Bleeding just won’t stop anymore

[Madbeach]

Hubby has been passing severe blood loss via urine and has a consult next week to discuss hyperbaric oxygen therapy. His current urologist doesn’t seem to care so we have an appt at the end of Sept with another urologist. After researching radiation cystitis (which is what his current urologist feels that is the problem), I’m not seeing much success with the few treatments that are available. Has been bleeding sporadically since January but recently, the bleeding hasn’t really stopped. Radiation in 2010 and again this July but the bleeding started prior to the most recent radiation. Anyone else have this problem that had a successful treatment?

[tango65]

Is he in blood thinners? Are his platelets OK? Does he take ibuprofen, aspirin, naproxen or similar meds (NSAIDs)? What is his creatinine? Renal ultrasound?

[Madbeach in reply to tango65]

Although his cardiologist wasn’t thrilled, my hubby stopped the Plavix and Eliquis months ago (and the bleeding has gotten progressively worse even tho he’s off of them) due to the severe bleeding and now only taking low dose aspirin that he must be on due to A-Fib and leg stents. Has had bloodwork and scans of all body parts and all appears to be ok. My sister is a nurse and explained that a little blood in the urine can look like your bleeding to death, which I understand, but his catheter collection bag is almost black there is so much blood and clots. We’ve taken photos and showed the urologist, and it’s everyday for days, then one day the urine drains clean then right back to all the blood. Hubby is so disgusted at this point, he’s ready to ask if bladder can be removed. Yes, he would wear a bag forever, but he’s wearing one now with having the catheter in.

[CJ4J]

Yes, my husband is going through that right now. Just had renal scan and a CT scan. The ureters are inflamed and he has an obstruction to the kidney. They also believe it's from the combination of Lut-177 done in 2019 and pelvic radiation in 2020. He's had pain for 2 months and urine looks like cranberry juice. Surgery is set to do cystoscopy and take pictures of bladder, ureters and kidney. Then they are going to place a stent to his kidney along with biopsies. This is the most trouble he has had in 5 years. Very painful. They also suggested doing hyperbaric oxygen therapy.

[Hidden]

An uncaring urologist? Switch ! I had an uncaring callous uro myself . He let me go into k failure while awaiting a biopsy.? This lead to two years of tubes glories then stents. But , I pulled out and can pee again . I wish your hubby the same. The bleeding is hard on morale . This needs a fix ASAP. There has to be something to be done? Im hoping that others can steer you . It’s alarming stuff to see blood. Once over this hurdle you can then be happy beach once again . Personally I couldn’t be a urologist… alot of misery they see. Some are callous to it. Hope you get a better one? 😩✌️

[tetech]

Dad took Trental (Pentoxifylline) 3x a day for radiation scarring and it eventually healed it. It softens blood cells so they can go through smaller capillaries, so it could make bleeding worse.

[Miket218]

I have the same problem but to a far less extent. Blood comes primarily after I’ve been sitting on a hard surface such as a wooden chair for an hour or so or driving for a few hours. I have an artificial urinary spinchter and feared it was eroding. Two weeks ago my Uro did a cystoscopy and concluded the bleeding is caused by radiation damage to my bladder, He said it could stop in anytime or it could persist for the rest of my life. He did not mention any treatments but that may just be because mine is not nearly as severe as our husbands. Best wishes to you both.

[Mattj3rd]

Yes - I had this problem about 8-10 years after radiation therapy. My condition was initially dismissed until I had to be hospitalized because I was anemic. I had blood transfusions when in the hospital which initially stopped the bleeding. I then did a treatment regimen of hyperbaric oxygen treatment daily for maybe 6 weeks. This helped. I will occasionally have a bleeding episode, maybe 3-4 times a year but it usually resolves within 12 hours. You do need to find someone to take this seriously because of the blood loss and possible blood clotting that can make it difficult or impossible to urinate. Best wishes for success with hyperbaric treatment.

[Madbeach in reply to Mattj3rd]

Thx for your reply. We saw the doctor today (consult) for the hyperbaric oxygen and he went over some side effects and other info and mentioned that cancer needs oxygen BUT no real evidence for or against hyperbaric oxygen therapy causing cancer to grow or spread but of course my ears went up and now I’m trying to research to see if there is any legit sites that have info on this. My hubby is going for a second opinion next week before he commits to the hyperbaric oxygen.

[dagreer]

I had this problem for years - now and then. Aspirin / Ibuprofen and a lot of fish oil kicked it off when I was lifting weights. There was damage in my bladder from radiation treatment and the damaged capillaries would let loose. My urologist was an old school guy - I had no idea what we has going to do one day. He stuck an electrode on each of my legs and stuck a tube/probe/camera up into the bladder. He actually cauterized the damaged capillaries while I was fully awake. When I say it hurt - man did it hurt. It felt like I was being burned on the inside of my bladder. I was reading that they put you to sleep for this - wow. But it did fix the problem. Sometimes ignorance is bliss because if he had told me what he was going to do I would have probably said no - especially after doing the research.

[Blueslover]

Hyperbaric oxygen helped me a lot

[j-o-h-n]

'so we have an appt at the end of Sept with another urologist. ' Geezamacrip..... end of Sept? Why not post your location and ask if anyone would be able to recommend a better Urologist in your area and SOONER!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 08/30/2021 10:31 PM DST

[Madbeach]

As luck would have it, the new urologist called today and changed our appt to 9/7/21. So we feel good about that.