Operation + 6 days (Monday)

After a very disturbed night due to erections I got up and pooped again. This time it was preceded by really bad bladder spasms and a few centilitres of urine squeezed past the catheter.

Took the bus up to the hospital in time for morning rounds. A more senior urologist was doing rounds and he’d been informed about the trouble with the suprapubic catheter. I had to wait for someone to put in a new one, which would be done on the ward with local anaesthetic.

The treatment room in the urology ward seems to mostly be used as a storeroom, with nurses coming and going all the time to collect supplies and pick up labels from the printer. An operating light had a sign saying that it was faulty and had been reported in March.

A young doctor and a male nurse were going to be replacing the suprapubic catheter. After a bit of a clean the nurse started squirting saline into my bladder, stopping when it got uncomfortable. At the same time the doctor was injecting the local anaesthetic, with a fearsomely long needle. The first batch wasn’t quite enough and I was glad that he believed me when I told him I usually need more.

Once the anaesthetic had taken effect the doctor took the huge thick needle (it looked like a skewer) and started poking it through my belly, causing all sorts of odd sensations. That didn’t work, so he pulled it out and tried again. The second attempt failed, liquid would come out of the needle but when he inserted the catheter nothing came out through it.

The third attempt was also unsuccessful so the doctor scuttled off to consult a more senior colleague. It seems the advice was for more water, to make my bladder easier to find. The fourth and fifth attempts were incredibly uncomfortable as I felt like I desperately needed to pee. I ended up panting and feeling panicky. As they still hadn’t succeeded they let the saline out while the doctor went to fetch his colleague.

The senior doctor seemed to be in a charming mood and he fairly quickly and efficiently got the catheter in and then spent a while stitching it firmly to my belly.

I got dressed and went along to the day room for lunch, feeling a bit shaky. Then I had to hang around all afternoon waiting to be discharged. A nurse came to remove the urethral catheter and left me a supply of night bags but no drugs nor any discharge information.

Eventually another nurse gave me my drugs to take home. My husband insisted that I needed to see a doctor before I left and finally the young one who’d had all the trouble with the suprapubic catheter turned up and discharged me.

Operation + 5 days (Sunday)

Had a less horrible night, still woken by painful erections but managed to at least get a few solid hours of sleep.

The catheter night bag was really full and difficult to empty. When I cut the corner off a jet of urine sprayed the area around the toilet, so I had to wipe it up and mop the bathroom.

I managed to poop for the first time in four days and without any spasms. I’d avoided caffeine during the day, so maybe that helped.

Operation + 4 days (Saturday)

I had a horrible night with a persistent semi-erection from about 04:00, usually becoming fully erect with about 15 minutes of me dozing off.

The dressing on my penis was in need of replacement but we didn’t have the supplies to do it. While everything is more visible I could see that my penis is looking quite twisted but that was apparently due to internal bleeding and swelling and will resolve itself. Click here for photos.

I risked some coffee at lunch but then had some horrible bladder spasms in the afternoon. I’m not sure if the two things are related.

Operation + 3 days (Friday)

I slept fairly well, still with the occasional erections waking me.

Still no output from the suprapubic catheter so I headed up to the urology ward around 08:30. They seemed to be expecting me, so I sat at my bed and waited for rounds.

The doctor suggested trying flushing out the suprapubic catheter again. So a nurse came round to do that. As she removed the dressing from the suprapubic catheter the whole thing came along with it. I could see quite clearly that the balloon had burst and the catheter had obviously pulled out of my bladder.

It looked a lot like when the nurse had used forceps to remove the old catheter bag that had over-pressurised the balloon and burst it.

After a quick consultation with the doctor and a more senior nurse it was decided that I’d manage over the weekend with just the one catheter and go back in for discharge on Monday as planned.

I had a comfortable afternoon at home watching TV. The upside of not having the suprapubic catheter is that I didn’t have any of the belly discomfort I’d had since the operation.

The non-stick dressing on my penis and scrotum had started to come away from the stitches so I could see how far down onto my scrotum the wound went. That explained why there was so much tenderness and bruising down there. Click here for photos.

Sleeping was easier with only one tube to wrangle.

Operation + 2 days (Thursday)

With the paracetamol I could lie comfortably on my side, so I got to sleep quite quickly. I still got woken several times during the night by very painful erections.

