Hello All,
Thank you for taking the time to read my post. I am a 33 year old male, and I am just not understanding what is happening to me nor if the doctors are taking the appropriate steps. I am sorry for the long post but wanted to check if anyone recognises themselves in my story. I wish you all the best.
2018 aged 25: Piece of blood in my urine, got antibiotics.
2023 aged 30: I urinated brown / black after the gym, was hospitalised for rhabdomyolsis for a week. Saw a renal doctor afterwards for a lot of blood test and nothing looked off
2023 aged 30: Painful urination and blood in the end of my urine, felt as if there were pieces of glass at the end my urethra. Went to the hospital, CT scan showed a small mass in my bladder. Went to the urologist and ended up getting TURBT. However, it was benign and he told me it was ectopic prostate tissue based on the pathology. He also told me that I didn’t need to come back anymore.
2026 aged 33: The past few years I have gotten more tired in general, I thought it was just my fitness level decreasing and because sitting behind desk all day long. I had a skin rash on my hands and my GP sent me to a rheumatologist, who is doing testing now but suspects I have an autoimmune disease though no test has shown that yet.
2026 aged 33: Had a day which started mildly but my urine become more and more frequent over the course of the day, up to the point I had to go every 20 minutes and with painful visible blood in my urine afterwards. I went to the A&E, they showed I had increased leukocytes, CT scan showing potentially a recently passed stone. I was sent to urologist, who did a cystoscopy which showed scattered red patches throughout my bladder and he suspected an infection. He said to come back in 6 weeks and then do biopsy if they are still there. Since then my urination was fine, until I again urinated painful blood today in the morning.
I a made an appointment with a specialised urologist in the UK. He said he agrees that we should wait a few weeks to see if the bladder healed, but that we do other tests in the meantime.
I don’t understand what this could be. Isolated / pure CIS seems to be possible with these symptoms, however I have been told that that would be extremely unlikely for me given my age and no risk factors. I have been unable to find anyone my age with pure CIS, in any research paper (IDENTIFY study for example) or elsewhere and that is just very confusing to me.
Hi Lookingforinfo2 and welcome to the group although sorry to hear what you have been through. It must be difficult not having a true diagnosis one way or another. It is uncommon for someone your age to have BC but not unknown. We have had several members here over the years in your age group. What was once considered to be an old mans disease is not true anymore as we have seen more and more younger people here. CIS is hard to diagnose by visual inspection alone as it looks very similar to inflammation. If nothing has changed by your next check then I think further examination would be needed. Best wishes.
