Tag: urethrotomy

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.

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.

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.

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.

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.

The return of the stricture

Before the infection I’d had a couple of days of enjoying peeing normally, with a really strong flow. After the infection I assumed that the flow was being restricted by my swollen prostate. Once my prostate was back to normal it was obvious that the stricture had recurred within a month of the urethrotomy.

Reading the research on urethral strictures it seems that urethrotomy is often unsuccessful with strictures of the penile urethra, especially if they’re quite long. In some places they’re recommending doing urethrography to check the size and location before performing urethrotomy and in some cases going directly to urethroplasty instead.

At my next visit to urology, three months after the urethrotomy, the doctor was determined that the standard treatment was to repeat the urethrotomy. Fortunately I’d prepared and was able to insist that all current research indicated that the first one had been pretty much doomed to failure and any successive urethrotomy had almost no chance of success (due to the location and speed of recurrence). After trying to scare me with warnings of the dangers of urethroplasty he finally gave in and agreed to refer me to a more senior urologist.

After urethrotomy

So a week after the surgery I had the usual problems that guys seem to have with catheters but that nobody bothers to tell you about.

Being woken up during the night when erections meant that my penis simultaneously tried to pull out the catheter and scraped it over the inside of my urethra was a new experience, and one I could have happily done without. After a couple of days I learned to tape the catheter into a position that minimised the unpleasantness.

I think that night-time erections were a particular problem for me because my penis changes a lot in size between flaccid and erect. So an erection meant pulling an extra 10 cm or so of catheter over my wounded urethra. It was also a latex catheter and they seem to be stickier than the other types.

During the week with the catheter I worked from home and tried to avoid walking around too much. I never did find a position for the tubing that didn’t become uncomfortable while walking.

Having the catheter removed was very easy, although slightly delayed by a massive failure of the county’s healthcare IT system that morning. The nurse deflated the balloon and pulled it out smoothly, all I felt was a slightly odd sensation and it was done.

I went straight back to work afterwards and discovered that the catheter had left my prostate a bit tender, so I needed to use a soft cushion on my office chair.

A few days later I started feeling like I had flu or something. Several colds and flus were going around the office at the time but my husband insisted I go to the emergency room and it turned out I had a fairly severe urinary tract infection. By the time I was admitted to the urology ward, around midnight, I was sweating profusely and feeling pretty grim.

They kept me in the hospital for three days while the antibiotics started to take effect. When I was discharged I had a meeting with the doctor who’d done the urethrotomy. I was a bit concerned that I hadn’t had any night-time erections for a few days (which was probably just due to being really ill) but he just casually said that it could be a complication of the surgery and made a weird comment about the next step being anastomosis and that that would likely cause shortening of the penis. It was an odd thing to say both because anastomosis isn’t at all a suitable surgery for strictures in the penile urethra and because it had nothing to do with the question I’d asked.

After a week of recovery I could concentrate for long enough to go back to work, although the infection had settled in my prostate and needed another couple of weeks of antibiotics to be completely rid of it.

Urethrotomy

Summer holidays are a big thing here in Sweden. Most people take four weeks off in a block and that includes hospital staff. I had no chance of getting my urethrotomy done before the summer holiday period started and we’d already booked holidays for most of August.

So when I got back from vacation at the end of August there was a letter with an appointment for outpatient surgery in just over a week. Somewhat inconveniently it was going to be at a small hospital (that seems to exist largely for political reasons) about 60 km away, instead of the county’s main hospital that’s a 10 minute bus ride away.

I’d still had almost no information about the procedure, apart from some very generic instructions about not eating or drinking and washing with special disinfectant sponges before the operation.

On the day my husband drove me to the hospital and we sat and waited. I had a quick chat with the surgeon, a nurse and the anaesthetist and got changed into the lovely stockings and nightgown. Then I waited some more.

Eventually I was called into the operating theatre, got myself settled on the table, hooked up to various machines and drips and was discussing the Scottish independence referendum with the surgeon when the anaesthetic took effect.

I woke up in the recovery ward, feeling pretty OK but still a bit confused. My husband was allowed in and the surgeon came in to tell me that the operation had been a success. He said he’d had to cut away 5 cm of stricture, although it later turned out that he hadn’t bothered to record this anywhere.

Once I’d had a sandwich and some (horrible) coffee I was judged fit to go home. They’d put in a foley catheter during the surgery but I didn’t really get much in the way of instructions of supplies for looking after it. I was told to make an appointment with the nurse at my GP to have the catheter removed after a week.

First investigations

First I got called up to the hospital for a CT scan, to make sure the blood wasn’t coming from my kidneys. It wasn’t, so I got an appointment at the urology clinic. By this time it was the end of June.

Before my appointment I had to record frequency and volume of urination and (separately) how long the first 100 ml of urine took. My trip to the clinic started with uroflowmetry, peeing into a machine that records the volume of urine over time. That showed that there was definitely something wrong, the flow was way too low.

The doctor then did a cystoscopy, or at least tried to. He only got a couple of centimetres in before hitting a blockage, with only about a 1 mm passage through it. That explained the difficulties.

He then said he’d have me scheduled for a urethrotomy (DVIU), without really explaining anything about the procedure. He seemed more concerned about the difficulties of scheduling it, with very little time left before everyone went on their summer holidays, than talking to me. Unfortunately that turned out to be a pattern in the urology department. They didn’t do any further investigations of how long the stricture was.

Introduction

Like a lot of guys, I’d noticed the force of the flow when I was peeing decreasing over the years. I’d assumed it was just a normal part of getting older. In May 2014 it finally got to the point where I thought there must be something wrong. Peeing was becoming painful and the final straw was when I noticed a bit of blood.

It turned out to be a urethral stricture, scar tissue narrowing my urethra, and that diagnosis has so far resulted in lots of visits to the hospital and several surgeries: a urethrotomy (plus two failed attempts) and two buccal mucosal graft urethroplasties. In particular it was a stricture of the pendulous urethra, or distal urethra, within the external part of the penis. That seems to be quite unusual, especially when it’s not caused by disease or injury.

I’ve noticed that there’s not a lot of information out there about strictures and the treatments for them, especially from a patient’s point of view. So I’m writing this blog in the hope that it might be helpful for other guys with the same problem. If you want to get in touch with me you can use this contact form.

There are pictures to accompany some of the posts, but you’ll have to click a link to see them so that nobody unwillingly sees pictures of a penis. You can also find them in the NSFW category.