I barely slept due to a combination of nerves and my roommate repeatedly switching his light on and off (he’s elderly and apparently very senile). I was first on the surgery list, so the nurses popped up around 05:30 to remind me to shower and change into the fetching totally-open-up-the-back surgery gown.
Right on time, at 08:30, I was wheeled down but there was a queue in the pre-op area and it was 08:45 before someone came to fetch me and after 9 before I was taken into the operating theatre. I’m pretty familiar with the whole procedure, the staff were very pleasant and chatty, and before long I was out.
As usual my memories from recovery are a bit confused. I’d asked them to call my husband when I got out of surgery and I remember reminding them while I was still pretty out of it, but they never called him. Fortunately he’d guessed about the right time anyway, so he was waiting for me at the ward when I was wheeled up there a couple of hours later.
Compared to my previous urethroplasty I’d say I had a lot more pain on waking up this time. In recovery I needed some extra paracetamol for the aching in my groin and then as the local anaesthetic in my cheek wore off I needed a couple of doses of morphine.
Up at the ward the groin pain was OK, a constant dull ache, but I needed some local anaesthetic gel for my cheek to be able to eat the horrendously dry fish we got for dinner. As always I was hungry rather than nauseous after the general anaesthetic.
The surgeon came to see me in the afternoon and she seemed very happy with how things had gone. She said there were 5 cm of urethra that was completely scarred and unsalvageable but the rest looked healthy. That was a relief, I was worried they’d discover more scarring. The pain in my cheek was explained by them having to take a roughly 5 by 3 cm chunk of tissue to make the graft, much more than last time.
I’m not allowed to sit up fully today and I’m to stay in bed for five days altogether. I was glad to hear that I am allowed to get up to use the toilet, so I won’t have to poop in a bedpan. Small mercies! They left in my suprapubic catheter and I’ve (apparently) got a urethral catheter through the healthy urethra near the tip of my penis, looping out over the dressing covering the graft and then back in at the base of my penis and into the bladder.
So now I’m just relaxing in bed and trying to find ways to keep myself amused. It’s just as well I planned ahead and brought my laptop. I took a photo of the dressing, but it’s not especially interesting.
In my online medical records I can see the surgeon’s full narrative of the surgery, so here it is (translated from Swedish):
Patient in flat position, surgery area washed and dried sterile. Begin to apply gel in the meatus, insert a 14 Ch catheter circa 5 cm then dead stop. Incision in the skin over the urethra. Subsequently with scissors through the subcutaneous tissue. Place urethroplasty hooks. Open the urethra along the midline, where it is significantly fibrotic from the incision and circa 5 cm proximally, then opens up nicely. Decide that I must excise the whole fibrotic area. Measure a strip 5 cm long and barely 3 cm wide. Subsequently the graft is taken from the right hand side of the cheek, draw ut 5 x 3 cm after I marked out the opening for Stensen’s duct. Inject local anaesthetic under the tissue. I separate the graft when I reach 5 cm length. Control of haemostasis with diathermy. Place a compress with xylocaine-adrenaline in the cheek. Trim the transplant. Mesh [the graft]. Place the graft in position and fasten with a few stitches to the edges and also 3 rows of sutures to hold the graft down onto the corpora. Then stitch the skin edges to the graft and urethra, which I spatulated circa 6 mm at both proximal and distal ends. Lubricate the urethra. Lay a mepitel compress over the graft and a 14 Ch catheter in place. The penis is laid up towards the belly and pressure bandaged. Finally checking the wound in the cheek, finish with two single stitches since I don’t want to burn right by the opening of Stensen’s duct.
They weren’t kidding when they said I’m low priority, I’m still waiting on a surgery date. So it looks like it definitely won’t be happening in April. May is difficult because I’ve got to travel for a wedding in the middle of the month and the surgeon says I’ll need a couple of weeks after surgery before I’m fit to travel.
