My story started sometime back in the fifties when my father and mother decided to get together and have kids without having the forethought to discuss the genetic baggage each was bringing to the union. Prostate cancer has deep and fertile roots in both sides of my family tree.

As for myself, I thought I was happy and healthy until April of 2016 when my primary care doc called to say my PSA results came back at 5.1 and suddenly I had a referral to a urologist.

In this area, urologists are apparently a rare thing as getting an appointment takes months. In this case it took three months and July's PSA test came back at 4.7. The digital rectal examination he performed also identified a nodule high on my prostate. He suggested a biopsy to identify what was in the nodule that he had felt.

Since my PSA results had gone down, my insurance wanted another PSA done in a month before they'd opt to spring for the cost of a biopsy.

In August, the PSA returned higher at 5.13 and my insurance grudgingly allowed a biopsy was probably in order.

Two months later, a 12 core biopsy was performed in October and I was staged as T2c with one 4+3=7 core and three lesser 3+3=6 cores. All in all, the biopsy wasn't overly painful. My wife said she could tell then the needle was grabbing a core because my eyes widened with each one.

I talked with other men who had went with external beam radiation and brachytherapy and decided I wanted the prostate gone. I elected to go with DaVinci surgery which was scheduled for January of 2017.

I began trying to mitigate the expected side effects by losing more weight, practicing the dark art of Kegel exercises and taking samples of Viagra my urologist had provided with instructions for me to take notes and let him know how they worked.

Surgery day arrived along with the area's first significant snowfall, nevertheless my wife delivered my to the pre-op area before the scheduled 5:30AM appointment time. My surgeon, however; was several hours late.

I was told the surgery itself would take around 4 hours depending on what the surgeon discovered while in there. Additionally, I was scheduled to be stay over one night, to allow for monitoring. I also had to successfully have a bowel movement or pass gas before being discharged.

I had read walking helped to pass gas. I set out to walk the floor of the hospital and leave my scent everywhere.

The walking happened, but the passing gas did not. After spending my second night in the hospital, I asked for and received a suppository. Within two hours I was being discharged.

The urologist had prescribed a small daily dose of Viagra to keep the blood moving down there and promote healing. My insurance wasn't having any of that, nor were they having a prescription for the cheaper generic Sildenafil. (There's a special place in xxxx for these clowns.)

A side note here, providing your skin will take it, ask for the pad that glues to your thigh to hold the catheter tubing, the elastic bands I was initially provided would slip as I walked the hospital floor. Not a great feeling.

I had the catheter for two weeks before the scheduled post operation meeting with the surgeon. At the meeting: the surgeon said the pathology didn't upgrade my cancer staging; also noting that when he and his assistant were placing the arms of the robot, that was made difficult because surgical planes that they normally follow to successfully arrive at the prostate weren't there or they weren't in the right place. (My body has seen some abuse in my younger life.)

My 3 month PSA checks all came back at <0.01. Life was good. Well, good for a eunuch who constantly wet himself.

At the one year after prostatectomy mark: having used a vacuum pump, my penis length seemed only slightly shorter, perhaps a quarter inch; erections could return with a little stimulation, but they a weak erections, not stuffable even with the help of a goodly dose of sildenafil; I was also still fully incontinent.

When I say fully incontinent, I mean 100% will drain from my bladder if I am not actively holding a kegel with full pressure. The instant I relax the kegel, the flow begins. Sitting, standing, laying down, I constantly leak.

Professional physical therapy was tried for the incontinence. Insurance approved 30 sessions of PT to build my core, also approving electro-therapy and biofeedback. The end result of the sessions left me with a stronger core and proof that I knew how to exercise my pelvic floor, but still incontinent.

My urologist opined collagen injections would likely be futile. He was willing to try a sling but thought I'd be better served by an artificial urinary sphincter.

I opted for the AUS and he said his office would get it scheduled.

Three months later when I was in the office for my next PSA draw, I asked about the timeline for the expected surgery. I was informed due to recent hospital mergers in the area, new negotiations were ongoing between the AUS manufacturer and the new hospital conglomerate. Until the negotiations were settled, there would be not AUS surgeries provisioned in our area.

The company I worked for suddenly found itself without for prospects for new work and I was let go from my job of 20 years.

I now buy my own insurance from the ACA exchange. High deductible, then 20% copays until I reach a $7,000 annual max out of pocket.

New insurance is also only good in the state of Virginia, except for emergencies. This necessitated getting a new slate doctors as my other doctors were in nearby Tennessee.

Primary care doc referred me to a nearby urologist. Turns out the new uro doesn't do surgery so requested a new referral and got transferred to a urologist at the University of Virginia.

The urologist I was referred to has stopped doing surgeries. She did however, call an associate who does perform surgeries, so not another month or more lost to reschedule.

