Dilatation update

Over the summer I gradually reduced the frequency of dilatation and I’m now down to once a week. It seems a lot like that’s how it’ll continue, unless someone comes up with a miracle treatment for difficult recurring strictures.

The dilatation itself is pretty quick and easy. By the end of each week the flow gets noticeably worse but after I’ve poked the stricture with the catheter it goes back to normal.

I still have very little sensation on the underside of my penis and I doubt that’s going to improve now. But apart from the surgery scars it’s looking more or less like it used to.

So the current situation is not really what I was hoping for at the start of the whole saga but I’ve decided that any further surgery is likely to only make things worse.

Dilation update, 7 weeks later

Since the urethrotomy and infection things have been pretty OK. I’ve been dilating daily, apart from a brief attempt at reducing it to every other day. When I did that it was getting much harder to push the catheter through the stricture so I thought it best to go back to doing it daily.

The main problem has been one of bureaucracy. After the urethrotomy I got a box of 30 dilation catheters and the nurse told me to ask my local urology department to prescribe me more. I contacted them and asked for dilation catheters but they sent me normal drainage catheters, with the small holes for urine to flow through, rather than the completely smooth dilation catheters.

It turns out that dilation catheters are a special order, not on their usual list, so the request had to go up the hierarchy for approval. Four weeks later I was running out of dilation catheters but had managed to extend my supply by requesting some free samples from the manufacturer. The urology nurse claimed she’d ordered them but they still hadn’t turned up.

So for the last week or so I’ve been using the normal catheters. I can feel the holes catching on the edge of the stricture and they seem to be scraping the graft/neourethra, causing some burning when I pee.

The dilation catheters have finally turned up and as far as I can work out from the shipping information on the box they weren’t shipped until the 28th of June.

The next step is probably to have another try at reducing the frequency of dilation.

Two-stage urethroplasty: stage 2, day 14 after surgery – catheter removal

About four hours driving today for a 15 minute hospital appointment but neither I nor the surgeons who did the urethroplasty really trust my local urology department.

The surgeon seemed very happy with the appearance of the wound. I agree, they did some really neat suturing. There’s one suture at the foreskin end that’s sticking out a bit and he said I could remove that myself.

He pulled out the catheter without any trouble and it wasn’t really any more uncomfortable than usual. I had an early lunch and had a pee before getting back in the car, my first normal pee since October 2015! The flow seemed good and strong and it wasn’t too painful.

Later in the day it was getting a bit more painful and there was a hint of blood but I’m guessing that’s just irritation of the wound on the inside.

The only instructions I got were no sex or cycling for another two weeks and to generally avoid strenuous exercise that might affect that area. Once I get to four weeks after surgery I can apparently do whatever I want.

I’ll have an appointment at my local hospital in about a month for a urine flow measurement. The surgeon was very emphatic that they shouldn’t do anything else and I should contact him with any questions rather than the local urology department.

Two-stage urethroplasty: stage 2, day 4 after surgery

We walked into town for lunch today and the only problem I had was the usual discomfort from the urethral catheter.

I’d had a shower earlier in the morning and my husband changed the dressing for me afterwards. That meant that I got to see how the wound looks and get some pictures.

It’s looking surprisingly good, considering what my penis has been through over the last few years. Not very much bruising and really neat suturing, you can hardly see the stitches. At the foreskin end you can see that the wound veers off to one side; I think that’s where the surgeon took a little bit of skin to repair the fibrotic area from the temporary urethral opening that was there.

Two-stage urethroplasty: stage 2, surgery description

The surgeon’s narrative of the surgery has shown up in my online records (translated from Swedish):

Patient under general anaesthetic, flat position. Surgery area washed and dried sterile. Inspected the plate [the grafted area], which looks good, distally somewhat narrowed so we decided to include some skin. At the join between the distal plate and his urethra it’s also slightly fibrotic. Incision with scalpel along the long side of the transplant down to the corpora. Then incision across circa four millimeters distally from the join between the distal edge of the transplant and his own urethra. Cut through the fibrotic area and could excise the fibrosis with a little skin. Then incision across proximally. Stitched the urethra with 5/0 BioSyn running suture. Joined together well over a 12 Ch catheter. Mobilised subcutaneous tissue to cover the row of sutures. No tension in tissue. No twisting. Stitched the skin in two layers, first two individual subcutaneous stitches, finished with intracutaneous MonoCryl running suture. Applied dressing, penis upwards and light dressing on it.

Two-stage urethroplasty: stage 2, 1 day after surgery

It took me a long time to get to sleep, I think I eventually dozed off around midnight. Then I was woken up by pain from an erection around 2 am. I’d managed to get the nurse to leave one dose of oxycodone by my bed so I could take it immediately and it lasted for the rest of the night.

As usual I got woken up at 6 am to have my temperature taken and then didn’t get breakfast until after 8 am. At rounds they told me that I’d be getting discharged later today. I had to contact my husband so that he could arrange coming to collect me.

The rest of the day was mostly spent hanging around the dayroom. They have surprisingly hard and uncomfortable chairs for a ward where patients often have tender nether regions.

