I’m free of catheters!
After a short wait at the hospital the surgeon removed all the dressings and removed both catheters. There are some before and after pictures here.
So it seems like the graft is looking good, all pink and healthy. The surgeon was initially a bit concerned about infection because of the whitish stuff around the edges but there’s no irritation and she decided it’s just the usual result of having a catheter in and no washing for a week.
Now I can pee sort of normally. I have to sit down and the pee either shoots along the underside of my penis or dribbles down my scrotum but for the first time since October I can actually pee.
I also realised another unpleasant part of not being able to wash properly for almost three weeks, the head of my penis was covered in smegma. Fortunately it was quite dry and not smelly. A quick wash fixed that problem.
My next visit to the hospital (barring unforeseen developments) will be in September, to assess the graft before the second-stage surgery a month later.
The local anaesthetic worked for the pain in my cheek. The pain was so bad that it was feeling as if my teeth and jaw were also aching. Doses of xylocaine gel before meals, before going to bed and whenever the pain got too bad helped enormously.
Fortunately the nerve seems to have healed up a bit. I get the occasional ache but nothing so severe and I’m now only using the xylocaine before brushing my teeth.
Erections are still painful but the pain is well controlled by the slow-release painkillers. Pain during the day is now at the point where I can forget to take my paracetamol without it making a huge difference.
One current problem is the smell from the dressing. The surgeon warned me it would start to smell unpleasant but this is worse than I could have expected. I suppose it’s a combination of dried blood and exudate from the wound plus all the things that you normally wash away from your crotch and penis. The smell is best described as appalling. On the plus side it doesn’t smell like anything is rotting, so I’m not worried about it.
So, I just have to wait until tomorrow to find out how the graft is doing. It’ll be a huge olfactory relief just to get a new dressing and a bit of a wash down there.
Later today it will have been a week since my urethroplasty surgery. I’m now back home and sleeping much better, even if my activity is still very restricted (on doctor’s orders).
This time I seem to have managed to successfully communicate to the doctors that my main problem is with painful erections and now that I have some slow-release opioids I can sleep through the night without those disturbing me.
Unfortunately now my cheek is giving me trouble. It has tended to ache occasionally since the surgery but the last couple of days the level of pain has been getting much worse. It comes and goes and doesn’t really seem to be helped by any of the painkillers (paracetamol, ibuprofen or morphine).
Last night I kept getting really terrible pain if I rolled onto my left side. I could feel the weight of my wounded right cheek settling onto my teeth and it was unbearable. Morphine didn’t help, I just had to wait for the wave of pain to pass. Brushing the teeth in the right side of my mouth is impossible.
My husband (he’s a doctor) has suggested that it could be being caused by a damaged nerve in my cheek. We’re going to try local anaesthetic gel, to see if that will help at all.
My final night in the hospital was probably the best since surgery. I’d set alarms to wake me up to take morphine so that it wouldn’t wear off completely during the night, that seemed to be a success.
Just after breakfast the surgeon came round and removed the dressing on my penis. Apparently everything is looking good, you can see that the graft is looking pink and healthy through the gel dressing in the photos. So I’m to come back through in a week so that she can have another look and I can get rid of at least one of the catheters.
Actually getting discharged took most of the rest of the day. A nurse turned up with a load of discharge paperwork. I refused the catheter bags they were offering since I’ve already got a good stock of ones that I know I can get on with. Then a junior doctor came to discuss prescriptions for drugs to take home.
The admin staff on the ward were kind enough to arrange for transport from home to the hospital for next week’s visit, since I can’t drive or take public transport. Dealing with the part of our county council that handles that stuff is usually unpleasant.
So I finally got away from the ward and stopped at the pharmacy in the hospital to pick up my prescriptions. Except the junior doctor had forgotten to submit them (electronically). My husband went and spoke with him and fixed that. Next we discovered that he hadn’t remembered all of the drugs, but the pharmacist called him and sorted that out.
I still couldn’t pick up the last of the drugs because some delay in the system meant that the pharmacist couldn’t see that prescription, so we decided to pick them up on our way home.