I really didn’t want more of them so at about 04:30 I decided to stay awake until breakfast. Then I dozed off again and wasn’t woken by another erection until just before 07:00.

Before rounds I let the nurses know I’d like to go home on leave. In Swedish hospitals they’ll let you go home before you’re officially discharged on what they call permission. The doctor on rounds agreed that I’d be fine at home. He changed the dressing on my penis; the old one had got pretty grotty by this point.

A bit later the nurses swapped to leg bags for both of the catheters. They had a terrible time removing the original ones I’d got after surgery. Those catheters had a threaded connector rather than the usual push-fit ones and they just wouldn’t come out. One of the nurses ended up using forceps to grip the catheter tubing.

After lunch my husband came to take me home. Having not had a decent night’s sleep for a couple of days I felt like a nap in the afternoon. That was when we discovered that the nurse had cut the leg bag tubes so short that the bags had to lie beside me on the bed. I also noticed that nothing had come out through the suprapubic catheter since the bag change.

I slept for an hour or so and then woke up with a feeling of pressure in my bladder. The urethral bag had filled (to it’s tiny 500 ml capacity) but there was still nothing in the other bag. When I emptied the bag a strong bladder spasm squeezed urine out around the urethral catheter, leaving a lingering burning sensation.

In the evening we took the bus back up to the hospital to have them check the suprapubic catheter. When the nurse tried flushing it out nothing came out of the urethral catheter but I got a feeling of pressure and water leaked out of the suprapubic wound.

Further attempts to squirt saline into and suck saline out of the two catheters didn’t result in much. So I drank some water and waiting to see if the suprapubic catheter had started working again. It hadn’t, so we went home but with some better leg bags this time.

This time I could organise the tubing much more comfortably, with the leg bags hanging off a drawer on my bedside cabinet, and got to sleep quite early.

Operation + 1 day (Wednesday)

I woke up during the night with a feeling of pressure in my bladder. The bag had filled up so I had to call a nurse to empty it. After that they started checking regularly.

I was woken again by an erection at about 05:30. It was very painful but it was a relief to know that things were still working. After a second one I was kind of scared to go back to sleep so I just read. Bright sunshine was already coming in through the windows at 06:30.

The nurses came around eight but kept being distracted by other patients. They told me they’d rearrange all my tubes so that I could get up but by then it was breakfast time. Egg, bread, cheese and ham and I even managed to drink the coffee once I’d let it cool down.

My re-plumbing was delayed again waiting for the surgeon’s round. When he appeared he told me it had gone well. The stricture was about 1.5 cm (as they’d seen on the urethrogram) but they’d had to repair about 5 cm of unviable urethra (scarring from the urethrotomy?). I asked him about the painful erections but he seemed a bit awkwarded-out. He wanted to keep me in until Monday for monitoring.

I eventually got a new dressing and better catheter bags and clothes. Had a wash at the sink, because my dressings mustn’t get wet. My scrotum was still quite purple. Click here for photos.

I had coffee with the young guy from the opposite bed, who’d also had some kind of urethroplasty, and the old guy from the next bed. It was quite nice to be up and about, even if I did have to carry my two catheter bags with me in a plastic bag.

My husband turned up for lunch, mine didn’t arrive until a bit later (slimy kalops and runny apple purée). We went for a walk around the hospital. Standing up straight was quite hard because my belly muscles are very tense and I was getting quite frequent bladder spasms.

I spent the afternoon reading, interrupted occasionally by nurses coming to measure me. I asked for a jug of water when I realised there wasn’t much urine in the catheter bags.

At one point I was sitting reading when all of a sudden an air bubble forced its way out past the urethral catheter with a loud cracking noise and a sharp pain. I called a nurse but apparently it’s normal. Another interesting new experience.

In the evening I got told off by a nurse for emptying my own catheter bags. Apparently they wanted to do it so they could record the amount of urine, but of course they hadn’t told me that. The nurse showed me how to inject the blood thinners and had me do it myself.

I got some paracetamol for pain during the night and it was time for bed. Still feeling quite bloated and crampy.

Operation day (Tuesday)

I got up at 05:30 for the 300 ml of pineapple juice that was all I was allowed to drink before the operation.