That pushes it into late May or early June and if they can’t manage to fit me in then it’s summer holiday season and there’s basically no chance of getting any non-urgent surgery done until late August.
This is starting to get really annoying. I’m kind of scared to plan anything just in case it clashes with surgery but the hospital are really bad at communicating and unwilling to plan more than about a month in advance.
In the meantime I had my suprapubic catheter replaced. I’d previously had a transparent silicone one but the nurse put in one of the brown rubbery ones instead. I don’t seem to get on well with those. It was irritating my skin, making the wound bleed and I was getting a lot more bladder spasms. So I popped up to the hospital the other day and got them to replace it with another transparent one and things seem better now. Of course the nurse did that thing of treating me as if I was making it all up.
I’ve also been using a flip-flow valve with my catheter for the last couple of weeks, to try to remind my bladder of how it feels to fill and empty. At the moment I’ve still got a leg bag attached to it, since when I need to go it’s usually been pretty urgent and I ended up with bladder spasms forcing urine out through my urethra. I’m hoping to eventually change over to not having the bag. One thing I’ve noticed is that it’s really very difficult, when I’m standing at the toilet with the valve open, not to relax my urinary sphincter and let urine out through my urethra. If I do that too often it gets very irritated and painful.
So all of a sudden the surgeon who’d assisted with my urethroplasty back in May became interested in my case again. This time he wanted me to travel up to the hospital he worked at, a couple of hours north, so that he could do a cystoscopy under general anaesthetic and maybe attempt a urethrotomy.
We drove up, turned up at the ward at 09:00 like they asked and then there was the usual hanging around. I eventually got taken down to pre-op around 11:30 and then into surgery around 12:00.
By 14:00 I was back up at the ward. I still had a suprapubic catheter (although they’d replaced the one from two months ago) and no urethral catheter, so obviously they hadn’t succeeded with the urethrotomy.
When the surgeon came round he explained that as far as he could tell the whole grafted area was now blocked and they’d have to do another urethroplasty. This time he’s recommending a two-stage urethroplasty. That’s where they open up the urethra, do a buccal mucosal graft and then leave it open for six months to heal. After that they “tubularise” the graft by sewing the urethra closed again around a catheter. Success rates are apparently very good (I’ve seen figures as high as 98% but in this field there are a lot of not especially good studies) even with complex strictures of the penile urethra like mine.
There are two places in the country that can do this, both apparently equally good. So it’s a choice between two hours north (with a roughly three month waiting time) or three hours west (waiting time unknown). The next step is to pester my local urology department to contact both hospitals and give me a referral.
I had my x-ray appointment a couple of weeks ago. It seemed to go much more easily than previous urethrograms; having a suprapubic catheter makes it much easier to fill the bladder with contrast. Unfortunately it turns out that the urologist had only ordered a voiding cystourethrogram and not a retrograde one.
That meant that there was too little flow after the stricture to fill the urethra. The radiologist initially concluded that there was a huge stricture all the way from the inner end of the graft right to the meatus. They looked at the pictures again, together with the urologists, and decided that instead it’s two very narrow strictures with about 5 mm between them.
Of course, it’s impossible to tell how long the outer stricture is, or anything else about the urethra after that point.
I’ve been communicating with one of the urologists by email and he seems oddly resistant to the idea of doing a retrograde cystourethrogram. The current delaying tactic is to ask a colleague in another county for advice. That of course means letters going back and forth in the post, so it’ll be at least another week before they hear back from him.
So it seems I’ll be stuck with the suprapubic catheter for quite a while longer. There’s basically no chance of getting anything useful done before Christmas now.
Here’s an animation from the cystourethrogram. You can clearly see how the urethra upstream of the stricture gets stretched by the pressure and how long it takes for the urine/contrast to get past the stricture.
I got a really good night’s sleep back at home, apart from the usual thing of waking up every time I rolled over to make sure the catheter tube was OK.
