The HIFU procedure was July 24. It's been about three weeks so figured I'd share some updates.
pros:
-Procedure was relatively short, a few hours. There was soreness after but pain level was mild to moderate..mostly in the groin area and in the penis/urethra. A supra pubic catheter was placed to allow for urination.
-Lots of bloody urine for days...and prices of either tissue or clotted blood often come out in bag or thru urethra.
- was physically able to ambulate and even go to work about six days later
-no major erectile dysfunction...just less robust
Cons:
-they said I'd have catheter in for a week...it's been three ith more to come
-the urinary retention is large (145ml) after peeing. Extremely uncomfortable and feels like constant pressure /pain/discomfort. Kind of like having a full bladder with someone stepping on your lower belly simultaneously.
- the dysuria is not getting much better. Urge incontinence and burning. Sucks.
So that's where I'm at now...going back in next week for more tests and hopefully catheter removal.
Will update everyone soon.
{50y, Gleason 7 one side Gleason 6 other, PSA 7ish at time of treatment, 11 of 14 cores positive}
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I'm no kind of expert on any of this but it seems conceivable to me that you are suffering from two problems - damage to the prostate and possibly some surrounding tissue caused by the HIFU procedure, and inflammation attendant upon that damage. Both can cause pain and the inflammation can swell the tissue around the urethra making urination difficult.
If that's what's happening, I imagine it could take quite some time for the healing to complete. I found that the inflammation caused by my radiation procedure took two months to start noticeably improving and five months to fully resolve. In the meantime, perhaps ibuprofen will help. It both reduces pain and reduces inflammation.
If you've tried two ibuprofen's (400 mg total) without much effect, try three (600 mg). Even higher doses of 800 mg might be possible though I found that that upset my stomach where 600 mg did not. Go easy on the repetitions. Don't exceed the recommended daily dose of ibuprofen. But if it works it can be a great help to get relief for just four or so hours, between bouts of pain. Some pain every day can seem tremendously easier to handle than constant pain every day.
As always, before taking any medical advice from a schmo like me, you would be wise to ask your doctor if this is a good thing to do.
I suggest also asking him about prescription drugs. Flomax (generic name tamulosin) can relax tissues bearing down on the urethra and ease the urination difficulties. Opiates are, of course, a possibility. But I have personally gotten more benefit, and far less harm, from ibuprofen than from opiates.
Thanks so much for sharing your experience. Sounds like your recovery process is a little longer than expected but going in the right direction. I wish you a full recovery.
After HIFU my cath was in for about 16 days. I never saw much tissue in the bag. All was great when cath was removed for a couple months, absolutely no issues, then I got a urethral stricture from debris and needed a TURP. With your dysuria, better go on anti-biotics which might be why it burns. You might have some blockage either from debris or scarring tissue from the prostate, which is why you have so much retention. This is how my blockage started out.
I had that surgery Oct 2016. I had to wear that catheter for 4 weeks. Had nasty bladder spasms when pooping. At times it felt like my bladder was trying to expel a foreign object -- the catheter. Felt that weird visceral pain if catheter hose was inadvertently tugged on. Could your catheter be clogged up? I had that problem one time with a conventional thru-the-penis catheter. I noticed that the bag hadn't collected any more in the two hours since I had emptied it. Went to the ER. The nurse used a big syringe to push fluid into the bladder and presto, the bag started collecting again - the clog had been cleared.
The catheter was removed a few days ago and the amount of retained urine in bladder decreased. So glad because I had those visceral bladder spasms and constant discomfort. Now I'm hoping the hole heals and I can start lightly working out soon. As you know, I have another 2 months or so before they check my PSA to see if cancer reduced enough. Was yours whole gland or partial? Are there any lifestyle /supplements /prescriptions that you currently take to help?
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