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.

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.

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.

Waiting for follow-up appointment

I never got a reply from the surgeon to my message about my wound reopening. It closed up again within a day or two and now the wound is looking pretty good, it’s not even very visible any more. The odd sensations from regrowing nerves now seem to mostly be in my foreskin instead of along the wound.

I did get a letter with a date for my follow-up appointment. Seems like they’d forgotten about it until I reminded them, again. With it being peak summer holiday season it was apparently impossible to give me an appointment in the period they originally told me (4-6 weeks after the removal of the catheter) and I’m going on vacation myself so the appointment’s not until the end of August.

Updates here will be sparse until the appointment, unless something interesting happens. I’m really hoping that nothing interesting happens.

Wound trouble

I got a bit of a fright on Friday night when the wound on my penis reopened. I was peeing before going to bed and I felt something wet on the underside of my penis. I thought it was maybe just sweat but when I moved my hand there was blood on it. My shout of surprise brought my husband to the bathroom and we had a look.

It turned that about 1 mm of the wound at the end furthest from the scrotum had opened up and was bleeding slightly. Apparently this can happen with wounds as the collagen that forms the original scar is replaced, it’s called dehiscence.

We washed the wound and stuck a dressing on it and by Saturday morning it was looking much better. Now it looks the same as it did before it reopened. We’ve been using steri-strips to try to reduce tension on that part of the scar.

I’m still waiting for my follow-up appointment, so I sent a message to the surgeon telling him about the reopening and reminding him about my follow-up. I’m hoping I’ll get an appointment before I go on vacation later in the month.

Six weeks after surgery

I got an email today from someone who’d found this blog and reminded me that I hadn’t updated in a little while (I tried to reply to him but there seemed to be a problem with the email address).

Things are going quite well. The wound is becoming less visible and also less sensitive, it’s now mostly just feeling kind of odd when touched rather than slightly painful as it was before. I get occasional random twinges of pain, especially in the part of the wound on my scrotum but I’m assuming this is all just part of the nerves regrowing.

Peeing still stings a bit sometimes but that seems to be getting better too. I’ve also tried some gentle sexual activity and that hasn’t caused any problems. The internal scarring/swelling is still causing quite a severe bend to my penis when it’s erect and that’s something I’ll talk to the doctor about at my follow-up appointment in a few weeks.

When I get a chance I’ll take some more pictures and upload them. I’m also planning a post with some of the useful studies and papers I found.

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.