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.
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)
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.
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.
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.
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.
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.
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.
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.
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.
I finally had my follow-up visit to the urology clinic, to see how things are going six months after stage one of my urethroplasty.
They did uroflowmetry, which looked good, and the surgeon had a quick look at the graft. She thinks it has healed nicely and is ready for stage two.
Unfortunately she’s going to be off sick for a while in the coming months, so I might get my operation in the next month or so, or maybe after Christmas. In any case it’ll be about two or three days in hospital and a catheter for a couple of weeks.
I just realised it’s been quite a while since my last update. A combination of work and holidays, as well as nothing much having changed since July.
The current status is that the graft looks pretty much like it did back in July (a bit less red and bruised around the edges though). The weird sensations have gone as the nerves have grown back. Now that everything has healed up I was even able to go swimming.
The only recent problem has been with my foreskin. It has always been a little bit tight, although not tight enough to cause any problems. Unfortunately I wasn’t able to pull it back for several weeks after surgery and it has generally not been getting as much stretching as it usually does. As a result it tightened up further and the skin was cracking if I tried to pull it back. Some steroid cream and careful stretching has rapidly improved the situation, so it’s now more or less back to normal.
I’m now waiting for my follow-up appointment with the surgeon and to find out when they’re planning the second stage of the urethroplasty.
Here’s what it looks like now.
Apart from that there’s nothing much to report. I’m still getting the odd tiny bit of bleeding from the part where the urethra comes out from the head of my penis and joins the graft but that’s apparently nothing to worry about.
I recently got an email from a reader of this blog, who’s having stage 1 of a two-stage urethroplasty soon. He was asked some questions about the recovery from the surgery and that made me think it would be useful to write a summary of how it went for me.
- First five days after surgery: bed rest, barely allowed to move from bed. The surgeon was very keen that the graft not be disturbed. Pain from the stitches and general bruising to the penis, and from the graft site in my cheek. Some aching from bruising to my scrotum. Able to comfortably sit up in bed immediately.
- Second week: resting at home, movement very restricted. Still allowing the graft to settle in, until the surgeon could check it. Penis pain still quite bad at night but well managed with painkillers. Occasional pain during the day. Frequently using local anaesthetic gel to manage cheek pain. Able to walk normally but being deliberately careful.
- Third week: back to work. Cheek pain gone. Still needing painkillers to sleep through the night, reducing use during the day. Walking normally but not long distances. Catheters removed, having to pee quite often and urgently.
- Fourth and fifth weeks: more walking. No need for painkillers during the day and eventually not at night either. Walking quite a lot, especially during a trip to Portugal. Frequency of peeing back to normal but still often quite urgent.
- Sixth week: able to exercise again. Everything pretty much back to normal apart from having to sit down to pee.
My current status is that all the visible stitches have fallen out. There may still be some under the skin as I can feel a few lumps. I even have some sensation in the graft now, although it feels weird (in a way that’s impossible to describe).
I learned the other night that it’s a mistake to try to use a portaloo that has no lights, at night, after several beers. I didn’t want to sit down to pee (the thing was disgusting) and I managed to misalign the funnel I carry for that kind of emergency. As a result I had to walk home in slightly damp shorts.
Still no major changes. The stitches are dissolving gradually, only a few are left but one of them in particular seems to be digging in a bit and causing an occasional spot of blood.
This is what it looks like this week.
Since the dressing came off I’ve been using male incontinence pads under my normal underwear. Fortunately I haven’t had any problems with incontinence but there was some seepage from the wound. That’s pretty much stopped now but I want to keep the wound clean and also hold my penis pointing upwards and prevent rubbing.
One good thing since the post-surgery swelling died down is that the curving of my penis when it’s erect is gone. It’s now back to how it used to look, apart from the gaping wound on the underside.
After having had the catheter for so long I was expecting more trouble with retraining my bladder. At first I was having to run to the toilet quite often, and urgently, but that seems to have passed now.
Not much change since last week. The stitches are still gradually coming out. Almost all of the stitches round the edge of the graft seem to be gone, along with the ones going from the graft up towards my foreskin. There are still a few of the stitches holding the graft down and they seem to be causing a little bit of irritation and bleeding just now; I hope they’ll dissolve soon. The ones in my scrotum also seem to be hanging on, although they’re not giving me any trouble.
No pain but some occasional slight discomfort when the stitches pull.
This week’s photo.
Here’s the latest picture of the healing wound.
Quite a few of the stitches have fallen out or disappeared, although they seem to be causing bruising before they give up. The graft itself is still looking nice and pink and isn’t seeping as much as it was. The best part is that I can now sleep through the night without any painkillers. I’m still seeing some blood spotting from time to time but it’s very little and now seldom.
According to the surgeon I should be able to resume most activities about six weeks after surgery. That’s next week but if the stitches are still there or there’s any bleeding I’ll have to put off swimming a bit longer. At least I’ll be able to start going to the gym again and working off some of the flab I’ve accumulated during my enforced idleness.
The graft is still looking good, as you can see in the pictures here. My cheek has now completely healed over and the two stitches have disappeared. The scarring in my cheek is still a little bit prominent but I know that will gradually go away with time.
Some of the stitches in my penis seem to have already fallen out, some of the others look looser. I’ve sent an email to the surgeon asking when I can resume various activities (exercise and sex, for example) and if I’ll be allowed to swim.
I’m free of catheters!
After a short wait at the hospital the surgeon removed all the dressings and removed both catheters. There are some before and after pictures here.
So it seems like the graft is looking good, all pink and healthy. The surgeon was initially a bit concerned about infection because of the whitish stuff around the edges but there’s no irritation and she decided it’s just the usual result of having a catheter in and no washing for a week.
Now I can pee sort of normally. I have to sit down and the pee either shoots along the underside of my penis or dribbles down my scrotum but for the first time since October I can actually pee.
I also realised another unpleasant part of not being able to wash properly for almost three weeks, the head of my penis was covered in smegma. Fortunately it was quite dry and not smelly. A quick wash fixed that problem.
My next visit to the hospital (barring unforeseen developments) will be in September, to assess the graft before the second-stage surgery a month later.