Tag: stricture

Visit to x-ray and more waiting

I had my x-ray appointment a couple of weeks ago. It seemed to go much more easily than previous urethrograms; having a suprapubic catheter makes it much easier to fill the bladder with contrast. Unfortunately it turns out that the urologist had only ordered a voiding cystourethrogram and not a retrograde one.

Cystourethrogram from early November showing how my urethra was almost completely blocked
Cystourethrogram showing my urethra almost completely blocked

That meant that there was too little flow after the stricture to fill the urethra. The radiologist initially concluded that there was a huge stricture all the way from the inner end of the graft right to the meatus. They looked at the pictures again, together with the urologists, and decided that instead it’s two very narrow strictures with about 5 mm between them.

Of course, it’s impossible to tell how long the outer stricture is, or anything else about the urethra after that point.

I’ve been communicating with one of the urologists by email and he seems oddly resistant to the idea of doing a retrograde cystourethrogram. The current delaying tactic is to ask a colleague in another county for advice. That of course means letters going back and forth in the post, so it’ll be at least another week before they hear back from him.

So it seems I’ll be stuck with the suprapubic catheter for quite a while longer. There’s basically no chance of getting anything useful done before Christmas now.

Here’s an animation from the cystourethrogram. You can clearly see how the urethra upstream of the stricture gets stretched by the pressure and how long it takes for the urine/contrast to get past the stricture.

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.

Added some new photos

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

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

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

Operation + 1 day (Wednesday)

I woke up during the night with a feeling of pressure in my bladder. The bag had filled up so I had to call a nurse to empty it. After that they started checking regularly.

I was woken again by an erection at about 05:30. It was very painful but it was a relief to know that things were still working. After a second one I was kind of scared to go back to sleep so I just read. Bright sunshine was already coming in through the windows at 06:30.

The nurses came around eight but kept being distracted by other patients. They told me they’d rearrange all my tubes so that I could get up but by then it was breakfast time. Egg, bread, cheese and ham and I even managed to drink the coffee once I’d let it cool down.

My re-plumbing was delayed again waiting for the surgeon’s round. When he appeared he told me it had gone well. The stricture was about 1.5 cm (as they’d seen on the urethrogram) but they’d had to repair about 5 cm of unviable urethra (scarring from the urethrotomy?). I asked him about the painful erections but he seemed a bit awkwarded-out. He wanted to keep me in until Monday for monitoring.

I eventually got a new dressing and better catheter bags and clothes. Had a wash at the sink, because my dressings mustn’t get wet. My scrotum was still quite purple. Click here for photos.

I had coffee with the young guy from the opposite bed, who’d also had some kind of urethroplasty, and the old guy from the next bed. It was quite nice to be up and about, even if I did have to carry my two catheter bags with me in a plastic bag.

My husband turned up for lunch, mine didn’t arrive until a bit later (slimy kalops and runny apple purée). We went for a walk around the hospital. Standing up straight was quite hard because my belly muscles are very tense and I was getting quite frequent bladder spasms.

I spent the afternoon reading, interrupted occasionally by nurses coming to measure me. I asked for a jug of water when I realised there wasn’t much urine in the catheter bags.

At one point I was sitting reading when all of a sudden an air bubble forced its way out past the urethral catheter with a loud cracking noise and a sharp pain. I called a nurse but apparently it’s normal. Another interesting new experience.

In the evening I got told off by a nurse for emptying my own catheter bags. Apparently they wanted to do it so they could record the amount of urine, but of course they hadn’t told me that. The nurse showed me how to inject the blood thinners and had me do it myself.

I got some paracetamol for pain during the night and it was time for bed. Still feeling quite bloated and crampy.

Urethrography and discussing urethroplasty

Before I could see the senior urologist he wanted to know what he was dealing with, so I got an appointment for a cystourethrogram (x-ray of the urethra and bladder).

They’d be taking two related x-rays, a retrograde cystourethrogram (RCUG) as they squirted contrast through my urethra into my bladder and then a voiding cystourethrogram (VCUG) as I emptied my bladder.

The radiology staff didn’t seem especially familiar with the procedure, so even with a large crowd coming and going and giving advice it took over an hour. They seemed to have used too much numbing gel; every time they tried to inject the contrast the catheter would pop out.

The RCUG was eventually successful but the VCUG didn’t work so well. I found it very difficult to urinate on demand while lying on my side and having not had anything to drink for a couple of hours.

My x-ray appointment was at the end of January but I couldn’t get an appointment with the urologist until mid-March, partly because I was away quite a lot during those months.

When I finally saw the urologist he was the first doctor I’d met in the urology department with any bedside manner and he was very open to discussing the options.

I’d used the time before the appointment to continue my research and I’d found that in the few studies that actually tried to evaluate patient satisfaction buccal mucosal graft (using skin from the inside of the mouth) did better than penile flap (using skin from the penis) urethroplasty. It seems that the cosmetic results are better, there are fewer problems with skin tightness and less post-urination dribbling with the buccal mucosal graft.

The doctor would have preferred to use a penile flap and was more familiar with the technique. I had an especially awkward moment lying exposed on the examining table when he told me that there seemed to be plenty of spare skin and I had to try to explain that that’s not the case when my penis is erect.

He’d already discussed my case with a colleague in another county who had more experience with buccal mucosal grafts and we agreed that we’d go for that option and that he’d bring in his colleague to assist with the surgery.

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.

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.