View Full Version : Having a bad relapse after symptoms re-appeared
Hi everyone...47 yr. old male here, in USA, 11 year old daughter, married 23 years. I had a long thread revolving around visible blood in my urine found on Sept. 4th of this year, and the subsequent feelings and investigation. If you wish to read it, it is here: https://www.nomorepanic.co.uk/showthread.php?t=223751
Anyway, after the in-depth investigations, including CT and cystoscopy, no cause was found. I was told to have a follow up appointment in March, 2019. The blood had only appeared one day....Sept. 4th, and not since.
So I got back to "normal", which for me involves minor worries all the time, a lot of rumination about death and how it will happen to me, and it's inevitable nature, trips to my therapist every two weeks. However, my super-anxiety over the blood in urine subsided a bit. October was nice. Early November was good.
Then horror. I woke Nov. 13th, and noticed what looked like more blood in my first urine. It wasn't a lot, and I tried to ignore it. None appeared the rest of the day. I used my urine test strips on my last urine before bed, and no blood. Good.
But then I woke up on the 14th, and the same thing happened again, with even more noticeable in the toilet. I tested it and it was positive for blood. Commence freaking out!
I called my Urologist's office, and they were totally unconcerned. I was told to just make a note of it, but no need to come back before my March follow-up appointment.
Meanwhile, the blood disappeared again. A small clot was passed later that day, solid looking, but that's it. In fact, since that day, Nov. 14th, the blood has not returned. But now I keep thinking how it was gone between Sept. 4th and Nov. 13th. So I don't know what to think.
I am super scared something was missed.
I came across an article in my compulsive googling that detailed a case of a 55 yr. old man in Alaska that complained of recurrent blood in urine, and went through the tests, that all came out negative. Eventually, he was able to get another cystoscopy that did indeed show a thickened area of the bladder, and biopsy sowed a muscle-invasive tumor that had been missed, and he died that year from metastic disease! Oh my god. This case just haunts me.
It's not like these types of examples are everywhere, but to me, just one case shows it could happen to me, too.
Even though my doctor was very experienced, with over 20 years doing this. Even though the numbers are greatly in my favor by percentage.
I also have discovered that the anti-depressant I started in July carries an abnormal bleeding warning, and in fact they even mention it in the TV commercial for the drug. It was Trintellix. It had only been on the market since 2013. There is not a lot I can find about bleeding cases from this drug, but then again, the warning about abnormal bleeding is right there. Also, I had been taking 2000 mg of Turmeric every day, which is also considered an anti-coagulant.
I stopped both of these drugs after the bleeding on Nov. 14th. I haven't bled since, but now I just have to wait. If I do bleed again after stopping those, I guess I can rule those out as a potential cause, which will make me even more scared that I do have some kind of hidden urinary tract cancer.
So I also called my urologist office again, relayed my anxiety, and they agreed I could come in for a consultation on December 14th. I have so many questions, and I want to talk to him directly. He also never did urine cytology, and his office doesn't favor the test. Nor do many urology departments in the US, like at the world famous Cleveland Clinic, for example, because of unreliable results, but still, I would like to have one more clear test in the record....though what if it isn't clear? Will he do one because of me asking about it. Now I have anxiety about whether to get one or not! Google only stokes my fears, and never gives me relief. DON'T GOOGLE! I wish google would disappear.
I even went to an inpatient mental health facility last week for assessment at the urging of my therapist because of how anxious and depressed I've been. They wanted me to participate in an intensive outpatient program, but I could not afford it, so now I will continue to try and get through this by myself, and with the help of boards like this one.
I pray I don't have hidden bladder cancer. How often can they repeat these tests?? I can't afford to pay for endless testing. Even in the UK, how often would they let you repeat tests after negative/clear results the first time through. Besides, I am deathly scared of cystoscopy again, as mine did hurt, even though they say they don't.
Thanks for reading this. I consider it therapeutic to put my thoughts and fears down. I just want to live normally. I will try to distract myself. I am just so scared of ending up with cancer that will kill me because it wasn't caught in time to be treated successfully.
I just want to live normally. I am just so scared of ending up with cancer that will kill me because it wasn't caught in time to be treated successfully.
I remember that thread. I find the last part above the most ironic part of HA. You're so afraid of dying that you're not living. I have actual physical issues that can put me six feet under at any given time. My heart could go out. My cancer could return. Who knows? I truly don't concern myself with it other than live as healthy as I can and see my doctors for check ups etc.
