I make no apologies for what is to follow for obvious reasons which will become apparent. No filters, just talking about what needs to be talked about.

Today marks my 15th day following my Prostrate Surgery…more specifically…I had my prostrate removed (Radical Prostatectomy). I have had lots of thoughts and emotions and I thought putting them into words might have value for me and for others in a similar situation.

My journey begins several years ago as my PSA levels began to rise with my annual physical. My general practitioner doctor sent me to a Urologist who continued to monitor my PSA leves

There seemed to be little concern about the rising PSA because it had been gradual and because of my age (65 years). The Urologist had one concern because there was one spike in my readings. He asked if I had been sexual the day prior to the PSA blood test. Evidently this can account for the spike in the level. I told him no one had told me to be abstinent prior to the blood work and that as dull as my life is, I have no idea if I had sex with my wife (or masturbated) 6 months ago.

There are two themes to this posting. In my opinion there is a huge lack of communication with regards to anything pertaining to sex or anything pertaining to our sex organs. Really…this is 2022 and we still can’t talk about this stuff? I hear commercials on TV for vaginal cream, tampons, what toilet paper is going to do for me, Viagra and/or erectile dysfunction, but I still can’t get good information about what I might expect sexually after a Radical Prostatectomy or any other treatment relating to the prostate? Not even from my doctor?s

The second theme would be the anger that men feel based on the fact that they have to deal with the after effects of their surgery, in many cases, with no prior knowledge to what was coming and no one to talk to about issues after surgery. I will talk about this anger later in this posting.

My advice to anyone finding themselves in this position is to educate yourself…preferably with information from doctors, but until the doctors get over their embarrassment or shyness or arrogance then you need to get the information you need available to you on the web, from books or someone who has been through it. I found books lacking in the information I wanted most and most men won’t talk openly about their experiences with this cancer. An example of this issue is below.

I was attending a funeral of a good friend who had died of prostate cancer. He refused to have surgery and opted for an alternative treatment. That decision ultimately cost him his life. I was visiting with an old friend at the funeral and I commented that I would have had the surgery. He confided in me that HE had just had the surgery and the only side effect was that he had to wear a pad in case he leaked a little. He then told me that there were two people in the world that know about his surgery…his wife and me. I was grateful for the information and vowed I would not be the guy who never talked about my prostate cancer or was embarrassed to talk about it

The most helpful information I found was in the comment section of a medical website pertaining to Prostate Cancer surgery. Again…not the posted information from the doctor(s), but from the comment section at the bottom of the page

It should be noted that Prostrate Cancer is hereditary, so if you have someone in your immediate family with Prostate Cancer you should take that into account. If in fact it runs in your family, your male offspring should consider monitoring their PSA levels earlier than the average male. So, if you are too embarrassed to let someone know about your prostate cancer, you may be endangering their life.

My urologist offered the option of a Biopsy which I passed on due to the fact that my PSA levels had been rising slowly and consistently (with the one exception).

This was also based on the fact that everything I had been told about Prostrate Cancer indicated that it is slow growing and in many cases can just be monitored.

It was at this point that my oldest brother developed Non Hodgkin’s Lymphoma, which was simply noted on my part, aside from supporting him in his battle with cancer.

In one of my conversations with my second brother discussing our brother’s cancer he informed me that he too, had cancer. He had Prostate Cancer and because it was aggressive, he was going to have his Prostrate removed. He advised me to inform my doctors that two of my brothers had cancer. This of course increased my chances of having cancer as well.

It was at this point that I decided that the biopsy not only made sense, but was necessary.

I tried to schedule the biopsy with my urologist and was told they were out two months. This was a huge health organization and they had no other options for me other than waiting two months. I asked about other locations within the state I live in, but to no avail. I felt that this was unacceptable, because I now had information indicating that I might have cancer and my Doctor and clinic felt asking me to wait over two months was totally acceptable. It was not acceptable to me!

I really wanted some answers, prior to leaving the country for a 30 day vacation and as a result I called around for other options. I found an Urologist that could do the biopsy in two weeks.

I called my first urologist and talked to the receptionist to cancel the appointment that was over two months out. She was annoyed that I had chosen to do the biopsy elsewhere and told me that maybe I just wanted to have everything done with the new doctor and clinic. This seemed like good advice. I was angry with her attitude and a two month wait and so I followed her advice and changed Doctors. Again, I see this as arrogance on the part of the medical community. This receptionist had no concern for me but only for herself and her employer.

With my new urologist, I had both an MRI and the biopsy. I got the results back indicating that I did in fact have Prostrate Cancer.