The drive home was fairly comfortable, some pain on rough sections of road but nothing too bad. My cheek and jaw were starting to hurt again though.
For the next week I’m pretty much trapped at home and to keep activity to a minimum. I may have a go at working from home but I’m not sure how long I’ll be able to sit at a desk.
This time it was a pretty mixed night. It started very badly, with constant disruptions from my roommate. It seemed he kept tangling, kinking and pulling out his various tubes. So the nurses would arrive, turn on the lights and start speaking to him extremely loudly. He also had his CPAP machine, which was surprisingly quiet. Unfortunately it sounds like a vacuum cleaner if you pull off the mask and leave it running, which he kept doing.
The poor old soul’s on his last legs and a bit confused, so I can’t be too annoyed. On the other hand it would be nice if he wasn’t in a room with me.
Later in the night I managed to sleep fairly solidly, without disruptions or pain. Unfortunately by about 04:30 all the painkillers had left my body and it was time for the most painful erection yet. It really felt like something was going to burst. Fortunately the (male) nurse on duty was very quick to bring paracetamol and morphine.
So now that the fog has lifted the sun is shining into my room and this will hopefully be my last full day in the hospital (this time).
A much better night. I’d worked out that the morphine tablets last two or three hours. So I took one about half an hour before going to sleep. Before falling asleep I managed to get an erection, desperately trying to think about other things but without any effect.
During the night I asked for more morphine when I felt I needed it and actually got an OK night’s sleep.
The doctor at rounds said she’d remind the nurses to just leave the morphine tablets with me, so I don’t have to keep calling them during the night.
Washed and got dressed and then spent the rest of the morning working out how to defeat the stupid filtering on the hospital’s internet. As well as blocking websites they try to block anything apart from web browsing and it seems like their DNS is pretty broken too. For example today I suddenly got DNS errors for this site. Actually it seems like all .uk sites get DNS errors.
After lunch my husband came to visit and took me out for a bit of a spin in a wheelchair. Although sitting upright isn’t all that comfortable yet it was great to get a decent cup of coffee and go for a stroll/roll along the river. He also helped me wash my hair, which was sorely needed.
I started off the night dozing fitfully but eventually managed to get to sleep properly but interrupted by painful erections. At one point I called for a nurse, she came, ignored me, peered at my roommate and then left (I tried to call out but too hoarse). I pressed the button again and she eventually came back and started fiddling with my roommate’s catheter tubing. I said excuse me and she told me to wait until she was finished. Eventually she came over to my bed and I told her I was in quite severe pain. Of course I had to call and remind her again before she actually turned up with some morphine.
After breakfast and rounds I got up and had a wash, which made me feel a lot more human. The nurses changed my bedding so I wasn’t lying in my own bloodstains and shaved-off pubic hair any more. I got dressed in the hospital day clothes, that make you look like a convict.
I had a lot of trouble staying awake, so I dozed for a bit, having very weird half-awake dreams.
Lunch was isterband, which was OK but unfortunately slightly spicy and irritating to my cheek.
Dozed some more in the afternoon. Had some coffee but it wasn’t enough to keep me awake.
The evening was spent on Skype calls and Hangouts chats with family.
I had a fairly disturbed night, waking up a lot. After I got some morphine I finally managed to get off to sleep properly but was woken up by the searing pain of an erection at about five. Like last time, it’s nice to know things are still working but I could do without the pain.
Cornflakes with yoghurt and a cup of coffee for breakfast, without any serious pain from my cheek. It’s really amazing how quickly that heals.
At rounds I was told I could get up a little bit, but shouldn’t walk about too much. My night-time drug prescription was changed too, so I’d get a morphine tablet to take if I woke up during the night. The dressing was looking fine, no blood seeping through.
The cannula in my left elbow had come quite loose, the dressing hadn’t stuck very well in the first place and was hanging off. I asked three nurses to fix it but they all forgot. Eventually I managed to get a nurse who could do that and bring me a bowl so that I could brush my teeth.