You're suffering from a real illness that's doing that to you above ground :weep: Read the words in my signature and hopefully you can take them to heart.
Something you said in a response to another member you should take to heart as well.
We can't chase these phantoms forever.
Positive thoughts
spacebunnyx
03-12-18, 17:22
Hi Carlton, I feel your anxiety completely. The majority of blood in urine cases end up being unexplained... just one of those things that our bodies do.
As you know I also have blood in my pee.... I can't see it but it shows up on almost every dipstick that has been done in over a month (around 10+ dipsticks). It sounds like they have taken good care of you..and you've been given the all-clear. Yes I know, mistakes do happen... but they are sooooooo unlikely. It is scary when you have a genuine symptom that causes worry, but a sinister cause has been excluded for you...
saying that if I get the all-clear but continue to have blood I wonder how I will be??!!! :D
Oooohhh Carlton-
So sorry you are going through this. As other people have said, unexplained bleeding is not that uncommon, on top of which you have been taking meds which can cause it. You mention you have stopped those. Are you sure that is a good idea? Does your doctor know?
Kingdawson
03-12-18, 21:09
I remember that thread. I find the last part above the most ironic part of HA. You're so afraid of dying that you're not living. I have actual physical issues that can put me six feet under at any given time. My heart could go out. My cancer could return. Who knows? I truly don't concern myself with it other than live as healthy as I can and see my doctors for check ups etc.
You're suffering from a real illness that's doing that to you above ground :weep: Read the words in my signature and hopefully you can take them to heart.
Something you said in a response to another member you should take to heart as well.
Positive thoughts
Your attitude, advice and your general nature has to be commended.
I remember that thread. I find the last part above the most ironic part of HA. You're so afraid of dying that you're not living. I have actual physical issues that can put me six feet under at any given time. My heart could go out. My cancer could return. Who knows? I truly don't concern myself with it other than live as healthy as I can and see my doctors for check ups etc.
You're suffering from a real illness that's doing that to you above ground :weep: Read the words in my signature and hopefully you can take them to heart.
Something you said in a response to another member you should take to heart as well.
Positive thoughts
Indeed...and thank you Fish....I often see myself almost as a split personality. I can see things logically, and know how I should think and act, as well as what attitude I should take, yet there seems to be that other part of me that has incredible difficulty putting it all into practice. The fear takes over. It's incredibly difficult to stave off.
---------- Post added at 18:45 ---------- Previous post was at 18:41 ----------
Oooohhh Carlton-
So sorry you are going through this. As other people have said, unexplained bleeding is not that uncommon, on top of which you have been taking meds which can cause it. You mention you have stopped those. Are you sure that is a good idea? Does your doctor know?
My therapist and pilldoc do know about me stopping the Trintellix. I am considering other options. Being that I am only taking Clonazepam now, and a very small dose at that, like 0.5 mg once per day at bedtime, I feel a bit like I'm on the edge of a cliff. It has been a long, long time since I haven't been on any anti-depressant of any type, and it's been nearly three weeks now. It's being monitored. Thank you for your positive thoughts, JoJo.
---------- Post added at 18:47 ---------- Previous post was at 18:45 ----------
Hi Carlton, I feel your anxiety completely. The majority of blood in urine cases end up being unexplained... just one of those things that our bodies do.
As you know I also have blood in my pee.... I can't see it but it shows up on almost every dipstick that has been done in over a month (around 10+ dipsticks). It sounds like they have taken good care of you..and you've been given the all-clear. Yes I know, mistakes do happen... but they are sooooooo unlikely. It is scary when you have a genuine symptom that causes worry, but a sinister cause has been excluded for you...
saying that if I get the all-clear but continue to have blood I wonder how I will be??!!! :D
I pray you are right, spacebunny. Thank you for the positive thoughts.
Had a major panic attack today. Went to the bathroom earlier and saw about 4 or 5 black specks, like pepper, floating in my urine. Now I'm scared they were mini clots. I didn't pay attention that much to tell if they were in the toilet already before I went. But my whole body got cold. I started hyperventilating and couldn't catch my breath. I got to crying thinking I'm going to die this year and leave my daughter. I am just so scared...I don't know what to do anymore. I see the Uro a week from Friday. I can't afford a lot of tests, but I may ask for them anyway. Not sure if he'll do them after doing them in September. I feel so hopeless. I can't take this fear and mental suffering. I haven't seen any actual blood again since Nov. 14th. Also, I've been taking ibuprofen the last 4 days for headaches from a cold I've had the last two weeks, an NSAID known for causing bleeding. I tell myself maybe that caused these little clots if that's what they were. I'm not convinced. I told my wife and all she tells me is that nothing is wrong with me. I wish I thought that, but I don't believe it. I just can't take anymore right now.
