Sexual Healing
Before I jump into the main topic, I'd like to give a short update on the rest of my recovery. My urinary control has steadily improved. I'd say I'm 85% of where I was pre-surgery. I rarely wear pads anymore and when I do they are very thin. I only wear one if I'm going out to a place where I may be standing for a long time or a place where there could be bathroom lines. But that's about it. I still don't know entirely how much I have or exactly when I'm totally finished but, overall, I'm doing very well on that front. The recovery for this is supposed to be about 6 months and I'm about 4.5 months from surgery so I think that's good progress. I still do daily kegels but only 1 session for 30 minutes. On the PSA front, I've now had 3 PSA tests and they have all been zero so that's good news as that means that it's likely that I'm cancer free. I have another one in September of 2024 as we continue to monitor this.
While I am making very good progress on the urinary control front, the erectile dysfunction part is a longer journey. I think I'm doing ok but recovery from this can be at least 18 months and, as I stated before, I'm about 4.5 months from surgery. I continued taking Tadalafil (aka Cialis) post-surgery at 5mg per day. While this dose pre-surgery had noticeable results, it did nothing post-surgery. At my first follow-up appointment, my urologist suggested that I double my dose to 10mg per day and 3 times per week take 20mg and see if I make any progress, which I did not. I had another follow-up 2 months post surgery and explained the situation. I was then prescribed 20mg every day for a week. If I didn't see results I was to call back and we'd move to the next step. I didn't make any progress at that dosage either.
So the next step is another medication called Alprostadil. This was ordered from a compounding pharmacy who would mail me a kit. Like the Tadalafil, it's not covered by my insurance but, thankfully, it's not very expensive relative to many drug prices and I can pay for it with my Heathcare Savings Account (HSA). A vial which currently lasts about 6 weeks costs about $120 including shipping. It comes in powder form in a small vial.
Along with that comes a bottle of Bacteriostatic Water of which I put 5mg into the power solution via a syringe and shake the bottle to mix it up. At this point, the mixture needs to be refrigerated. When it's time to take a dose I load up some of the mixture in a syringe. This is a U100 syringe usually used for diabetics. It's a small needle, 31 gauge and about 5/16 inches long. The U100 refers to “units” which are .01cc so this can handle up to 1cc of liquid.
Here's the tricky part: the dosage is a bit of trial and error. There's no way to know up front how much I'll need but I really want to avoid over-dosing which can cause priapism which is an erection that won't go away on its own. You may have seen the advertisements for ED drugs that say “seek medical attention if you have an erection lasting more than 4 hours”, that's priapism and it's actually dangerous (see the article for details) so no pressure here. I had a nurse appointment before I started using it and she suggested starting with 10 units (.1cc) and going up until it worked properly. More on that later. I did my first dose in the office with the nurse at 10mg. This was probably going to not be enough but the goal here was to learn how to use it and see if I felt anything at all. I did and so I started using it a home.
I start by cleaning the top of the bottle with an alcohol pad. Then I load the syringe with the dose (or the guess of the dose). Next I prepare to inject the solution, (oh, did I mention where?) into the side of my penis. Ouch! The idea is to alternate sides and avoid a vein. So I pick an area an clean it off with an alcohol pad, insert the entire needle and inject the dose. After a brief shudder I can then start to try to get an erection. Like the pills the injection doesn't just create an erection. To get one requires normal sexual stimulation. The medication just allows the bloodflow to occur by relaxing the blood vessels. When I get a correct dose it takes a 5-15 minutes to get an erection going. The trick is how long it lasts. As I worked to find a good dose the longest I had was about 2.5 hours. That's about as long as I'd like as I'm not interested in pushing the 4 hour priapism window as that involves a trip to the emergency room.
I do this every 3 days or so. The goal is 2-3 times per week. I log the dosage and the results to help find the correct one and to have a record of what I've been taking in case that's needed later. My penis has a noticeable ache for about 4-6 hours after the injection. After that, the injection site is a bit sore to the touch for about another day at the most.
I can't say I look forward to it but it's a necessary part of rehabilitation. Post surgery if you don't get erections going soon, it's possible that you may lose the ability for life. I could understand why some older men opt to not do this part but I had this surgery at 53 years old and I'd like the chance to rehabilitate. Each man needs to decide that for himself. But this lead me a very important question: Will I need to do this for the rest of my life? That was the primary question at my 3 month follow-up appointment. By that time I had settled on 30-40 units (.3 – .4 cc) as my dose (even now it's a range). Would I build up a resistance and have to do more? The answer was encouraging. If all goes well, this isn't a permanent solution. The idea is to keep things working while my body is healing. If I heal up well, the dose should be able to be reduced over time and (hopefully) eliminated perhaps only using pills, maybe nothing at all. I still take 5mg of Tadalafil which is the highest dose I can while using Alprostadil. How long will this go on? While I can't say for sure, it could be a year or more. As I said 18 months to recover is normal on the erectile dysfunction side and I'm only 4.5 months into recovery. Recovery from prostate cancer is a journey. Some parts are easier than others.
Please note: This blog is based on one man's experience and is for educational and support purposes only. Nothing in this blog should be considered medical advise. Always consult a physician to properly evaluate your particular health issues.