I got up in the afternoon to change from the surgical gown into a nightshirt. Not much of an improvement but at least it doesn’t expose my arse to all and sundry. I made it through to the bathroom in the evening to clean my teeth. Getting in and out of bed is pretty painful but standing was OK.
During the day the confused elderly guy in the next bed was discharged and a new old man appeared with his wife. At least they said hello and introduced themselves.
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.
I’m back in hospital waiting for the first stage of my two-stage urethroplasty tomorrow. We drove the two hours up here in the morning and then most of the rest of the day was spent in the admission process and hanging around. We managed to break out for a little while so I could have a nice meal though.
Now I’m sitting in my bed and my husband is on his way back home. I’m going to be here for at least five days after surgery and it’s much cheaper for him to hire a car and drive up to visit than to stay in a hotel here.
So I guess my next update will be after surgery.
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 I had to drive two hours in each direction for a twenty minute meeting with a surgeon today. Overall it was probably worth it though.
After a quick review of what had already been tried she went over the planned two-stage urethroplasty and gave me some detailed information about the first stage, especially recovery. It seems I’m going to be kept in the hospital for about five days after the surgery, more or less confined to bed.
I’m already on the waiting list, it looks like the first stage surgery will be in April or March. On the other hand, since the stricture won’t actually kill me I’m pretty low priority.
I finally had my follow-up appointment today. I mostly wanted to ask about the curvature, twist and pain of my erection and the continuing strange sensation in parts of my foreskin, where some patches are almost numb and others that feel like they’re sunburnt).
The first step, as usual, was uroflowmetry. I peed into the machine and returned to the waiting room. Then the nurse came back for me and took me to an examination room where she measured the remaining urine in my bladder with the ultrasound device. There were 90 ml remaining, although some of that might have been new as I’d had a lot to drink in the morning to make sure I could pee on demand.
After a while a junior doctor appeared, yet another one I’d never seen before. He told me that although the shape of the curve now looked normal the maximum flow rate was too low and they’d do a cystoscopy to check out what the problem was.
I wasn’t all that keen on the idea, knowing that cystoscopies have a relatively high chance of causing further damage. I was happier once I heard that one of the surgeons who’d performed my urethroplasty would be there.
After all the usual preparation, including two large doses of local anaesthetic gel squirted up my urethra, the endoscope went in.
The good news is that the graft is looking nicely pink and healthy. The bad news is that there’s a stricture where the graft joins the original urethra on the side towards the bladder. That has partially blocked my urethra at that point, although not enough to be very noticeable. You could just about see past the stricture to normal urethra on the other side, so it wasn’t very long at all, just a millimetre or two.
The doctors discussed with each other, with the nurse and me occasionally reminding them that I was there, and decided that I should try dilating the stricture for six months or so to see if it helps. That’s another thing I wasn’t keen on, knowing that dilation has an extremely poor success rate and can actually make things worse.
The nurse disappeared off to get a selection of different sizes of catheters to work out what size I should start with. I endured the awkward chit-chat and then silence with the senior doctor.
In the end only a number 8 catheter would pass through, after several attempts by both the nurse and the surgeon. It seems that there’s a sort of little pocket formed by the graft that kept catching the catheters and there’s no way I’d be able to get any useful size up there myself. They were hoping to start with at least a 12 and work up to a 16.
So now I’m waiting for an appointment for another urethrotomy.
This isn’t entirely surprising. Small, thin strictures of this kind are apparently common after urethroplasty. All the research I’ve seen suggests that the chance of recurrence after urethrotomy is low, I’m just kind of disappointed that the whole thing isn’t over yet.
One option I’m sort of considering is to hold off on the urethrotomy and see if the stricture gets any worse. I can live with it in its current state. I’ll have to read up on things a bit more and think about it.
And finally, the things I originally wanted to ask about (wonky erections and odd sensation) are all quite normal and related to scar tissue and regrowing nerves. I need to be patient. Also, erections are apparently good for stretching the scar tissue.
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.
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.
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.
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.
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.
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.