NSFW WARNING: This is a frank discussion of sexuality. If it grosses you out or if you aren’t mature enough to handle it, stop reading now.
It has been a while since I made a post here. The main reason is that there was nothing to tell. As I said in a previous installment, I concluded most of the story that I originally intended to tell, with one exception, and as many of you will find, no news is good news. I’ve been returning to normal life while living from one PSA check to the next and praying daily that, God willing, my cancer won’t return. Clicking to open the test results that, for better or worse, now come quickly to email is a difficult thing to do, and I suspect that it always will be.
The one exception that I haven’t covered in previous installments is sex. For many of us, sex is an important part of our lives. When I was diagnosed, the prospect of never having sex again haunted me (and my wife as well). I’m going to tell you that there is good news: That’s not necessarily the case.
As always, I’m talking about my own experience. Your mileage may vary with your own situation, but the good news is that sexual function can return. It just takes time and physical therapy. Sexual recovery takes longer than recovering from incontinence, the other big side effect of prostatectomies. My doctor advised me that two years or longer is a realistic time frame to find a new normal.
I’m going to take time out here to note that I’m an introvert. I don’t usually talk about myself, and opening up about my sex life is definitely outside of my comfort zone. Nevertheless, I’m going to give what seems like TMI because I think it’s stuff that people want to know. I know I would have liked to know it going in. This month is two years from my surgery and we are also coming up on Valentine’s Day so it seems like a good time to tackle the topic.
Prior to being diagnosed, my wife and I had a good sex life. When we talked to the urologist immediately after being diagnosed, two of my questions were whether I would still experience sexual desire and whether I would be able to perform sexually. The answer to the first is yes, although the shock and depression that went along with cancer put a damper on my sex drive for quite a while. The answer to the second question is more complex, but here is a short layman’s answer. Without a prostate, the body won’t make semen, but depending on one’s particular case, orgasms and erections are still possible.
A lot of the outcome seems to depend on whether the surgeon has to cut the nerves around the penis. In my case, one side had to be cut, but one side could be saved. In some of the online prostate cancer support groups, I’ve seen people say that their doctor just cut all the nerves on the theory that the patient could use injections (more on that later) to obtain an erection.
I have two pieces of advice on that score. First, get a second opinion and see if saving the nerves is possible or advisable. Second, stay off the internet groups. They terrified me more than they helped.
After surgery, it took me a while to even start thinking about sex again. The week with the catheter was about as much of a turnoff as anything could be. After that, I had to work through a period of depression after finding that cancer cells were detected in a lymph node that the surgeon had removed. Even if I had been in the mood, the doctor advised against sexual activity for several weeks after surgery while my body healed.
I think it was about two months after surgery that the possibility of sex first seriously crossed my mind. On our anniversary, my father-in-law gave me one of his Viagra pills and I popped it.
I had never taken Viagra, but the image that I had in my head was that you take the pill, your appendage springs to attention, and the wife hops on and goes for a ride. That definitely wasn’t the case here. There was no discernible reaction at all. At that point, I started to realize that sexual recovery might take a while if it ever happened at all.
At an appointment a couple of months after that, we discussed physical therapy with a nurse practitioner. She and the doctor both thought that there was a good chance of recovering my sexual performance, but they also advised that it was going to take work.
The doctors told me that the nerve damage from the surgery could be repaired but that it helped to stimulate the nerves. To aid my recovery, I needed to get the blood flowing. If not, the nerves could become atrophied and never fully recover.
The docs advised a three-course plan of physical therapy. First, they prescribed a daily mini-dose (20 mg) of sildenafil, the generic form of Viagra. This daily pill was intended to stimulate blood flow to my nether regions. For sex, I just take a handful of the same pills. Well, no, not exactly. The instructions say to take 1-3 extra pills 1-2 hours before sex. That can be a problem if you’re used to spontaneous sex, but it was a while before I progressed enough for that to be an issue. I also learned later that sildenafil works best on an empty stomach.
A second recommendation was a penis pump. I blanched at this a bit. My initial reaction was to think of Austin Powers’ Swedish penis enlarger. Again, not exactly correct.
Take my advice and don’t ask for them as drug stores or medical supply companies (yes, I actually did). Instead, you can find them at adult novelty stores or, better yet, just order one from Amazon for about $30.
Additional advice on this topic is to look for a pump with a variety of settings. If it… umm… sucks too hard, it can be painful. (And I’ll note here that this isn’t a device that is sexually stimulating. It just makes the penis larger by differential pressure.) Further, most of the pumps are powered by a rechargeable battery. For simplicity, I’d look for one with a USB Type-C charger since that is the new standard. That makes replacing a lost or broken charger easy.
Finally, some come with an attachment that looks like “lips.” Since erections are the problem with prostate cancer patients, these won’t do you any good. Just look for one that has a circular seal to go around your member.
Nobody told me exactly what to do with the pump. I mean, what to do with it is pretty obvious but not the optimal usage strategy for physical therapy. Initially, I keyed in on the instructions for the pump that I bought that said not to use it more than 20 minutes per day and used it 20 minutes daily at one time. Later, I decided that shorter usage several times a day made more sense, and that’s what I settled into: A few minutes here and there a few times a day.
While the pump does make the penis look bigger, it won’t necessarily lead to an erection. One of the things I had to learn was that post-op girth and rigidity did not go hand in hand. In other words, the penis can grow but not be firm enough for penetration.
The third recommendation was to stimulate my penis the old-fashioned way. The doctors recommended what I’ll euphemistically call manual stimulation as well as trying to have sex with my wife. As they say, it takes practice.
But getting back on the sex habit wasn’t easy. That’s especially true in the early days and months.
