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Three years later

I’ve added some photos showing how my penis looks three years after the last urethroplasty (pictures from before surgery are here, if you want to compare). One of the most common questions I get from people contacting me through the blog is how the surgeries have affected the appearance and function of my penis.

I’d say there are two main differences in appearance:

  1. The underside of my penis used to have a prominent urethral bulge, that’s no longer there. Instead I think it’s a bit wider and flatter than it used to be.
  2. The sloppy suturing from the first urethroplasty has left some pretty visible scarring. It’s slightly less visible in real life than in the pictures (I blame the flash).

In terms of function I’m still keeping an eye on the urine flow rate. If it seems bad I’ll check using my Uflow funnel. Once every three to six months it’s been a bit too bad and I’ve had to a self-dilation with a catheter. Overall urination is fine.

As far as sexual function goes the only remaining problem is the lack of sensation on the underside of my penis due to the scarring. It’s occasionally a bit annoying but can be worked around without any difficulty.

Assuming there’s no significant worsening I can live happily like this without feeling any need for further treatment.

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.

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.

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.

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.

Follow-up visit to the hospital

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.

Foreskin problems

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.

Summing up my recovery from two-stage urethroplasty stage 1

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.

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.