My doctor discussed my Gleason score with me. The cancer is rated two different ways and each gets a score. These two scores are then added together to give the patient an overall score. This is then used to decide the next plan of action. My Gleason Score was low enough that I decided to wait and continue to monitor my PSA

My next PSA (six months later) showed another elevated PSA level. My surgeon asked if I wanted to do another biopsy. I wanted to avoid another biopsy if possible for the following reasons

The biopsy itself is uncomfortable, like many medical procedures. I wanted to avoid this discomfort because I felt I was very likely going to move forward with the Prostrate Surgery (based in large part on my brother’s aggressive Prostrate Cancer).

I opted to pass on the second biopsy but did have a second MRI. The MRI showed that the cancer had spread to the other side of the Prostrate in six months.

It was at this point that I decided (with my wife) to have my Prostrate removed. I chose to wait two months to enjoy some of our summer before being laid up.

My brother with prostate cancer sent me a book about prostate cancer which provided some good information, but nothing about what was on my mind

I am a guy and I think a fairly typical male. Sex and anything relating to sex is important to me. I wanted to know what I could expect relating to sex after the surgery.

I believe I had an excellent surgeon, but got little to no information about what I could expect sexually after surgery. I would not describe him as a good doctor.

I have an auto-immune disease and have gotten very little information from that doctor as well. What is consistent with both doctors is their frustration with me looking on the web for additional information. If you are a Doctor reading this…and you want your patients to avoid the web for medical information than you will have to start providing your patients with the information they need and maybe information that they don’t need but want.

It should be noted…there is a lot of bad information or misinformation on the web. I would recommend staying on the medical sites when you can. Getting the same information from more than one site gives whatever you are reading some creditability as well.

I was willing to have my prostate removed, even if it meant I would never be able to have an erection or climax again.

I knew that losing the ability to have an erection was a possibility prior to surgery…and that was about the extent of what I had been told. Below is some of what I have learned.

Depending on how advanced the cancer is and the skill of the surgeon, you may or may not maintain the ability to have an erection. The sources I have found indicate that it may take up to a year for erections to return. I have also read it might take much longer…maybe 2 years.

The following is information I had to dig hard to find. I was fortunate enough to have a 80 year old friend (who had his prostate removed many year prior) call me to discuss what I could expect moving forward. He asked me to ask any and all questions (including sex) and that was extremely helpful. Below is information I gathered from him and the web, along with some of what I experienced

• You will most likely experience some urine leakage immediately following surgery. My doctor did tell me about this and recommended I buy some pads to collect any leakage. I did not experience much, but found the pads did give me some comfort/assurance that I was not going to embarrass myself.

• As we talk about urine, it should be noted that urine is sterile. Who knew? Go online and check it out. This doesn’t mean that you don’t need to wash your hands etc., but it does mean that it is not as big a deal as your mother told you when you were little. Bacteria do grow at the end of the penis, so hygiene is still important.

• After 3.5 months I still do not have the ability to have an erection. I have seen my penis grow slightly larger with stimulation both now and even immediately after surgery, but no erection

• You can experience a climax after having you prostrate removed, and even without an erection, but it will be different.

• After you have your prostrate removed you will no longer ejaculate. This is referred to as a dry orgasm. It evidently bothers some patients and evidently some of their wife’s as well. On a positive note, sex is not as messy without the ejaculate. Oral sex may be more pleasant/acceptable because of this as well.

• There are some web sites where it is recommended that you begin to masturbate as soon as it is comfortable after surgery. The idea is that this is a muscle and needs to be maintained and encouraged and masturbation increases blood flow. My doctor was annoyed and told me there are no medical studies that indicate that masturbation helps. I see no harm in the process and so I have “exercised” on a regular basis since surgery

• It is more difficult to masturbate with no erection, but it can be done. Some of the sites I was on talk about using a vibrator, but that did little for me. The sites also talk about climax for a male after surgery is more in the head than in the penis…I have found that to be true. Think about the fact that this is what woman experience and know that your sex life can still be good, but different.

• I have found that pulling down on my penis repeatedly allows me to masturbate without an erection. Think of milking a cow…sorry. Oral sex allows me to climax as well, but both take time…again think of how long it takes a woman to climax.

• The first time I masturbated I did ejaculate. I did not ejaculate semen or come but urine. Imagine my surprise! This was no small amount of urine either. What I learned is that this is typical…it is called Climacturia. This is a big deal if you are not prepared for it…a smaller deal if you are. My wife suffers from her own medical issues and as a result we have gone without intercourse for a number of years. We have still been sexual and that means we frequently have oral sex. Imaging if I had ejaculated urine into her mouth…that might have changed our relationship as it relates to sex forever. This is what motivated me to write this information down and what made me most angry regarding the lack of information given to me by my doctor.

