Almost pure blood and blood clots in urine

Posted by so1frustrated @so1frustrated, Feb 5 7:11am

Going through another episode of urinating almost pure blood (fresh looking) and passed a large blood clot yesterday. Have had CT scan and ultrasound and cystoscopy but nothing found so far. Also pain in left side/back that might be kidney pain. Anyone go through this? I have a call in to urologist and should hear back today. Also I had asked my NP for antibiotic, Cipro, which I took but on day 5 fresh blood showed up in urine again and I stopped. Asked for it in case of infection that might not be showing up. The last time I had gross hematuria and clots (and vomiting) the urologist's nurse saw me on emergency visit and prescribed nitrofur mac which appeared to clear it up, but started up again several weeks later. So frustrated and worried!

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?

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@colleenyoung

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?

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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.

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@peach414144

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.

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@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?

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@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/

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@rosemarya

@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/

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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.

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@peach414144

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.

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@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.

REPLY
@rosemarya

@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/

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@sofrustrated You are so correct. Our medical system is so frustrating. My son went for a lipid panel today, drove 60 miles, only to be told, just as the tech started to put the spigot needle in his arm that he was supposed to be fasting for 12-15 hours before the draw. The docs could have given him notice at least 12 hours prior. Truth is, you are your own best doctor, anyway. The folks in the white coats and Mercedes only look at one issue at a time, because that is the Medicare rule. I have about 350 CLINICALLY DOCUMENTED symptoms and signs of several dozen deleterious syndromes and genes. My Amyloidosis (Gelsolin) has about 200 of its own set. So get yourself a good whole genome (your whole package of genes and syndromes) clinical grade analysis, spend some time talking it over with a top geneticist, and THEN decide what to focus on. I have a bunch of syndromes which are quite serious. I think about 25 or so genes/syndromes referring to cardiomyopathy (cardiomegaly, long QRT, Arrhythmia, etc.), and several about Gelsolin Amyloidosis and Fukatin Limb Girdle Muscular Dystrophy, and some lesser damaging DNA issues such as encephalopathy, cancers, nerves. But the stuff about loss of hair and cutis laxa (sagging skin) and wide thumbs and cracking teeth and brittle finger and toe nails, I try not to worry about. Ignorance is sometimes a good practice.

REPLY
@rosemarya

@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/

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Thank you for checking up. I am not good at navigating sites such as this but I do receive email notices from this site that I go into, i.e. this post from you. Since Good Friday my urine has returned to normal….normal color, very little bubbles in urine only periodically, and no pain in side or back. On March 29 my urologist did agree to give me a prophylactic nitrofurantoin mono 100 mg prescription to take nightly to keep infection at bay although he said it was not infection because it did not culture. I still believe this was infection. I am going to give it another week then stop nitro.mono and see what happens. He wants to do a repeat cystoscope May 11 and has ordered a CT urogram (waiting to hear from hospital for schedule) even though CT scan (without contrast) and subsequent ultra sound showed nothing abnormal, as did his first cystoscopy. I am debating whether to undergo all this extra testing if urine continues to be "normal". I have no symptoms of bladder cancer, etc.

REPLY
@so1frustrated

Thank you for checking up. I am not good at navigating sites such as this but I do receive email notices from this site that I go into, i.e. this post from you. Since Good Friday my urine has returned to normal….normal color, very little bubbles in urine only periodically, and no pain in side or back. On March 29 my urologist did agree to give me a prophylactic nitrofurantoin mono 100 mg prescription to take nightly to keep infection at bay although he said it was not infection because it did not culture. I still believe this was infection. I am going to give it another week then stop nitro.mono and see what happens. He wants to do a repeat cystoscope May 11 and has ordered a CT urogram (waiting to hear from hospital for schedule) even though CT scan (without contrast) and subsequent ultra sound showed nothing abnormal, as did his first cystoscopy. I am debating whether to undergo all this extra testing if urine continues to be "normal". I have no symptoms of bladder cancer, etc.

Jump to this post

I am happy that you are taking a positive attitude to all of this. And at the same time I am sharing your frustration at the unknowing. I want to commend you for your commitment to advocating for yourself and for working in communicating with your doctors.

