I had HIFU!!
I didn't end up finding any gay men who had undergone the HIFU treatment, but I've now had it myself and wanted to share my experiences from the first few weeks in case it would help anyone else decide what treatment option is best for them.
I was very happy to have the HIFU treatment and the decision I made (other options were brachy, prostatectomy and radiotherapy). I'm in my 50s and my goals were to get rid of the cancer and limit the side effects.
Day 1 (Day of the treatment)
On the day itself I was allowed no food from 6.45am & no water from 11am. I was given an enema beforehand to clear everything out - which did the trick. The procedure was down for 4pm but was delayed til 5pm ish. Wheeled down for the anaesthetic, chatted for a bit and was out...
I woke up 7pm ish starving! Told everything went smoothly and stayed overnight, catheter in… it didn't feel too bad … it just felt like my bladder was full all the time. Blood pressure, oxygen etc all good. No pain.
I finally had some food (soup & sandwiches) & my partner visited and I felt good.
By 10pm still no pain, so didn't need any extra meds than what they would have already given me. My bladder still felt very full & my uretha slightly sensitive when I move position in bed….also some minor leakage, but no big deal. I went to sleep around midnight.
Day 2
I woke in hospital around 2am from mild stomach cramps, so I called the nurse around 3am as it was getting worse. He gave me Paracetamol pills & said cramps are expected (i.e. bladder spams because of the catheter) and confirmed I was already given Boscopan earlier when unconscious. More Boscopan injected 3.20am & it started to ease by 3.30am. Fell back to sleep 'til 8am ish. Woke up with an erection...weird...as that was not what I was expecting...but hey at least it's working lol.
Had breakfast and no recurrence of the pain/cramps. A Urology nurse gave me instructions on catheter care with la eg & overnight bags & made appointment for it to me removed (on Valentines Day!). I emptied the urine bag myself for the first time, which was very easy. I was then discharged around noon with lots of drugs & pad pants in case of spillage in Uber (none occurred).
Made it home ok & all good and started taking medicine as prescribed:
- Paracetemol
- Ibuprofen
- Tamsulosin
- Omeprazole
- Trimethoprim
- Solifenacin
- Laxative
Over the course of the day my foreskin against the catheter was really irritating, almost wish I was circumcised (almost!). First night at home with the overnight bag.
Day 3
I had a good sleep despite the overnight bag, but all morning I felt like I needed to poo and was worried about straining and peeing normally with the catheter in. I had some of the laxative and anti-spasm medication and finally ending up poo-ing ok a few hours later (first time since the enema in hospital).
During the course of the day I found it really hard not to pee normally when going to the loo. There was also some blood in my pee. I also got used to pulling my foreskin back to stop the irritation against the catheter.
Day 4
Today I had some swelling and bloating in my lower abdomen area, which remained all day, but it really was ok ...more of a discomfort than any pain. I was able to poo again after taking the laxative
I removed the urine leg bag (as now after 48hrs) completely and started using the tap instead - all ok. Then popped the overnight bag back on when I went to bed.
(By the way the whole time I had the catheter in my partner slept in another room as I was paranoid he'd get his foot caught in it and yank it out lol).
Day 5
I was woken up around 3am with minor pain in my lower abdomen/pubic region. I took the opportunity to empty the night bag, revert to the tap and took some Ibuprofen to ease the discomfort....but it lasted all morning and backache came on too. It was all clear by lunchtime and a I felt really good for the rest of the day.
Day 6
Today was pretty uneventful and for the first time I felt very tired. I was pooing normally without any help from the laxative but had developed a very strong urge to pee normally despite the catheter. It was hard to fight that urge.
Day 7
Last night was the first time I slept right through, Woke up, poo'd normally...was quite tired all day and still had the strong urge to pee normally.
Day 8
Much the same as the previous day. Often getting the urge to pee normally. By now I really wanted the catheter out.
Day 9 (Freedom day)
I got an Uber back to the hospital to have the catheter removed . The actual removal was a weird feeling ...not painful... and it was all over before I had a time to think about it.
I was so happy to have the catheter out and also pass the Trail Without Catheter (TWOC) ....where you are made to drink water and empty your bladder normally.
I was shown how to self-catheterise, given some supplies and left hoping I don't have to use them.
Day 11
So far I haven't had to self catheterise. My erections have been normal as before HIFU and I even managed to masturbate ok ...but there was no ejaculation...but otherwise felt normal.
Day 16
I'm still taking all meds as prescribed, had no major problems to be honest. Some very minor discomfort pops up from time to time...but is nothing. It's definitely all working down below ...peeing ok, pooing ok....and when I masturbate a small amount of semen does ejaculate ...which is a bonus as I was led to believe it would be dry.
I started to venture out the house - 20 mins walk each day.
Day 19
When I pee some "bits" have been coming out which was a shock at first ...but I'm curious now to see how much comes out ...and my semen when I ejaculate is now containing blood similar to what happened with the biopsy.
Day 20
All in all I'm very happy with how everything has gone with my HIFU treatment, how I'm recovering and the potential lack of side effects.
I've booked in for my follow up PSA test at the 3 month mark so fingers crossed it's got rid of the cancer.