• The good news is that you can empty your bladder prior to sex and experience little or no urine on climax, but the only way (in my mind) to know how successful you will be is to masturbate (practice) until you know what works.

• I have found that my urine flow is much faster than prior to surgery and I have read that this is common.

• I can urinate and walk out of the bathroom and feel like I still need to urinate again. If I try right away, I can usually get some more urine to flow. I have been told that doing that too many times can cause a urinary track infection.

• Sometimes it seems like I have to urinate all the time. Sometimes I go all day or night without having to go. I am guessing this has something to do with my body healing.

• I have found that standing up allows me to empty my bladder more fully than sitting on the toilet.

• I have found that if I shower after going to the bathroom (and prior to sex) I can sometimes get a little more urine out in the shower. I can climax now with no urine to deal with. One site recommended waiting 10 minutes to climax.

• The other thing that can help this issue is physical therapy and Kegal exercises. My doctor was sharp enough to prescribe this for me. My brother’s doctor was not.

• Kegal exercises can help with the urine leakage that occurs for some men following surgery. It can also help with urine leakage on climax.

• I read one post where the man was so angry because as he urinated, the urine ran down onto his testacies. I really think that as guys we need to put this in perspective…we are alive and moving forward with our lives…the rest is the small stuff. Urine on your testicles can be dealt with; women deal with this every time they urinate. We need to get use to dealing with urine…it is no big deal...unless we make it so. Think about the first time you changed a diaper and compare that to the last time you changed a diaper…It is no big deal once we accept what needs to be done. Having said that, I get the anger based on no information provided from the doctor.

• One of the posts was from a very angry patient because his penis was smaller after surgery. What I read was that you can expect your penis to be 1” shorter. I also read that after about a year the length comes back (mine did not). Not sure if this is true. I think that both my penis and testicles are smaller unless I just get out of the hot tub or shower. You can cut both my penis and testicles off if it will allow me some additional time with my wife, kids and grandkids. It would have been nice to know about the shorter penis and smaller testicles prior to surgery however!

I am constantly reminding myself that anything I experience as a result of my Radical Prostatectomy is minor compared to what I would have experienced without the surgery. It is good to be alive! Thanks to God and to my doctor for the opportunity to move forward with my life with my wife, kids and grandkids.

I wrote that post shortly after surgery. It has now been 17 months since my Prostatectomy and I still cannot get an erection allowing penetration. I have struggled with some anger issues with regards to this issue. Intellectually, I tell myself this is a small price to pay to be alive, but emotionally, I am still angry.

I have felt very alone with all of these issues. People seem reluctant to talk about how to masturbate while having coffee…go figure!

My doctor told me he had spared both nerves and that I should be able to achieve an erection, but when I told him at the one year anniversary that my erections were about 70% his comment was…well that is something positive. Very cavalier of him…I wonder if he lost the ability to have an erection if his attitude would be the same.

He offered me three options…Pills, TriMix Injections or surgery to do a penile implant. I thought it interesting that he was willing to do a penile implant at the one year mark. Everything I have read says it sometimes takes much longer to recover the ability to achieve an erection. I no longer trust this doctor. I am also disappointed that other options were not offered. A penile pump comes to mind. I don't know much about it...my doctor did not present it as an option.

I had already tried pills with no success so I chose to try the TriMix. I had an appointment for him to instruct me on how to give myself the injection. My prescription did not come in time so he told me how to do the injection and sent me on my way with the helpful words…”you can do this.” Imagine shoving a needle into your penis based on verbal instructions. Again…I found a good video online from another doctor explaining the process.

The shot is not as bad as you would think, but there is some discomfort both giving the injection and with the erection. I was going to pass after trying it for one month, but missed the erections so opted to try again.

The penile implant looked promising but one of the posts talked about the fact that you can feel the pump day to day, walking etc. This pushed me to the Trimix.

I read about a new way to administer the Trimix that I want to talk to my doctor about. It is called Trimix Gel. The gel is injected up the urethra (without a needle). Why do I need to find out about this here (online)?

If you’re a doctor and you are reading this…your patients want more medical information and would like to think you care about what we are going through.

Let me address the elephant in the room...why don't I change doctors? This is easier said than done. I am afraid of what that might mean. It may happen someday.

I would like to be a catalyst for change. If not in the medical community then at least on the patient side. Information is power.

I have offered information that I hope is helpful and productive. I would offer one piece of advice. Do not live one day (of whatever time you have left) as a victim. It is a lousy way to live life and no one wants to be around a victim. Please note...I am telling myself this every day, long before I pass it on to you.

Thanks to Inspire for giving me an appropriate place to post my thoughts and feelings.

I wish each of you God’s Blessings.

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