Back at the hospital I had a short wait until the doctor came on rounds. He said he’d told the x-ray people to make me an appointment in a couple of weeks and discharged me. I returned home with a big bag of catheter and dressing supplies and went back to work after lunch.
The district nurse at my GP surgery called me at work during the afternoon to make an appointment to have my dressing changed. We can mostly handle that ourselves but it will a useful opportunity to get more supplies and maybe some advice on the best way to deal with the catheter.
One problem is showering. No matter how hard we try we can’t find a way of arranging the dressing so that water doesn’t run along the catheter tube and soak the inside of the dressing. That means I need to change it every time I shower and I end up only showering every other day.
The bladder spasms haven’t been as bad this time around, probably because I immediately asked for medication to prevent them. One positive sign has been that I’ve actually been able to pee a little bit, even though the suprapubic catheter isn’t letting pressure build up. That suggests that the inflammation in my urethra is going down already.
I turned up at the hospital on Tuesday for what I’d expected to be an outpatient urethrotomy. The staff on the ward seemed to think that I’d be staying in overnight but bad communication is pretty standard for my local urology department.
After changing into the not especially flattering gown I waited for a couple of hours before eventually being taken down to pre-op. Then I waited for about another hour before I was taken to theatre.
Some time later I was coming round from the anaesthetic and I vaguely remember some discussion about a damaged and leaking suprapubic catheter. They decided to just tape it up to fix the leak.
Once I’d woken up a bit more I had a look and discovered that I had a suprapubic catheter in but no urethral catheter. When the surgeon passed by (very briefly) I asked him if they’d done the urethrotomy and he said they had but ran off before I could ask any more questions. I was still pretty woozy at this point anyway.
I was feeling quite OK otherwise, I don’t seem to get nausea from general anaesthetics. When the post-op nurse said I was ready to go up to the ward I told her I was starting to feel pain in my belly she said she’d tell the ward staff and she’d also ask them to change my urine-soaked bedding.
I had to wait about an hour until they finally came to take me up to the ward and had several more hours of sitting it my own urine before the bedding was changed and I got some painkillers. The nurses kept asking me if I was in pain but then forgetting to do anything about it.
Eventually it became obvious that I wasn’t going to get to see a doctor that day and I’d have to stay in overnight. One nurse mentioned something about them abandoning the urethrotomy but that they didn’t have any more information.
Dinner was a surprisingly decent meatloaf. Oxycontin and earplugs helped me get an OK night’s sleep despite all the snoring in the room.
Finally I got to see a doctor during morning rounds. He said that they’d discovered that my urethra was almost completely closed and they’d given up on the urethrotomy. In 2-3 weeks I’d have a urethrogram and then they’d work out what to do next. In the meantime I’d have to keep the suprapubic catheter.
I explained to him just how angry I was about the whole situation. How I’d written to the surgeon about how severe my symptoms had got, so it shouldn’t have been a surprise, and how it had only got so bad because they’d wasted so much time scheduling my operation. He said he’d arrange for me to meet with the surgeon to discuss it with him and that I should get to go home later that day.
The rest of Wednesday I mostly passed hanging around, waiting to meet the surgeon and to be discharged. When I eventually got to meet him the surgeon was very conciliatory and acknowledged that things had gone wrong but that they were just following procedures. He also explained that I need to wait a couple of weeks before the urethrogram to allow the inflammation to go down.
I then had to wait for the suprapubic catheter to be replaced. Although it wasn’t leaking I’d noticed that it was sucking in air bubbles and I wasn’t happy with the idea of going home with it already damaged when I’m going to have to live with it for weeks. On the other hand, after my last experience I wasn’t looking forward to the procedure.
This time the new catheter went in on the first attempt but the sensation of having my bladder filled to bursting point was just as horrible as before. They’d also not waited very long after injecting the local anaesthetic, so it was a bit more painful too.
Because of all the hanging around it was now too late to discharge me properly but the staff agreed I could go home on “leave” for the night.
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.
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.
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.
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.
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.
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.
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.
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.