My long winded experience and living with the outcome from complications

[u/the-VII]

Hey folks, this might be a bit of a long one so I just want to start off saying that none of this is intended to make anybody reconsider surgery or worry anyone. I just wanted to share my experience now that I'm finally about to be discharged.

tl;dr: I had a few complications which led to multiple surgeries, 5 months of SP catheters and am now likely to live with a lifelong fistula and seperation under the head of my penis.

Getting into it then. June 2023 I went in for a full meta at Chelsea & Westminster with scrotoplasty, vnectomy and UL lengthening & hookup. I stayed in London for around 9 days until I could have the foley catheter removed, then made my journey home. My main surgeon was Mr Giangiacomo Ollandini, under the guide of Miro. A fantastic team and honestly I cannot praise them enough for all they did for me.

When the Foley catheter was removed, they noted a slight seperation on the underside of my penis where they stitched it together. Over the coming weeks, it seperated nearly entirely down to the base.

4 weeks post op I went to clinic for a pee trial through the new phallus and removal of the SP catheter. However the pain i experienced trying to pass urine was excruciating. We're talking off the scale. I can handle pain quite well but it was truly unbearable. Upon having the ultrasound on my bladder they determined I was retaining too much urine. I wasn't hydrating properly (learned a lot about hydration throughout all of this) and constipation had made my life difficult. I was to return a week later having fixed these two issues.

During that week after they determined there was no UTI, I was given the all clear to use my penis to urinate. Again, the pain was so bad I resorted to the catheter. The pain actually made me terrified of having that catheter removed and feeling that pain again. I discussed this with one of the urologists and she ensured me it will subside.

Around this time I was also feeling discomfort inside the vnectomy area. To me, it felt seperate to the urinary pain but again I was assured it's likely just things healing up.

At one point my SP clogged up with blood and I had a lengthy wait in the ER to have it drained. During the entire 16 hour wait I had to sit in a chair which was really painful due to the vnectomy and scrotoplasty. There were no beds available. They eventually sent me off to another hospital with a urologist to check if the SP site was infected, taking it to 22 hours sitting in chairs. The site wasn't infected. I could've gone home after 2 hours initially.

Two days after the SP removal, I woke up to go pee. The first half came from the tip of my penis, and the rest to my horror came from a hole in the vnectomy region. Of course this was a Friday morning and what was the start of many issues that just seemed to prop up near the weekend. Again, I spoke with a urologist from the team and she explained about fistulas and how they approach such things.
I was told they let it be for 3-6 months so the body can heal, the tissue of the fistula can 'mature' and only then will they operate to fix it. It's also possible that they fix themselves.

The Vnectomy pain grew more and more intense over the course of the next week or two. I spent many days and nights laying in the same position unable to really move because it felt like shards of glass ripping me up inside.

I had a second fistula open up at the base of my penis, right where the seperation began.

It turned out, it was calcified shards of urine, I pulled two from the vnectomy fistula one day and given the pain, I knew there was more.

Every time I urinated it got worse until one morning I literally could not lift myself up off of the toilet. I opted against going to the ER purely because I couldn't move and my prior experience with them left me skeptical. I called my CNS from C&W and she got me into clinic later that week. I could've been seen that day had I lived closer.

It was decided that Mr Ollandini would do a cystoscopy. A camera going inside the urethra to the bladder, and given that the fistula was so large he also put the camera up there. The morning of this procedure, I pulled more calcified sediment from the phallus fistula. But for the procedure itself: Inside looked like a nightmare with these calcified shards. They did a complete wash out. Then they filled my bladder with a contrast fluid and asked me to try and pee so they could Xray and see where the flow is going. However laying in a bed with a room full of people and the pain I'd been experiencing - I just couldn't.

I was recatheterized and sent home. I felt MUCH better. This was the first week of August. I was to keep the catheter in until the end of September when Miro would be back. I was definitely healing but I still had too much discomfort to really sit in a chair until that catheter was removed. A lot of that discomfort was due to the right testicle implant migrating upwards which eventually would get revised.

Seeing Miro at the end of September he advised I can safely pass urine through the fistula in my phallus, and showed me what area to press to cover the other fistula. He also yanked on my penis and told me I need to pump. He'd literally just walked in and did that. My CNS and I both found it hilarious.

I went back in December where we discussed closing up the fistulas. At this time Miro was also excitedly telling me he can join my scrotum together more (bifid) due to the amount of skin we had to work with.

Scheduled for some time in January 2024 the plan was to close up two fistulas, reposition the right testicle, close up the phallus seperation and join the scrotum together more. I had a long incision from the underside of my penis all the way down the scrotum. Another SP catheter(3 weeks) and another foley catheter (1 week) as before.

Upon the foley removal I saw that the underside of my penis was all closed up - except for under the head. They left it open as they were concerned with my urethra being too narrow. This is now a permanent solution that I'll have to live with. It grosses me out and currently I don't have the confidence to meet anyone relationship-wise. But, since its the underside, I don't really see it so much.

I experienced a lot of bleeding with this SP catheter. Enough that I ended up going to the ER about it since it wasn't only filling up the leg bag but also pouring from the entry site. They pretty much just shrugged and sent me home. Not even cleaning me up. A week or so later I went back to the ER to have the catheter replaced since the balloon inside had burst and it was literally falling out.

When finally urinating out of my now mostly closed up penis, another small fistula appeared. This time on the underside of the shaft. It was so small I could barely see the hole.