On arrival at the urology ward there was a bit of a wait because “my” bed was still occupied. The hospital is suffering from terrible bed shortages, so that wasn’t a huge surprise. I ended up in a room that had been “closed” and was partly used as an office for the final checks and to change into the stylish surgery clothes.

A very friendly nurse and two student nurses wheeled me down to the surgery department, where there was more waiting in the pre-operative room. I had my last pee for a few weeks and then one of the students nervously put a cannula in (and did a good job). Lying there in the almost empty room I felt surprisingly relaxed, although a bit shaky, which could have been due to the lack of food.

The anaesthetist was being held up by another patient, so the anaesthetist nurse wheeled me through to theatre and they got to work preparing me while they found another anaesthetist. The pre-med made me pleasantly woozy and I vaguely remember chatting with the staff then I was out like a light as soon as the anaesthetic went it.

Waking up was much less peaceful. I don’t remember much, apart from being convinced that my husband was there (which he wasn’t). The nurse told me I had been quite confused and difficult.

I stayed in post-op for quite a long time, at first quite disorientated but then just bored. I got to talk to my husband on the phone. They had me lying on my right side (they’d taken the graft from my left cheek) but the bed was too short so my legs got really stiff and painful and nobody seemed to pay attention when I complained about it. I wasn’t feeling any other pain though, they’d given me fentanyl.

A surgeon passed by and told me that the surgery had gone well but that the anaesthetists had had some trouble. They couldn’t get the breathing tube in through my nose, after attempting with both nostrils until they were bloody, so they gave up and put one in my mouth instead. A nurse appeared with hot towels and helped me get rid of some of the dried blood on my face.

A bit later my husband sneaked in, still in his scrubs from work. That seemed to remind them to get rid of me. They’d thought I was still tired from the anaesthetic but I think it was mostly just that I was napping because there was nothing else to do.

I had a quick look under the covers and things didn’t look too horrific. There was blood soaking through the dressing on my penis, which was taped pointing up towards my belly button, and a bit around the site of the suprapubic catheter. As expected there was also a catheter coming out of my penis. I was starting to get a bit of pain from the suprapubic catheter wound now, it felt a bit like muscle soreness from too much exercise. Click here for photos.

Once I’d been wheeled up to the urology ward I got a bed beside the window in a four-bed room. My clothes and valuables appeared along with some water and my husband came back just as dinner was being served.

Dinner was pancakes and pea soup. I let the soup go lukewarm and managed it OK but left the giant lump of cauliflower sitting in the bottom of the bowl. My cheek was a bit tender where they’d taken the graft but much less painful than I expected after reading other people’s experiences. Some aching in my groin too, my scrotum was looking pretty bruised and swollen.

I got some antibiotics, the nurse stabbed me in the leg with some blood-thinning drugs and I got a horrible nightgown to change into. I was even brought a little dish so that I could clean (half of) my teeth. At this point I realised that maybe bringing the toothbrush with the tongue scraper on the back hadn’t been such a good idea.

It was obviously time for bed so I settled down and tried to get some sleep, without much success. A little old lady arrived quite late in the night and was very noisy. Eventually she started continuously wailing and crying for help, as well as talking to someone who wasn’t there. When I called the nurse for her she said she was fine. After a couple of repetitions of this I called the nurse again and told her that I couldn’t sleep with all the noise, even with earplugs, and the little old lady was moved to another room.

I had trouble sleeping for more than short bursts because I could only lie on my back. My left side was out because of my cheek and if I lay on my right side my swollen scrotum was painful.

Scheduling and admission

Again I had to wait a while for my surgery date. This time it was complicated for them to coordinate the local schedules with the schedule of the visiting surgeon. I eventually got a letter to let me know that it would be the 12th of May.

Two weeks before surgery I had an appointment for admission. A nurse in urology took blood and urine samples and measured my pulse and blood pressure. Then I got sent off to a different part of the hospital to meet an anaesthetist, who seemed happy that I wouldn’t pose any problems.

The whole thing was finished in just over an hour.

Around this time I took some “before” photos, so that I could compare afterwards. You can see them by clicking here.

Urethrography and discussing urethroplasty

Before I could see the senior urologist he wanted to know what he was dealing with, so I got an appointment for a cystourethrogram (x-ray of the urethra and bladder).