I hope and I pray that the doctors can provide you with the information and the support for whatever you decide about any extra testing. If I or a loved one were in your situation, I would want to know: Is there a recommended time frame to do the tests to get the possible information? What kind of information would the tests provide? And what would be the available treatment options for a possible diagnosis? And my 'all time favorite' question is: What would you (doctor) say to your son if he were in my place?
——
You should get an email notification for this message because I am sending it as a REPLY to your post.
I am going to send a 2nd post to you about how the New changes on Connect.

REPLY

@so1frustrated, I have copied/pasted your @name here so that you will get an email notification.

If you want to better understand navigating this site, You can go to this link:
https://connect.mayoclinic.org/blog/about-connect/
I would suggest that to begin, you follow the steps to to go to
Group Directory
select > Kidney and Bladder
Click Follow (Now you are following the Kidney and Bladder Group)

If you want additional help you can let me know. There will be some short instructional videos coming out soon, too.

Here is a discussion where some members are actively learning about the new features. https://connect.mayoclinic.org/discussion/exercise-the-new-connect/

REPLY
@rosemarya

I am happy that you are taking a positive attitude to all of this. And at the same time I am sharing your frustration at the unknowing. I want to commend you for your commitment to advocating for yourself and for working in communicating with your doctors.

I hope and I pray that the doctors can provide you with the information and the support for whatever you decide about any extra testing. If I or a loved one were in your situation, I would want to know: Is there a recommended time frame to do the tests to get the possible information? What kind of information would the tests provide? And what would be the available treatment options for a possible diagnosis? And my 'all time favorite' question is: What would you (doctor) say to your son if he were in my place?
——
You should get an email notification for this message because I am sending it as a REPLY to your post.
I am going to send a 2nd post to you about how the New changes on Connect.

Jump to this post

Thank you so much! I am leaning towards no further testing until I see if "symptoms" (gross hematuria) occur again. The longest I can tell that I went without gross hematuria during all this was about 15 days after the one-time nitrofurontoin 7-day course I was prescribed on December 4 after seeing urologist's nurse when I had extreme blood and clots and vomiting the morning I saw her. The symptoms of green urine then cloudy urine reappeared December 24 but urologist "brushed it off" when I told him. If I go at least that long with no further symptoms I will wait; if the gross hematuria appears again I will undergo the CT urogram and another cystoscopy. Will keep all updated and of course "check back" on others going through similar situations. The only reason I am "leaning" this way is that all tests and scans also have their own possible "repercussions" and do not want to chance unless their is a definitive need for them.

REPLY
@rosemarya

I am happy that you are taking a positive attitude to all of this. And at the same time I am sharing your frustration at the unknowing. I want to commend you for your commitment to advocating for yourself and for working in communicating with your doctors.

I hope and I pray that the doctors can provide you with the information and the support for whatever you decide about any extra testing. If I or a loved one were in your situation, I would want to know: Is there a recommended time frame to do the tests to get the possible information? What kind of information would the tests provide? And what would be the available treatment options for a possible diagnosis? And my 'all time favorite' question is: What would you (doctor) say to your son if he were in my place?
——
You should get an email notification for this message because I am sending it as a REPLY to your post.
I am going to send a 2nd post to you about how the New changes on Connect.

Jump to this post

Rosemary and others, just to update….the bleeding and passing clots started again so I saw my NP on 4/15 and my leukocyte count up to 2+ and protein 2+, leukocytes being 1+ and protein trace at urologist on 3/29. So I talked her into trying 500mg cephalexin every 8 hours instead of 12 for 14 day. The day after I started the antibiotic (Fri. 4/16) I passed A LOT of blood and clots then back to dark yellow that night. 4 days later on the 20th blood back in the evening and when got up to urinate at around 2am had to push to get urine started….really big clot passed, but thankfully passed. Reddish urine continued, then through today mostly between cola colored and amber, until just now when passed fresh blood again and a small clot. Have not heard back on latest culture but will call tomorrow….nothing showing up in culture so urologist saying not an infection, but confused because of leukocytes. I have follow-up with my NP on Wednesday the 28th for another urine dip stick test to see where leukocytes are at, and will ask for another kidney function test (eGFR) and see if there is any test for heart problems, as am now scheduled for CT urogram on May 3. Has anyone had a CT urogram and did it show anything CT scan and Renal ultrasound did not? Thank you all for your support and being there!

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