I was able to have an orgasm a few months after surgery. It is a very strange experience to do so without becoming hard and without semen. The upside is that this makes cleaning up easier.
It took longer to have intercourse. For a long time, even with the sildenafil, erections were just a distant memory. I have to tell you that having the desire and not having the ability was a very frustrating experience for both me and my wife. In the interim, we were able to have some sexual activity even when I couldn’t get hard enough for penetration. I won’t go into those details, but you can guess.
Something that helped to bridge the gap was the penis injection. I can’t recall the name of the drug with certainty, but it may have been Trimix. My doctors recommended injections as a way to bypass my penis nerves to stimulate an erection. Injecting drugs into my penis was not on my bingo card, but it’s something that I ended up doing for a while. Surprisingly, it wasn’t as bad as it sounds.
The injection experience started by ordering the medicine and syringes. The needles were tiny, the same sort that diabetics use. The sensation of the injection is nothing more than a pinprick.
Once I got the shipment, the nurse practitioner, a woman by the way, trained me on the procedure via a virtual visit. And yes, the training did include me injecting my penis live on camera. It was awkward, to say the least, but not especially painful. The injection is into the side of the penis, by the way, and not the tip, which is something I was thankful for.
The injections weren’t the ultimate solution, but they did work. And about seven months after surgery, thanks to the shots, we were able to have intercourse for the first time. That was a major milestone.
Having said that, there are some caveats and cautions to using the injections. First, they were a bit expensive, and they weren’t covered by my insurance. Second, they don’t last indefinitely. Keep the meds refrigerated, but once they are opened they lose potency. Use them or lose them. Physiologically, it takes some trial and error to get the dosage right. If you don’t get enough, it won’t work, and even when it did, it often seemed that the erection would come and go rather than staying stiff.
Finally, if you hit a vein when you are injecting yourself, you can get a hematoma. This is a ruptured blood vessel that causes blood to pool under the skin. It looks ugly, a dark, bruise-colored lump on the side of your penis, but it is rarely dangerous and usually goes away on its own. I did experience this a couple of times.
Thankfully, things continued to improve. My doctors put a new arrow in my quiver by giving me a prescription for tadalafil. You may know it better by the name, Cialis. Cialis works better than Viagra for some people and doesn’t have to be taken on an empty stomach. I maintain both prescriptions but I lean towards tadalafil for nights that I expect (or hope) to get romantic.
About 10 months after the surgery, we were able to have spontaneous sex with no chemical aids. This is still not normal, but it is at least possible. After two years, surprise boners are still a rarity, but they do happen.
There are other options as well. A friend and fellow prostate cancer survivor recently had penile implant surgery. I have not asked whether he gives the operation a penis up or down.
I’ll add that sex after a prostatectomy is still good, but to me, it doesn’t feel quite like before. It may be that my nerves are still healing or it may be psychological, but it feels different somehow. That’s probably to be expected after major surgery involving sensitive and finely-tuned body parts.
One additional possible complication is Peyronie disease in which scar tissue forms under the skin of the penis. This scar tissue can cause curved and, in some cases, painful erections.
I have noticed that my post-op erections do have a slight bend to the right. This isn’t pronounced and mine aren’t painful. It can be perceptable to me, but my wife says that she hasn’t noticed it. On a follow-up doctor visit, I brought this up and was told that there are treatments for the condition, but that if it doesn’t bother me, it’s better to just live with it than go through the hassle of treatment.
At the end of the day, I think that there are some good strategies to help improve your post-op sex life. First, don’t be shy about taking the pills. If you think that they’ll be needed, take them early. A pill isn’t wasted even if there’s no sex later because you still get the increased blood flow.
Second, don’t skip the foreplay. Foreplay helps give the penis time to get firm, but it also lubricates your partner. The wetness aids in penetration and is especially helpful if you’re having a hard time getting a firm erection.
Third, be flexible. I don’t mean kama sutra flexible, but rather be willing to deviate from your plan or habit. If the erection shows up, it may not last. Take advantage of it. Similarly, if it just isn’t happening, shift to an activity that is still pleasurable but that does not require penetration.
Sex is an important part of life and marriage. Prostate cancer doesn’t have to mean that your sex life is over, but it won’t necessarily be the same. Spontaneity suffers but that doesn’t mean that you can’t have pleasurable, meaningful sex.
Even though I haven’t been writing, I have noticed that a lot of people have followed the blog over the past few months. I’d like to welcome you all and offer my prayers and best wishes for each of you. You got this!
Please keep in mind that I am not a medical professional and this blog does not provide individualized medical advice. If you think you are sick, you should seek treatment from a real doctor.
Links:
Penile injections
https://www.ucsfhealth.org/education/patient-guide-to-penile-injections
Trimix injections
https://healthcare.utah.edu/mens-health/conditions/erectile-dysfunction/trimix-injection
Hematoma
https://my.clevelandclinic.org/health/diseases/hematoma
Peyronies Disease
https://www.mayoclinic.org/diseases-conditions/peyronies-disease/symptoms-causes/syc-20353468
Penile implants
https://www.mayoclinic.org/tests-procedures/penile-implants/about/pac-20384916
Previous Installments:
1 - The Diagnosis
3- Easter Special - An Apology to Apostle Thomas
4- My Treatment
6-Night is the Darkest Time - The Mental Battle of Cancer
7-How To Be Prepared For A Health Crisis
8-Tim Keller: Cancer and Christianity
11-When Is A Cancer Not A Cancer?
12-Comedians Not In Cars Getting Cancer
Please keep in mind that I am not a medical professional and this blog does not provide individualized medical advice. If you think you are sick, you should seek treatment from a real doctor.
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