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.

Back in hospital

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.

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.

Waiting for the next surgery

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.

Another failed urethrotomy attempt

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.

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.

Disappointing surgery

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.

So many delays, so much pain

I’ve been meaning to write an update for a while but never quite got round to it. Things have got much worse and I’ve been having a lot more hassle with the urology department.

It seems that their efforts to dilate the stricture have (maybe unsurprisingly) instead made it contract more. Over the months since my follow-up appointment it has got to the point where it’s now worse than before my urethroplasty. Peeing is agony and I’m now having problems with suddenly and urgently needing to pee, often at inconvenient times. Sex is just impossible because of the pain of ejaculation.

While this has been going on I’ve been keeping in touch with the urology department about getting an appointment for urethrotomy. At first I got a letter giving me a date to go in for a pre-operative examination but no operation date. Then they cancelled that.

It turns out that the senior urologist had decided (for reasons nobody I’ve spoken to can/will explain) that I should be referred off to the surgeon who’d come here to assist with my urethroplasty. Of course, they didn’t bother to phone or email him to get his opinion and they sent the referral off by post.

Weeks passed without anything useful happening. I emailed the surgeon I’d been referred to and he quickly replied saying that there was no need for him to be involved and that he’d referred me back to my local hospital.

I emailed the surgeon at my local hospital with this news, but apparently he couldn’t do anything about it until he received the referral back, by post. Another week passed and I emailed the local surgeon with a detailed description of my current situation. He forwarded me on to the nurse who schedules operations, asking her to find an appointment as soon as possible.

So I’ve now finally got an appointment for a urethrotomy next week. Of course, given that the stricture is now much worse I doubt that there’s much chance of long-term success. I fear there’s another urethroplasty in my future.

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.

Waiting for follow-up appointment

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

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

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

Wound trouble

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

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

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

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

Added some new photos

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

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

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

Added page with articles and studies

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

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

Six weeks after surgery

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

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

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

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

Post-catheter update

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

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

Cystourethrogram

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

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

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

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

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

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

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

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

Catheter wrangling

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

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

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

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

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

 

Fourth week after operation

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

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

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

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

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

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

Third week after operation

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

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

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

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

Second week after operation

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

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

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

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

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