I finally got to meet the surgeon after lunch. He seemed happy with how the surgery had gone. I’m to go back in a couple of weeks to have the catheter removed.

The two-hour drive home was uneventful but almost as soon as I got in the door I had a really strong bladder spasm. Then a little bit later I had one that was so strong it managed to squeeze some urine out around the catheter. I’m hoping the effect of the tolterodine is still building up. I’m avoiding caffeine for a bit anyway, since that can apparently make bladder spasms worse.

Two-stage urethroplasty: stage 2, surgery day

I took the train through yesterday for my admission appointment at the hospital. They’d told me I’d be admitted to the ward but it turns out there wasn’t a bed available so they booked me into a hotel in town. That worked out well since I’m sure I slept much better than I would have in the hospital.

At 06:45 this morning the taxi picked me up and it was the now-familiar routine of preparation then being wheeled down to the operating theatre.

This time I didn’t get left in recovery as long, so I was at the ward in time for lunch. I’d made a point of asking the recovery staff to ask them to keep some for me. For some reason I never feel ill after general anaesthetic but I’m usually ravenous after the fast.

I wasn’t in so much pain this time, I just have to call the nurse to ask for more pain relief when I start to be able to feel the stabbing pains through the ache in my scrotum. I think the stabbing pain might be as things shift about down there, it’s one of those body parts that’s seldom still for long.

Lunch was a stew made with doner kebab meat, not something I’d ever had before, it was OK. The crêpes with fresh fruit during the afternoon were actually quite nice though. Dinner was allegedly moussaka but I couldn’t find any aubergine and very little meat.

No sign of a doctor all day. I’d been hoping to ask why I only had a urethral catheter, when I was expecting to have a supra-pubic as well. I’ll have to wait and ask in the morning.

One problem with not seeing a doctor was that I couldn’t discuss pain relief and when I asked one of the nurses she insisted it was too late to make any changes to what had been ordered for me. Of course that meant that they hadn’t given me any slow-release painkillers, apparently being awoken unnecessarily by intense pain during the night isn’t something they care about. I did manage to get Tolterodine to deal with the bladder spasms without the usual arguments though.

My husband drove through after work to keep me company for a while and help me argue with the nurse. Getting adequate long-lasting pain relief for the nights is another point I’ll have to bring up during rounds tomorrow.

So now I’m settling down for the night, hoping my room mate won’t be too noisy.

Photos from day 19 after first stage of two-stage urethroplasty

The healing wound on my penis, 19 days after the first stage of the two-stage urethroplasty. The graft is looking healthy and the stitches are loosening.
The healing wound on my penis, 19 days after the first stage of the two-stage urethroplasty. The graft is looking healthy and the stitches are loosening.
The healing wound on my penis, 19 days after the first stage of the two-stage urethroplasty. The graft is looking healthy and the stitches are loosening.
The healing wound on my penis, 19 days after the first stage of the two-stage urethroplasty. The graft is looking healthy and the stitches are loosening.

Two-stage urethroplasty: stage 1, 12 days after surgery

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.

Photos from day 12 after first stage of two-stage urethroplasty

My penis with the dressing over the graft and urethral catheter in place, just before they were removed.
My penis with the dressing over the graft and urethral catheter in place, just before they were removed.
My penis after the catheters and dressing were removed. You can see the temporary urethral outlet at the top of my scrotum, then the pink graft and then the whitish part is the original urethra.
My penis after the catheters and dressing were removed. You can see the temporary urethral outlet at the top of my scrotum, then the pink graft and then the whitish part is the original urethra.
My penis after the catheters and dressing were removed. You can see the temporary urethral outlet at the top of my scrotum, then the pink graft and then the whitish part is the original urethra.
My penis after the catheters and dressing were removed. You can see the temporary urethral outlet at the top of my scrotum, then the pink graft and then the whitish part is the original urethra.

Two-stage urethroplasty: stage 1, 11 days after surgery

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.

Two-stage urethroplasty: stage 1, one week after surgery

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.

Two-stage urethroplasty: stage 1, 5 days after surgery

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.

Photos from days 5 and 6 after first stage of two-stage urethroplasty

Penis with stitches and an open wound covering about a third of the underside.
The wound on my penis, on the fifth day after the first stage of my two-stage urethroplasty.
Penis with stitches and an open wound covering about a third of the underside.
The wound on my penis, on the fifth day after the first stage of my two-stage urethroplasty.
Healing wound inside the right cheek, tongue and teeth partially obscuring
The wound inside my mouth on the sixth day after the first stage of my two-stage urethroplasty

Two-stage urethroplasty: stage 1, 4 days after surgery

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).

Two-stage urethroplasty: stage 1, 3 days after surgery

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.

 

Two-stage urethroplasty: stage 1, 2 days after surgery

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.

Two-stage urethroplasty: stage 1, 1 day after surgery

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.

Two-stage urethroplasty: stage 1, surgery day

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.

Still waiting for a surgery date

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.

Visit to x-ray and more waiting

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.

Cystourethrogram from early November showing how my urethra was almost completely blocked
Cystourethrogram showing my urethra almost completely blocked

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.

After the failed surgery

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.

Follow-up appointment

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.

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.