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.

Surprise surgery and another infection

Last week I was logged in to my online medical records and noticed that I had an appointment booked with the surgeon who did my urethroplasty back in January. I hadn’t heard anything about it so I called the hospital and was told that it was a real appointment (not just a phone call). The letter about the appointment turned up the next day, saying they be doing uroflowmetry and with no other information.

So I drove up to the hospital on Tuesday and met the surgeon and was a bit surprised when he announced that he was going to try to do a quick urethrotomy while I was there. Preparation took a while (nobody could find the urethrotome), which was probably just as well since local anaesthetics take a while to take effect on me.

Since this current stricture was only about 3 cm in and very short he could get the rigid cystoscope in without any problems. It was interesting to watch him hacking away at the scar tissue on the screen. I didn’t feel a thing. He also had a quick look at the rest of the graft and seemed happy that it looked healthy and was wide enough to get the 20 Ch scope through.

Then I had time to grab a quick lunch before meeting a nurse to be instructed in how to do clean intermittent dilatation to keep the stricture open. I got some supplies but I’ll have to contact my local urology clinic for more, since I’ll be doing it daily to start with.

I’d managed to pee normally a couple of times at the hospital. There was a fair bit of blood but the local anaesthetic was still working, so it wasn’t painful. By the time I got home the anaesthetic had worn off. While I was actually peeing there was a burning sensation, which I expected and it was bearable, but afterwards I got rapidly increasing intense pain. This was really about the worst pain I’ve ever experienced, I nearly blacked out sitting on the toilet. The pain gradually faded away over a few minutes.

My husband brought some local anaesthetic gel and I took some strong painkillers but nothing seemed to help with the horrific pain every time I peed that afternoon. To make things worse my bladder was still irritated from the pressure due to the stricture so I was peeing quite often.

Then as the evening went on I started to feel worse and worse, achy and feverish. My temperature had got up to over 38°C, so my husband called a taxi and we went to the ER. I got seen fairly quickly, gave the same information to several different people and they took various samples. By around midnight they’d decided it was a post-operative infection and to keep me in but they couldn’t find a bed for me for several more hours and it was about half past three before I eventually got up to the ward.

The antibiotics seemed to start working pretty quick, so I was already feeling better yesterday and got to go home for the night. I went in this morning for the final dose of IV antibiotics and they’ve discharged me with antibiotic tablets.

So now I just have to see how I get on with the dilatation. It seems easy enough to do and the surgeon reckons that after a few months I should only need to do it once a week. I’m a bit concerned that that’ll be once a week forever but I could live with that.

Some progress

So after sending emails and messages to the local urology consultant who I was supposed to talk to on the 28th I suddenly got a phone call from a nurse on Friday morning asking if I could see him at 11:15.

Thinking the point of the meeting would be just to discuss what to do next I quickly got in touch with my husband and he managed to get away from work so he could join me.

I was a bit surprised when my name was called in the urology department and the nurse led me into a treatment room and asked me to remove my clothes, since the consultant would be doing a cystoscopy. There’d been no mention of that in the phone call.

Even better, once I was prepared the consultant shows up quite obviously without having read through my notes or made any effort to remind himself of my case. My husband and I had to go through the whole history of surgeries, some of which the consultant himself had performed.

Anyway, he started doing the cystoscopy and, as I’d expected, couldn’t get more than a centimeter or two in before reaching the new stricture. For once I could actually see the screen myself. The good news is that although the stricture is quite severe (I’d guess narrowed down to about 1 mm diameter) it looks like it’s short and the tissue is still looking quite pink and not too scarred.

The consultant then wanted to immediately start sticking in a guidewire, apparently with the intention of poking a catheter in there or something. My husband nearly leapt on him and explained why that was a bad idea, something you’d expect a urologist to know.

He responded very sullenly (his manner had been curt and dismissive the whole time) with “so what do you want me to do?”. I’d actually already told him in the emails and messages I’d sent but apparently he hadn’t read them.

In the end he agreed to request urethrography, so that we can get an accurate idea of the extent of the new stricture, and to forward the results to the surgeon who’d performed the most recent urethroplasty.

Now I just have to hope that they can schedule the urethrography quickly, that the radiologists have some idea what they’re doing and that I can get this stricture treated before it becomes much worse.

Things I wish I’d known three years ago

Here are the current American Urological Association guidelines for male urethral stricture. They were apparently published about a year ago.

A couple of sections from the executive summary are especially interesting for me:

4. Clinicians planning non-urgent intervention for a known stricture should determine the length and location of the urethral stricture. (Expert Opinion)

and

15. Surgeons should offer urethroplasty to patients with penile urethral strictures, given the expected high recurrence rates with endoscopic treatments. (Moderate Recommendation; Evidence Strength Grade C)

It seems like the expert opinion is now much firmer that there’s no point even attempting urethrotomy on penile urethral strictures and also that it’s important to determine the length and location before deciding on any surgery.

Of course pretty much everything in those guidelines is “expert opinion” (the panel agrees but there’s no evidence either way) or a recommendation without particularly good evidence.

If I hadn’t trusted the doctors back at the start of this whole ordeal, back in 2014, and done some research I might have found the earlier studies and articles that these guidelines have come from. In that case I’d have insisted that they determine the length of the stricture before surgery but instead I assumed they knew what they were doing and let them do that first urethrotomy.

So a surgeon with no idea of what he was dealing with hacked away at my urethra and either worsened an existing long stricture that should never have been treated with urethrotomy or turned a short and relatively easily treatable stricture into a mass of fibrosis. There’s now no way of knowing what the situation was before the urethrotomy and local urologists are very shifty when discussing it.

Uroflowmetry results

I had my uroflowmetry appointment up at the hospital this morning, the results look like this:

The graph really shouldn’t be that long, or that flat and the peak should be much higher. Qmax (the peak flow) should be somewhere over 15 ml/s, I managed 4.1 ml/s. So the stricture has recurred, or a new one has formed.

It’s felt for the last few weeks like the flow is restricted at the far end of the graft area, where it joins the original urethra. That was where they removed some scarring during the most recent surgery and patched it with a bit of skin. It seems like that patching hasn’t worked.

So now I’m back in the position of being barely able to pee and desperately trying to persuade a bunch of doctors that it might be worth doing something about the problem soon, before it gets worse. The local hospital couldn’t even manage to have me see a doctor after I got the results. Instead they’ve booked a time for him to call me, on the 28th of April!

I’m pretty fed up.

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.

Urethroplasty stage two soon

Tomorrow I’ll be taking the train to the hospital where I had the first stage of my two-stage urethroplasty. After quite a long wait I’m finally getting the second stage surgery.

Also, someone called Rebecca contacted me through the form on this blog but my reply got bounced back because there was a mistake in the address. So if you’re reading this Rebecca, please try again, I’m not ignoring you.

Two-stage urethroplasty: stage 1, 8 weeks after surgery

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.

Two-stage urethroplasty: stage 1, 6 weeks after surgery

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.

This week’s photo.

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

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.

Two-stage urethroplasty: stage 1, 19 days after surgery

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.

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.

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.

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.

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.