They’d be taking two related x-rays, a retrograde cystourethrogram (RCUG) as they squirted contrast through my urethra into my bladder and then a voiding cystourethrogram (VCUG) as I emptied my bladder.

The radiology staff didn’t seem especially familiar with the procedure, so even with a large crowd coming and going and giving advice it took over an hour. They seemed to have used too much numbing gel; every time they tried to inject the contrast the catheter would pop out.

The RCUG was eventually successful but the VCUG didn’t work so well. I found it very difficult to urinate on demand while lying on my side and having not had anything to drink for a couple of hours.

My x-ray appointment was at the end of January but I couldn’t get an appointment with the urologist until mid-March, partly because I was away quite a lot during those months.

When I finally saw the urologist he was the first doctor I’d met in the urology department with any bedside manner and he was very open to discussing the options.

I’d used the time before the appointment to continue my research and I’d found that in the few studies that actually tried to evaluate patient satisfaction buccal mucosal graft (using skin from the inside of the mouth) did better than penile flap (using skin from the penis) urethroplasty. It seems that the cosmetic results are better, there are fewer problems with skin tightness and less post-urination dribbling with the buccal mucosal graft.

The doctor would have preferred to use a penile flap and was more familiar with the technique. I had an especially awkward moment lying exposed on the examining table when he told me that there seemed to be plenty of spare skin and I had to try to explain that that’s not the case when my penis is erect.

He’d already discussed my case with a colleague in another county who had more experience with buccal mucosal grafts and we agreed that we’d go for that option and that he’d bring in his colleague to assist with the surgery.

The return of the stricture

Before the infection I’d had a couple of days of enjoying peeing normally, with a really strong flow. After the infection I assumed that the flow was being restricted by my swollen prostate. Once my prostate was back to normal it was obvious that the stricture had recurred within a month of the urethrotomy.

Reading the research on urethral strictures it seems that urethrotomy is often unsuccessful with strictures of the penile urethra, especially if they’re quite long. In some places they’re recommending doing urethrography to check the size and location before performing urethrotomy and in some cases going directly to urethroplasty instead.

At my next visit to urology, three months after the urethrotomy, the doctor was determined that the standard treatment was to repeat the urethrotomy. Fortunately I’d prepared and was able to insist that all current research indicated that the first one had been pretty much doomed to failure and any successive urethrotomy had almost no chance of success (due to the location and speed of recurrence). After trying to scare me with warnings of the dangers of urethroplasty he finally gave in and agreed to refer me to a more senior urologist.

After urethrotomy

So a week after the surgery I had the usual problems that guys seem to have with catheters but that nobody bothers to tell you about.

Being woken up during the night when erections meant that my penis simultaneously tried to pull out the catheter and scraped it over the inside of my urethra was a new experience, and one I could have happily done without. After a couple of days I learned to tape the catheter into a position that minimised the unpleasantness.

I think that night-time erections were a particular problem for me because my penis changes a lot in size between flaccid and erect. So an erection meant pulling an extra 10 cm or so of catheter over my wounded urethra. It was also a latex catheter and they seem to be stickier than the other types.

During the week with the catheter I worked from home and tried to avoid walking around too much. I never did find a position for the tubing that didn’t become uncomfortable while walking.

Having the catheter removed was very easy, although slightly delayed by a massive failure of the county’s healthcare IT system that morning. The nurse deflated the balloon and pulled it out smoothly, all I felt was a slightly odd sensation and it was done.

I went straight back to work afterwards and discovered that the catheter had left my prostate a bit tender, so I needed to use a soft cushion on my office chair.

A few days later I started feeling like I had flu or something. Several colds and flus were going around the office at the time but my husband insisted I go to the emergency room and it turned out I had a fairly severe urinary tract infection. By the time I was admitted to the urology ward, around midnight, I was sweating profusely and feeling pretty grim.

They kept me in the hospital for three days while the antibiotics started to take effect. When I was discharged I had a meeting with the doctor who’d done the urethrotomy. I was a bit concerned that I hadn’t had any night-time erections for a few days (which was probably just due to being really ill) but he just casually said that it could be a complication of the surgery and made a weird comment about the next step being anastomosis and that that would likely cause shortening of the penis. It was an odd thing to say both because anastomosis isn’t at all a suitable surgery for strictures in the penile urethra and because it had nothing to do with the question I’d asked.

