free in my urinary tract, although things were still pretty swollen and painful at the incision point and in my scrotum.

2 hours later at my surgeons office, I thought I would have a mental breakdown. The VCUG revealed a very slight leak at the repair site and my surgeon recommended that the foley go back in for at least a week.

So now, after only two hours without a catheter and the spasm/pain associated with it, I had to have it put back in? Seeing my obvious distress, and due to the fact that I still had an active, nasty bacteria in my bladder, he personally reinstalled a new foley and put me in the hospital for 5 days so I could get IV antibiotics and 24/7 pain control. That was very physically and emotionally draining as I had to be in there during the holidays and during my wedding anniversary. I was really regretting having this surgery. Between the pain from the incision site, and the constant attempts by my bladder to expel the foley catheter, I was one miserable individual. But I’ll give the doc credit. Upon my request, he left orders with the nursing staff that I was not to be bothered for routine vitals/blood draws if I were asleep. That was my condition for agreeing to be put in the hospital. That was the bright spot in that visit. When they found me awake, they would do all “routine” work at the same time, honoring the request to allow me to sleep. They kept me drugged up, and even gave me belladonna suppositories to help stop/quell the spasms I was having due to the foley. It sucked being there, but the nursing staff was amazing.

On January 5th, I had another VCUG. In contrast to the first one just a week prior, this one was excruciating and painful, as well as humiliating. I experienced severe burning during the time my bladder was being filled with contrast, he then didn’t warn me to tell me he was pulling the foley out, thus I was still somewhat “clamped down” from the burning that was going on. He also did it excruciatingly slow, making it feel like shards of glass were traveling down my urethra. After it was out, I curled into a fetal position with my urehtra on fire and asked him to give me a few minutes to calm down.

When I signaled I was ready, I expected him to rotate the table into a vertical position, just like the previous week, but he did not. Instead, he expected me to urinate while flat on my back and without a urinal!!! Not only was that humiliating, but it was disgusting and unsanitary. There was no pad on the table, I had no urinal, and was only wearing a hospital gown. When I objected because I would soak my gown, my 4 inch incision and the table, he simply said “we have more gowns.”

Humiliated by this request, I refused to urinate all over myself. He finally relented and agreed to stand the table up, but i still had to ask for a plastic urinal. Of course, with things still being numb, my urethra on fire, my hands shaking from both pain and anger (and embarrassment) it took me a few tries to get hooked up, after which I was finally able to void. Pics were taken and I was finally allowed to step down.

Being somewhat weak in the knees, and still quasi-doubled over from the painful foley pull, I sat in a chair in the xray room for about 10 minutes to gather myself before I felt well enough to walk back to the dressing room. At least three times, the radiologist kept getting in my face, stating “I don’t understand why you are having so much pain”. I finally advised him not to repeat that a 4th time. I could not explain the “why”, just that I was in extreme pain and I wanted him to leave me alone.

I was finally mobile, was able to dress and then I drove myself to my surgeon. Thankfully, the images showed that the leak had healed and I didn’t have to wear the foley any longer. A week later, the urine test revealed that the bacteria had been defeated and I could now concentrate on healing and getting back to “normal”.

Flash forward 7 month. I am still miserable and quite pessimistic as some of my biggest fears are being realized. Despite having no sexual dysfunction prior to the surgery even with a stricture, I am now having a problem getting and keeping an erection long enough to make love to my wife. The doc prescribed viagra which solved that issue, but now I’m finding that I can never seem to get to the “trigger” point to reach an orgasm and ejaculate. When I can finally get to that point, it is anti-climatic. As a virile, vigorous and potent father of five, this aspect of my relationship with my wife has never been an issue until now. Now, I can’t even get excited without a little blue pill and even then, can’t finish with a bang without significant manual stimulation. I’m feeling very inadequate and useless in that area right now, and while my wife does not admit it, she misses that part of our relationship.

I had a DVIU a year prior to the urethroplasty and have always had very forceful ejaculations. They were even better after the DVIU, but some scar tissue formed and created another stricture, but not as severe as the first one. Unfortunately, after this more invasive repair, when I do eventually reach an orgasm, the ejaculation is barely a dribble and nothing to write home about. On top of it all, I am also experiencing post-void dribble, severe pain in two specific spots in my scrotum and on one side of the shaft of my penis, numbness in the most-important places on my member and pain during intercourse. There is a tightness between my scrotum and anus if I pull my erection toward my stomach. I had none of these issues prior to my second surgery, and now everything that could have gone wrong seems to be going wrong.

I’m a wreak, and quite depressed over this whole thing, regretting the day I agreed to this surgery.

I spoke with my doctor today. The best he had for me was that it would take more “time” for all the nerves to regenerate down there and for the sensitivity to return, but he is quite puzzled by my inability to reach orgasm. I am desperate to find answers somewhere out there before my entire sex life is ruined.

This has been my biggest fear from the beginning. That I would be able to piss like a race horse, but that things that were not broken before would end up broken. That is exactly where things stand at this point and now the most intimate, sensual part of any marriage is just an exercise in frustration and sorrow. I’m feeling very inadequate and useless in this area now, and am now on anti-depressants to cope

The surgeon is now referring me for pelvic floor therapy. He believes that scar tissue may be causing an issue and that some of the muscles involved in proper sexual functioning need to be retrained and or toned. And of course, he still keeps saying that it may take another 6-18 months for me to regain full functionality.

6-18 months? I will lose my mind by that time. My wife of 34 years doesn’t look a day over 40 and not being able to be with her in that way is giving my self-esteem a punch in the gut. Had I known that the road to recovery would be fraught with this many obstacles, I would never have opted for this surgery until it got to the point that I could not urinate. I’m really regretting letting him do the surgery, and questioning the use of an end-to-end repair for such a long stricture. He admitted that he had to take part of the bulbospogiosis muscle/tissue, which in my mind, since it plays such a critical role in the expulsion of semen, that this may be the cause for the lack of power when I can finally achieve an orgasm.

I’m really desperate for some encouragement here, which is why I have been so transparent and blunt with my descriptions. Those of you who are a year or more out from surgery…does it ever get better, or is this just the new paradigm and the prognosis given me from the get-go just a fantasy expectation to convince me to have the surgery? I’m feeling pretty deceived, used and robbed of a part of my life that was perfectly fine prior to my surgery.

Please give me some encouragement. Don’t lie to me….I can handle the truth, but still feel somewhat robbed by the lack of progress in my recovery. I’m taking the first vacation I’ve had in 9 years later this summer with my wife, and the prospect of still not being able to perform is terrifying me at this point.

Sorry for the long entry…there is more that I could add to this sordid tale, but this is enough trauma for anyone to have to read at this point. Any hope out there? I’m listening.

TheProphet