So many concerns.......

[cgdirector]

About 2.5 years ago I underwent a bladder scope at my urologist. It was VERY painful and I had resultant urethral inflammation and penile swelling post-procedure. Approximately 2 months later, I noticed hard “lumps” in a couple of spots and it appeared that there was a new upwards bend of about 30 degrees at the distal 1/3 of the penis along with a new curve to the left originating from the middle. I saw my urologist a month later and he stated that it appeared that I had developed Peyronie’s Disease. The MD commented that there was nothing to do at that time but “wait and see” if it progressed further. He asked if I could follow-up in a year or so. Well 1 year ended up being 16 months as the practice was bought out and I was lost in the shuffle and unable to get an appointment for 4 months past the 1 year follow-up date. By that time, the upward bend had progressed to 60 degrees and the left bend about 30 degrees. ED was a major factor by that time as well.

In November 2019, I began a series of Xiaflex injections in the hopes of breaking up the plaque. The treatment is a total of 4 series of injections. You get one on one day and receive a second within 48 hours. Then you wait 4-6 weeks and repeat the same thing, wait 4-6 weeks and repeat the same thing and so on. The 1st series (although VERY painful) went without incident aside from a couple weeks of swelling/bruising afterwards. I went back for my 2nd series in December and received my 1st injection. I took of the compressive dressing after 3 hours per their instructions and 1 hour later I was in the floor with pain, almost unable to walk. The saw me in the office stat that day and it appears that an artery had been hit with the injection. I had developed what could be described as a massive hematoma in the entire penis and subsequently developed compartment syndrome. My penis was engorged with blood- several times it’s normal size. The urologist had to relieve the pressure immediately so he drew 5 large syringes of blood from my penis which was the most intense pain I could ever imagine. He had to approach it from the front using 18 gauge needles. The removal of the blood relieved some of the pain (I went from 10/10 pain to 7/10 pain). It took almost 2 months for the swelling to go down as the swelling in the penis was not edema, but rather blood. About 1 month after the incident, the remaining blood had congealed in the penis and I had to express it out a little at a time over the next few weeks via a couple of the holes created by the syringe needle that had not closed. The prolonged would healing response over several weeks caused MORE scar tissue to form. 6 months later, my ED was almost total. It was decided last September that the best way forward to resolve my issue was an implant.

I was implanted with the Coloplast Titan on 11/23/20. Infrapubic approach. There was extensive modeling performed by the surgeon intra-operatively. The surgeon inflated the IPP to 70%. I took 2 weeks off from work. Had Moderate+ pain the 1st week and Moderate pain week 2. Had Moderate+ to severe swelling of the scrotum and penis. It was significant enough that there was concern that I would not be able to void and a new indwelling catheter was inserted before I was allowed to leave the hospital. That remained in for 3 days and the compressive dressing was left on for 3 days. I was a very compliant with regards to bedrest, elevation, cold packs, etc. Followed up with the surgeon at 10 days post-op and he was impressed at the improvement with regards to swelling and bruising. Went back to work Day 14 post-op. Was still Moderately painful and I was unable to sit erect at 90 degrees or put pressure on my perineum until 18 days post-op. Major sharp stabbing pains in the groin on both sides every time I stood up. Swelling reduced notably by Day 17-18 and could easily palpate the pump. Pain is now occasional and averages Mild-Mild+.

Today is post-op Day 24. I have concerns regarding very painful palpable “bumps” just proximal to the glans (on the sides). They are generally painful even without without touching them. I've taken to lightly wrapping coban from the base of the glans downwards to decrease the discomfort. I’m sure it is the cylinders. I can palpate the very end tips going axially through the glans but it almost feels like the cylinders may be buckling approximately 1 cm from the distal end tips. These bumps were not present the 1st couple of weeks when there was a lot more swelling. The MD had deflated me to approximately 30% (How do you judge percentages if you haven’t inflated fully and deflated fully?).

Yet another concern is a natural 45 degree deviation to the left at the base of the penis. The surgeon stated that this was due to the Peyronie’s and that he was not able to correct it via modeling. However, prior to surgery I did have a deviation to the left but it was midshaft and about 30 degrees. This is a “new” deviation. When I orient the penis towards my stomach, it’s painful and feels like it is stiff because of the cylinders, not the Peyronie’s. Can the cylinders be placed in a manner such that it causes the lateral deviation at the base?

I am concerned that these “bumps” are going to cause continued pain and possible erosion. Do I need to be concerned this early on? Could I possibly be able to feel these bumps on the sides because there is slight residual upwards curvature from the Peyronie’s and it’s buckling the mostly deflated cylinders? I also have dense numbness of the right half of the penis (due to the modeling per the MD) and hypersensitivity in the parts where sensation is intact.

I know it’s a lot of info. I sent a message to the surgeon regarding these concerns via the provider’s portal (along with pictures) 2 days ago but haven’t heard anything back yet. Any feedback would be most appreciated…

[Old Guy]

At day 24 I was still on the couch and had severe swelling/bruising and 9/10 pain. Implanted 11-8-2019 and first day I sat in a chair was Christmas. Not for long either.
Bumps might be blood clots which should dissolve on their own, but your doc should see them. If you feel like your penis is sunburned my guess is the anti-biotic impregnated on the Coloplast. I had that for 3+ months. Relief for me was hot baths, a kids sock over my penis, and Aspercream. Smear a small dab of Aspercream on your shaft and it really reduces all pain/soreness/burning. Just make sure you incision is well healed before using that, and wash it off before sex.
Hang in there, it does get better.