Waiting for follow-up appointment

I never got a reply from the surgeon to my message about my wound reopening. It closed up again within a day or two and now the wound is looking pretty good, it’s not even very visible any more. The odd sensations from regrowing nerves now seem to mostly be in my foreskin instead of along the wound.

I did get a letter with a date for my follow-up appointment. Seems like they’d forgotten about it until I reminded them, again. With it being peak summer holiday season it was apparently impossible to give me an appointment in the period they originally told me (4-6 weeks after the removal of the catheter) and I’m going on vacation myself so the appointment’s not until the end of August.

Updates here will be sparse until the appointment, unless something interesting happens. I’m really hoping that nothing interesting happens.

Wound trouble

I got a bit of a fright on Friday night when the wound on my penis reopened. I was peeing before going to bed and I felt something wet on the underside of my penis. I thought it was maybe just sweat but when I moved my hand there was blood on it. My shout of surprise brought my husband to the bathroom and we had a look.

It turned that about 1 mm of the wound at the end furthest from the scrotum had opened up and was bleeding slightly. Apparently this can happen with wounds as the collagen that forms the original scar is replaced, it’s called dehiscence.

We washed the wound and stuck a dressing on it and by Saturday morning it was looking much better. Now it looks the same as it did before it reopened. We’ve been using steri-strips to try to reduce tension on that part of the scar.

I’m still waiting for my follow-up appointment, so I sent a message to the surgeon telling him about the reopening and reminding him about my follow-up. I’m hoping I’ll get an appointment before I go on vacation later in the month.

Added some new photos

I’ve added some photos showing the current state of my penis. These are, of course, not suitable for work.

There’s still quite a curve when it’s erect and I can feel it stretching inside but it’s not painful. Sensation along the scar is still odd, occasionally stabbing pains and it’s quite unpleasant if anything rubs on it. The scar is actually much less red than the camera’s flash makes it look.

The lumpy part of the scar in my mouth has gone, now all I can feel is a line along the inside of my cheek.

48 days after surgery photos

Added page with articles and studies

I’ve added a page with some references to articles and studies about urethral strictures and their treatment that I found useful while I was dealing with doctors who weren’t very familiar with the subject.

Knowing when they don’t know what they’re talking about is very useful. It also gave me some reassurance that I was making the right decisions about my treatment.

Six weeks after surgery

I got an email today from someone who’d found this blog and reminded me that I hadn’t updated in a little while (I tried to reply to him but there seemed to be a problem with the email address).

Things are going quite well. The wound is becoming less visible and also less sensitive, it’s now mostly just feeling kind of odd when touched rather than slightly painful as it was before. I get occasional random twinges of pain, especially in the part of the wound on my scrotum but I’m assuming this is all just part of the nerves regrowing.

Peeing still stings a bit sometimes but that seems to be getting better too. I’ve also tried some gentle sexual activity and that hasn’t caused any problems. The internal scarring/swelling is still causing quite a severe bend to my penis when it’s erect and that’s something I’ll talk to the doctor about at my follow-up appointment in a few weeks.

When I get a chance I’ll take some more pictures and upload them. I’m also planning a post with some of the useful studies and papers I found.

Post-catheter update

I’ve now had a couple of days without the catheter and it’s going well. I get a good flow with I’m peeing, no dribbling afterwards and only a little bit of stinging pain now. In fact the pain is less than before the surgery.

There hasn’t been any bleeding since Thursday and the bladder spasms at the end of urination are now pretty much gone. The suprapubic catheter wound has closed up and seems to be healing well, although it’s still a little sensitive to pressure.

Cystourethrogram

I was kind of excited and nervous all day, sort of more nervous that before the urethroplasty, because it was the day I’d find out whether I’d be rid of the suprapubic catheter.

After lunch I took the bus up to the hospital and after a short wait it was time to change into one of the lovely hospital gowns and go into the fluoroscopy room. This time we could skip all the messing around trying to squirt contrast up my urethra and just run it in through the suprapubic catheter. It took over an hour anyway but I managed to get over the weirdness of peeing on demand while lying under an x-ray machine and they got some good pictures.

In the first picture you can clearly see the stricture before the urethroplasty (but after the urethrotomy). “Mynning” is the tip of my penis and “kateterspets” is the end of the catheter they were using to put contrast in. All the stuff around the tip is the hand of the nurse who was holding everything in position.

The next two are the new pictures after surgery. You can see that my urethra is now a decent width all the way along. There’s a slight narrowing marked around where the graft is but it’s possible that was just a blood clot (a big lump did come out while I was peeing).

After x-ray it was time to go down to urology and see what the surgeon thought. He seemed very happy and said they’d remove the catheter. He was also asking about how the graft donor site in my cheek was doing. It seems he was used to putting in stitches but had left it this time on advice from his visiting colleague. From what I’ve read having stitches is much worse from a patient’s perspective and my cheek has healed quickly and well. I asked him when I could start having sex again and he said I could as soon as I felt ready. When I pressed him a bit he said maybe waiting another couple of weeks would be a good idea.