After a week of recovery I could concentrate for long enough to go back to work, although the infection had settled in my prostate and needed another couple of weeks of antibiotics to be completely rid of it.

Urethrotomy

Summer holidays are a big thing here in Sweden. Most people take four weeks off in a block and that includes hospital staff. I had no chance of getting my urethrotomy done before the summer holiday period started and we’d already booked holidays for most of August.

So when I got back from vacation at the end of August there was a letter with an appointment for outpatient surgery in just over a week. Somewhat inconveniently it was going to be at a small hospital (that seems to exist largely for political reasons) about 60 km away, instead of the county’s main hospital that’s a 10 minute bus ride away.

I’d still had almost no information about the procedure, apart from some very generic instructions about not eating or drinking and washing with special disinfectant sponges before the operation.

On the day my husband drove me to the hospital and we sat and waited. I had a quick chat with the surgeon, a nurse and the anaesthetist and got changed into the lovely stockings and nightgown. Then I waited some more.

Eventually I was called into the operating theatre, got myself settled on the table, hooked up to various machines and drips and was discussing the Scottish independence referendum with the surgeon when the anaesthetic took effect.

I woke up in the recovery ward, feeling pretty OK but still a bit confused. My husband was allowed in and the surgeon came in to tell me that the operation had been a success. He said he’d had to cut away 5 cm of stricture, although it later turned out that he hadn’t bothered to record this anywhere.

Once I’d had a sandwich and some (horrible) coffee I was judged fit to go home. They’d put in a foley catheter during the surgery but I didn’t really get much in the way of instructions of supplies for looking after it. I was told to make an appointment with the nurse at my GP to have the catheter removed after a week.

First investigations

First I got called up to the hospital for a CT scan, to make sure the blood wasn’t coming from my kidneys. It wasn’t, so I got an appointment at the urology clinic. By this time it was the end of June.

Before my appointment I had to record frequency and volume of urination and (separately) how long the first 100 ml of urine took. My trip to the clinic started with uroflowmetry, peeing into a machine that records the volume of urine over time. That showed that there was definitely something wrong, the flow was way too low.

The doctor then did a cystoscopy, or at least tried to. He only got a couple of centimetres in before hitting a blockage, with only about a 1 mm passage through it. That explained the difficulties.

He then said he’d have me scheduled for a urethrotomy (DVIU), without really explaining anything about the procedure. He seemed more concerned about the difficulties of scheduling it, with very little time left before everyone went on their summer holidays, than talking to me. Unfortunately that turned out to be a pattern in the urology department. They didn’t do any further investigations of how long the stricture was.

Getting to see a urologist

I made an appointment at the local hospital’s STD clinic, thinking they were a good way to get into the system. They found evidence of inflammation in my urethra (which has been happening for years, without any positive test results for infection) and immediately assumed it was being caused by an STD and wanted me to start on antibiotics while I waited for test results.

Instead of waiting and taking antibiotics that I was fairly sure I didn’t need I made an appointment with my GP. He also immediately leapt to the conclusion that it was probably chlamydia. Fortunately my husband, who is himself a doctor, was there and pointed out that for men any sign of blood in the urine means that you should be referred to urology. The GP grudgingly gave in and referred me.

The STD tests came back negative, unsurprisingly.

Introduction

Like a lot of guys, I’d noticed the force of the flow when I was peeing decreasing over the years. I’d assumed it was just a normal part of getting older. In May 2014 it finally got to the point where I thought there must be something wrong. Peeing was becoming painful and the final straw was when I noticed a bit of blood.

It turned out to be a urethral stricture, scar tissue narrowing my urethra, and that diagnosis has so far resulted in lots of visits to the hospital and several surgeries: a urethrotomy (plus two failed attempts) and two buccal mucosal graft urethroplasties. In particular it was a stricture of the pendulous urethra, or distal urethra, within the external part of the penis. That seems to be quite unusual, especially when it’s not caused by disease or injury.

I’ve noticed that there’s not a lot of information out there about strictures and the treatments for them, especially from a patient’s point of view. So I’m writing this blog in the hope that it might be helpful for other guys with the same problem. If you want to get in touch with me you can use this contact form.

There are pictures to accompany some of the posts, but you’ll have to click a link to see them so that nobody unwillingly sees pictures of a penis. You can also find them in the NSFW category.