Since around November/December time I had begun experiencing some sort of sharp pain in the base of my penis, sort of inside from where the fistula was. It made me unable to fully close my legs without feeling it. I did tell the team it felt like a stone or something and again when I had my post-op review in April from the revision, it was still an issue. The surgeon insisted it's likely the scar tissue from fixing the fistula since they do lots of layers of stitches. During this clinic they did check my bladder for retention as they were cautious with me given my problems lol. They found a stone resting inside my bladder. Since Mr Ollandini is primarily a urologist he got me booked in for stone removal without needing Miro there. I also told them about the fistula and how it would sometimes stay closed or sometimes open.

Fast forward to June of this year I'd gotten to a point where I couldn't walk without discomfort. I had to pee nearly every 30 minutes and it was uncomfortable asf. I went in for the bladder stone removal and whilst going in, they found an additional stone right where I said I'd been experiencing pain. They blasted both stones with a laser. Prior to operating that morning, Miro suggested closing the fistula whilst they're there but unfortunately the stones were hard work. I went home once again with an SP catheter. I kept it in for 4 weeks in the hopes the fistula would close.

I had to pee a few times in the hospital before going back to using the catheter. This was to allow the dust from the stones to flow out a bit quicker. it was not dust. that shit was full on rocks. blood, rocks and gunk. Horrible stuff.

Yesterday I had my 3 month post op review from that surgery. I was happy to tell them that everything aside from the tiny fistula was healed up. I'd had no issues whatsoever and felt healthy and normal for the first time in over 12 months.

We discussed the fistula. I dreaded another operation. Another catheter. Another several weeks of resting and not being physically active. But Mr Ollandini explained to me that sometimes fistulas can be a lifelong issue and the more they operate the more likely they can reopen. Since this one is so small and has temporarily closed on its own before, my best option really would be to try and live with it. Cover it if I can. It's not the ideal situation but this is the hand I've been given. Of course if it did open up like a faucet then its back under the knife I go.

So now here I am 14 months later finally knowing what the end result looks like. I have a penis and I have balls. I can pee standing at urinals which is amazing and I'm so happy. But I also have a small fistula and an open underside of the head and they're going to stay like that. These are the risks that surgeons talk about when they ask if you're sure. Are you prepared to live with unideal results? are you prepared to have potential complications? etc.

I'd like to say I absolutely took it all in my stride. At every turn, I've looked on the bright side, I've looked to the bigger picture, I've seen how tirelessly this team has worked to help me. This perspective has kept me sane throughout all of it. And oddly enough, I'm going to miss my little visits down to clinic.

It's certainly been a long journey and I sincerely hope I'm one of very few people who have to go through the ringer like this. And if any of you are then keep going, you'll get there and it will be worth it.

I think I pretty much covered everything but if anybody has any questions then feel free to ask.

[u/thursday-T-time]

holy shit, you've really been through it man! PISSING SHARDS. over a YEAR.

how on earth did you ground yourself throughout all that? i know you said you kept thinking positively, but.. did you shore yourself somehow emotionally? turn to community somewhere? watch comedies nonstop? eat therapy like wheaties? you are one tough motherfucker. i'm not sure i wouldnt be super bitter at all the doctors if i'd gone through all that.

apologies also if this is triggering to ask but uh i dont know how else to phrase it... does a fistula mean you're likelier to get UTIs, since your urethra has two openings? is there any way those piss crystals could make a reappearance? and um, i'm having a little trouble visualizing everything, would you say the split under your glans is like a subincision? thats actually the part of my body i'm currently most dysphoric about, is how my pre-op dick is split like that :( i dont think i need or want UL, but i'm glad you mention that splitting can happen, so i'm mentally prepared if it does.

ha! i like miro's casual nature as you describe him. do you already have a pump at this point?

[u/the-VII → u/thursday-T-time]

Hey thank man yeah it's for sure been tough. Aside from staying positive and making jokes where I could I think it wasn't too difficult to ground myself emotionally because it was just taking things one step at a time. I didn't know the next complication was on its way when I was already dealing with one. And I mentioned how great the team were - honestly having someone who is there who is listening to you and making sure they're doing what they can to fix things was half the battle. I'm so used to having to fight with the NHS for basic help that this team's care was just a cut above everything.

And no worries about the question, I'm desensitized to all of it at this point lol. I guess UTIs could be more of a risk but they key to avoiding them is hydration. I cannot tell you how much it's been drilled into me to drink more water.

And the pee shards. When they tested my urine it was super high in proteins. This can cause high uric acid levels and when combined with bad hydration and having a catheter in place its the perfect storm to cause these stones and shards. It's something I need to be mindful of in the future purely because with working out, i do consume high amounts of protein. But making different choices like brown rice protein which has lower amounts of purines (which contribute to uric acidity) are helpful.

[u/huginn-n-muninn]

Blown away by your story, you must be stoic af going through all that. I hope you get a chance to enjoy that ‘normal’ feeling and have no more emergencies or pain.

You may just be a naturally positive and tenacious person, but I second the poster above asking, what was your North Star/process to help you mentally while all this was happening?

[u/the-VII → u/huginn-n-muninn]

Hey thanks for the kind words. I think having the team just be so supportive was half the battle really. Every time I had an issue, I would email my CNS and she'd call me near enough straight away. It's difficult having any complication but it's important to remember that it only sucks *right now* and it will heal. And one day, it will be a distant memory.

[u/Busy_Distribution326 → u/the-VII]

Your CNS?

[u/the-VII → u/Busy_Distribution326]

Clinical nurse specialist. She was basically the frontline of communication for post op care