Two hundred questions and some physical tests later, it was determined that an AUS was in fact needed and surgery was scheduled for the middle of June.

Surgery was completed on an outpatient basis, with very minimal pain and swelling. I left the facility with a Foley catheter for that was to stay in place for 24 hours, then I would be allowed to remove it myself.

Four days from now, I am scheduled to meet with the surgeon to see if everything was successful and activate the unit.

I'm hoping for 100% dry, but even a pad a day would be welcome.

I'll update after my appointment with the surgeon.

The AUS activation session with the surgeon took twenty minutes, there were the usual discussions regarding any pain and swelling after surgery followed by the doctor demonstrating how I should hold the pump, then the actual activation while I stood on a towel. After successfully cycling the pump a couple of times, I was released with orders to keep avoiding heavy lifting for another week and to help the AUS by trying to cycle at least every two hours.

After 923 days of wearing a clamp, using a catheter or steeping my junk in a tea of urine via pads or pullups appear to be over.

In the three days since activation, I can leave the shower without having to use a secondary towel on the floor to catch the leaks and I have enjoyed three nights of sleep without wearing a full pull up.

The inconvenience of having to pull my underwear down below my ass to operate the pump doesn't bother me as I had already gotten quite used to dropping my drawers in order to empty my external catheter bag.

Wow. It's been a year since my last post.

The best news is of course my PSA remaining undetectable as "<0.02".

I met with the surgeon who did the AUS install this past October for a followup. This was mainly a question and answer meeting to see if I was having issues with the implant. Everything appears to be going well with the AUS from his standpoint.

For my part, I am thrilled that I was able to get the AUS implanted without complications. Every now and then, I do get a little urine that gets past the AUS, usually after drinking too much liquids and ignoring the signs that I have to go, or the occasional body twist. I can usually go an entire day with a single shield although depending on what my plans are for the day, I might wear a guard instead.

It's been almost 4 years since my last post. Wow!

The best news is so far PSA tests resolve to undetectable. I like undetectable for 7 years.

The mixed news is the first AUS failed in September of 2022. It took about a month from the time I first detected there was a problem to when it absolutely refused to function at all.

I scheduled and appointment with the original surgeon who did the prostatectomy. After arriving at the clinic, the staff informed me that the surgeon had left the practice. So I saw the replacement doctor, who it turns out doesn't even do surgery.

I had my PCP refer me to the doctor who did the original AUS and finally got an appointment in December. After some back and forth on whether the device or the patient had failed, the doctor said they would schedule me for a bladder pressure test and a cystoscopy on the same day. (Due to the distance I had to travel.)

They forgot me and scheduled nothing. I called at the beginning of March and they found a slot two weeks out.

The pressure test was interesting. The standard "Here's a gown, strip off everything else, put this on and sit there." They made sure I had privacy to do this. In comes the doc, two nurses, and 6 students. The doc swipes the robe aside while pointing and describing to the 6 exactly what they were going to do to my junk. The two nurses made sure I was spread correctly and scooted me to the front edge of the chair where they inserted two things: a catheter with two sets of balloons and an inflatable butt plug. They filled my bladder up with saline, then put pressure in the butt plug to see what my bladder would do. After that, they retracted the catheter bit by bit and tested the urethra for leaks. The test was successful.

They all left the room and let me have my privacy so that I could get dressed. Once done, they had me go through a connecting door into another room where I was given a gown and the standard stripping instructions by a nurse.

When I was declothed and robed, the nurse comes in, pulls the robe aside and explains the cystoscope is large and so she was going to give me some lidocaine. How do they do that you ask? Via a catheter. Run a cath in, then while extracting the cath, leave a trail of lidocaine.

The doc comes in as cath goes out and I get a look at the scope... (It *really* wasn't that big.) All looks good to the doc and we schedule the surgery for May.

At the end of March, my new company and I go separate ways. (I'm learning that companies want me to pay for my own implants.) I kept their COBRA option at $930 ish a month so that my deductable and Max Out Of Pocket wouldn't have to start anew.

Replacement surgery happened and they discovered two pinhole leaks in the old system.

In January of 2024, I discovered the cause of the pinhole leaks and my current irritant. Splinters. Yes, you heard that correctly. I have literal wood down there. Best the PCP can figure is the splinters were loosened from their resting spots when I was using the vacuum pump. This is the result of a tricycle accident I had in 1963 when I crashed crotch first into a telephone pole. Apparently the docs at the time pulled the obvious splinters but were unwilling to root around a 4 year olds junk. The splinters have moved on to the meatus of my penis. I go on Medicare in May, I will have a doc look at a solution then. I'm not paying $10k in deductables to work on it now.

Cheers!

Mike's e-mail address is: 540g273m8213 AT gmail.com (replace "AT" with "@")