Almost pure blood and blood clots in urine

@so1frustrated, I’ve had you on my mind today. I hope that you are feeling okay in spite of all of that is going on. I know that you are so disappointed that the antibiotic did not give the results that we all wanted for you. My prayers will continue for you and for your medical providers that you will get to the bottom of this. And that a course of treatment will follow.

What do you plan to do between now and your May appointment? Has your urologist offered any treatment or follow up between now and then?

Sounds like some form of Amyloidosis to me, perhaps Gelsolin. That is what I went through.

Karl, could you please explain this to me in clear laymen's terms? I would like to understand so we can get a better direction. The bleeding is increasing again with tiny clots. I am waiting to here from the hospital as to when they will get me in for CT scan with contrast, a Urogram. It is acting so much like an infection but no bacteria is showing up. Thank you for your response and understanding! Please know that I can only do what Medicare covers as I am low income but not low enough for assistance.

Rosemary, thank you so much for your continued prayers, and I am praying in agreement with you, and also for a miraculous healing that is possible. The only thing urologist has offered and provided is a prophylactic Nitrofurantoin mono 100mg to take at night to hold off further infection; however still do not think had enough of cephalexin to eliminate but am just monitoring blood in urine for now and praying. Seems that the worst of it comes out when I get up for the bathroom during night (get up maybe 2x's night) and first thing in morning, then looks better during day. It was "bloodier" last night than has been but not as bad as last round and praying that it does not get that bad especially not bad enough to produce clots again. The last clot I passed did halt my stream for a couple of seconds but thankfully came out. So for now getting on with life, praying, and self-monitoring. If it starts to get alarming again I will call Urologist and try to get in (their office however is over an hour drive which I have to have my companion, who is physically disabled, drive me....being autistic I cannot handle driving in traffic and urologist center is in Virginia Beach). If they don't respond I would call my NP. I did find out she did a cytology evaluation and apparently came back with atypical cells again, but I believe that can also be from infection. So puzzling, but trusting in God to get me through. Thank you so much for your prayers and support. Have a blessed Resurrection weekend!

I think @peach414144 would also be interested in joining this discussion. She too is currently undergoing testing and cystoscopy to confirm or rule the diagnosis of bladder cancer.

Peach, when will you have the next cystoscope? What is your doctor suggesting to help with the pain?

I will NEVER have another cystoscope. Just called the infectious disease doctor and they have the results in for the urine CULTURE test but will not disclose until the next visit which will be April eighth. This test will reveal cancer. Who needs it but perhaps at last a reason for the pain and discomfort for too many years. The doctors do suggest big time pain medicines and I have taken them but they do nothing for the pain so I stopped. Thank you for your caring. I will let you know. One more thin I want all to know: Whether the pain is more for one than another it is still PAIN and all should be considered for their agony and suffering.

@peach414144, I'm glad to hear that you don't have to have another cystoscope at this time and that the urine test will help determine next steps. I'm sure that you team is working hard to figure that cause of the pain and to help get answers. While April 8 is only a week away, it's a long time to be dealing with pain. It sounds like you are really in agony. What do you do to help relieve the pain? Are you able to sleep?

@peach414144, @so1frustrated, I am aware that this has been a busy and a difficult week for the both of you as you are undergoing more tests and are waiting for a diagnosis.

The waiting must surely be zapping your energy. I had a cystoscopy once, and although it was more frightening that anything else, I found the urologist to be extremely kind and understanding of my fears.

Here is my purpose of this message to you-
I can understand if your minds are consumed with your upcoming tests and diagnosis. And in the midst of the interruptions and the new improvements on Mayo Connect, I want to be certain that you can connect with each other in this discussion group as you focus on yourselves and your medical needs.
@oldkarl - Do you have anything that you might want to add to your reply to @sofrustrated about your mention of Amyloidosis'?
_________________________
Note - When your minds calm down and you are able to focus on the new improvements on Mayo Connect, here is where to go:
I am here to assist if you need me.

Blogs > About Connect: Who, What & Why > Improved Homepage: Your new Connect home base
https://connect.mayoclinic.org/blog/about-connect/

One must realize that each person has a different shape and curvature within their body parts and that can add to the extent of the pain that is experienced. Any which way it is looked at it is outdated and dangerous. Until people can realize that with an open mind discussing this subject can be vey mentally hurtful.

@peach414144, do you mean discussing this with medical professionals or are you referring to this discussion and talking about cystoscopy here? If it is upsetting you, I can help unsubscribe you from this discussion. Just let me know.