Here’s what it looks like now.
Apart from that there’s nothing much to report. I’m still getting the odd tiny bit of bleeding from the part where the urethra comes out from the head of my penis and joins the graft but that’s apparently nothing to worry about.
Still no major changes. The stitches are dissolving gradually, only a few are left but one of them in particular seems to be digging in a bit and causing an occasional spot of blood.
This is what it looks like this week.
Since the dressing came off I’ve been using male incontinence pads under my normal underwear. Fortunately I haven’t had any problems with incontinence but there was some seepage from the wound. That’s pretty much stopped now but I want to keep the wound clean and also hold my penis pointing upwards and prevent rubbing.
One good thing since the post-surgery swelling died down is that the curving of my penis when it’s erect is gone. It’s now back to how it used to look, apart from the gaping wound on the underside.
After having had the catheter for so long I was expecting more trouble with retraining my bladder. At first I was having to run to the toilet quite often, and urgently, but that seems to have passed now.
Not much change since last week. The stitches are still gradually coming out. Almost all of the stitches round the edge of the graft seem to be gone, along with the ones going from the graft up towards my foreskin. There are still a few of the stitches holding the graft down and they seem to be causing a little bit of irritation and bleeding just now; I hope they’ll dissolve soon. The ones in my scrotum also seem to be hanging on, although they’re not giving me any trouble.
No pain but some occasional slight discomfort when the stitches pull.
Here’s the latest picture of the healing wound.
Quite a few of the stitches have fallen out or disappeared, although they seem to be causing bruising before they give up. The graft itself is still looking nice and pink and isn’t seeping as much as it was. The best part is that I can now sleep through the night without any painkillers. I’m still seeing some blood spotting from time to time but it’s very little and now seldom.
According to the surgeon I should be able to resume most activities about six weeks after surgery. That’s next week but if the stitches are still there or there’s any bleeding I’ll have to put off swimming a bit longer. At least I’ll be able to start going to the gym again and working off some of the flab I’ve accumulated during my enforced idleness.
The graft is still looking good, as you can see in the pictures here. My cheek has now completely healed over and the two stitches have disappeared. The scarring in my cheek is still a little bit prominent but I know that will gradually go away with time.
Some of the stitches in my penis seem to have already fallen out, some of the others look looser. I’ve sent an email to the surgeon asking when I can resume various activities (exercise and sex, for example) and if I’ll be allowed to swim.
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.