The nurse came to remove the catheter. After she cut the stitches holding it in place I felt a tug and thought it was out. Then there was another tug. Then a long pulling sensation. It seemed that there was roughly 20 cm of catheter coiled up in my bladder!

It was so nice to be able to walk home without the catheter irritating my bladder and to sleep without worrying about tangling catheter tubing. I really enjoyed my shower this morning.

Peeing is also a joy, with a good strong flow. There’s still a little bit of stinging and some bleeding afterwards but that should pass.

Catheter wrangling

Anyone who has had a catheter can tell you that they’re a nuisance. It takes a while to work out a way to sort out all the tubing so that it’s comfortable. In my experience so far I usually figure it out just before I get rid of the catheter.

This time around I’ve figured out that the mesh “sock” thing is the most comfortable for holding the bag but if I’m walking it slips down my leg too easily. The velcro/elastic straps hold it in place better but get uncomfortable after a while.

So here’s my solution for when I’m going to be walking about a bit:Catheter bag with "sock" and strap

That’s the “sock” with the upper strap on top of it, just below my knee and the top of the bag held up by the strap. I don’t use the lower strap, the bag is held close to my leg by the “sock”.

I have the bag on my lower leg because there tends to be more space in my trousers there, rather than up around my thigh. When I first got out of the hospital they gave me a leg bag with tubing cut so short I had to have the bag high up my thing, which also made lying in bed difficult.

 

Fourth week after operation

The suprapubic catheter they put in (held in by stitches) before I was discharged from the hospital is a bit different from the others I’ve had. It has two separate parts: the narrow catheter tube itself (clear silicone) and the adapter to connect it to a drainage bag.

Unfortunately the two parts can be separated quite easily and this occasionally happens if the catheter tubing slips through the adhesive catheter holders. On Tuesday morning it pulled off and I didn’t notice until the urine had soaked through my t-shirt. This time I’ve arranged it so that one catheter holder is holding the adapter and the catheter tube has plenty of slack.

I got an appointment for the cystourethrogram for Wednesday the 10th. After that the doctors will be able to decide whether my urethra has healed and isn’t leaking. If everything is OK the suprapubic catheter will come out and I’ll be back to peeing normally.

I also got an appointment with a nurse on Monday the 8th. There was nothing to say what the appointment was for so I contacted the urology department. It turns out that they’d messed up the scheduling and the nurse was going to remove the suprapubic catheter before the x-ray appointment. They fixed it so that I’d just go up to urology straight after the cystourethrogram.

I’d thought the worst of the night-time erection pain was over, but in the early hours of Thursday I woke up with one and was just dozing off again when I felt three sharp pains inside my penis, along with a strange snapping sensation. I’m assuming it was some of the remaining stitches that had partially dissolved and were snapped by the tension. Since that I don’t get any pain with erections, just a sensation of tightness along the urethra.

Things are starting to look more normal, the scar is fading nicely with just one reddish patch. I can still feel inflammation along the whole repaired stretch of urethra but I had the same after the urethrotomy and that seems to take a couple of months to go away.

Third week after surgery photos

Third week after operation

The bladder spasms came back with a vengeance on Tuesday, with quite a bit of leakage through the urethra. Even worse on Wednesday. It felt like my bladder was full when I woke up and there was very little in the night bag. The leakage also caused some pain and bleeding in my urethra.

My husband somewhat forcefully arranged an appointment for me at the urology clinic (it’s sometimes very useful being married to a doctor). I was seen within ten minutes of arriving at the hospital and the nurse flushed out the catheter and spoke to a doctor to get me a prescription for tolterodine for the spasms.

The flushing and drugs seemed to work. I had a few spasms later in the week but they were much milder and didn’t cause leakage.

My penis was looking less swollen and the bruising was almost gone. With an erection there’s a noticeable downward curve that it didn’t have before. I’m hoping that will go away once all the stitches have dissolved and the internal swelling has gone. The external stitches had all come out by the end of the week. The scar on my cheek is still irregular and noticeable but not giving me any trouble. Click here for photos.

Second week after operation

The pain of night-time erections gradually got better during the week, taking some slow-release ibuprofen along with paracetamol before going to bed helped.

The bladder spasms were better once I was rid of the urethral catheter. I started working from home although I was very tired due to poor sleep and avoiding caffeine. I slowly started drinking coffee again as the week went on.

When I was pooping I kept getting some very odd sensations in my prostate, maybe because it was still sensitive from the catheter. On one occasion I had what I’m pretty sure was a prostate orgasm, which was very intense.

I started off going to the nurse at my GP surgery to get the suprapubic catheter dressings changed every few days. I usually got wet when I showered but the wound didn’t seem to be seeping at all. The nurse changed my leg bag on Monday and I got supplies so that I could do that and replace the suprapubic catheter dressings myself.

For a couple of days I was getting pretty severe pain on the left side of my jaw and apparently grinding my teeth during the night. That went away by itself, probably just a side-effect of my mouth being wedged open during the surgery. Otherwise the wound in my cheek was healing up pretty nicely, still a little bit irregular and sensitive but not causing any problems.

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.