I had blood in my urine for many months. I ended up having a cystoscopy and a renal CT scan. My urologist told me that they were the 2 gold standard tests for bladder cancer. You received the all clear after having those tests. Are you sure you are seeing blood in your urine? Dipstick tests are so unreliable that I wouldn’t even bother buying them.
Ok, you are having an HA crisis and you need to find a way through it. I think your best way forward is to go back to your dr and explain how you are feeling. If he or she believes more tests are not necessary then they can help you deal with the extreme anxiety you are feeling...... or if they think more tests would definitively rule out a sinister cause then maybe they could order those. These feelings will pass.
Yes....it was a bit of a crisis. I can't seem to stop it from happening periodically. I feel a bit calmer now, but I am also suffering with an ear infection and sinusitis, stemming from a nagging cold. All told, I feel pretty miserable. I just went to my walk-in clinic last night since my ear was clogged completely, and prescribed an antibiotic. Hopefully that will knock this sickness out soon. It's been nearly two weeks dealing with it. Caught from my daughter, who got over it much more quickly, as did my wife.
Meanwhile, in the urinary symptom front, I have an appointment scheduled for Friday 12/14, for a follow-up consult with my urologist.
He already messaged me back after I had sent him a message, saying that he felt "very reassured" by my tests done in September. He added that he would agree to schedule another cystoscopy, with the addition of a retrograde pyelogram during the procedure, in the near future, as he put it. This has me somewhat confused and worried. Is he saying he will do this just because I am showing anxiety? Or is he really troubled by the recurrence and wants to look again? I will have to wait until next Friday's appointment to ask him in person. He also said that his office just doesn't like doing Cytology, and he does have 20 years plus doing this. Nor do the other doctors in his practice. His quote was "accuracy is poor". He much prefers just trusting the cysto.
So here we are. I cannot even schedule a cysto until after the 1st of the year, according to their scheduler, which will put me past the reboot date for my health insurance deductible, meaning it will cost me a lot. Maybe $1,000 out of pocket, or somewhere near it. I am scared to death of getting another one, as I handled the last one very poorly.
I am both afraid of the procedure, and what they might find, and as with the last time, also afraid that if they find nothing, and the symptoms keep recurring, that I won't be comforted. Visible blood hasn't appeared since 11/14 now. I am still anxious every time I go to the bathroom.
Maybe I should just walk away? If I die, I die. I am so tired of dealing with all of this. We all die anyway. There is no escaping it, and every single day is closer to that fact, that reality. I feel so depressed right now.
Yes....it was a bit of a crisis. I can't seem to stop it from happening periodically. I feel a bit calmer now, but I am also suffering with an ear infection and sinusitis, stemming from a nagging cold. All told, I feel pretty miserable. I just went to my walk-in clinic last night since my ear was clogged completely, and prescribed an antibiotic. Hopefully that will knock this sickness out soon. It's been nearly two weeks dealing with it. Caught from my daughter, who got over it much more quickly, as did my wife.
Meanwhile, in the urinary symptom front, I have an appointment scheduled for Friday 12/14, for a follow-up consult with my urologist.
He already messaged me back after I had sent him a message, saying that he felt "very reassured" by my tests done in September. He added that he would agree to schedule another cystoscopy, with the addition of a retrograde pyelogram during the procedure, in the near future, as he put it. This has me somewhat confused and worried. Is he saying he will do this just because I am showing anxiety? Or is he really troubled by the recurrence and wants to look again? I will have to wait until next Friday's appointment to ask him in person. He also said that his office just doesn't like doing Cytology, and he does have 20 years plus doing this. Nor do the other doctors in his practice. His quote was "accuracy is poor". He much prefers just trusting the cysto.
So here we are. I cannot even schedule a cysto until after the 1st of the year, according to their scheduler, which will put me past the reboot date for my health insurance deductible, meaning it will cost me a lot. Maybe $1,000 out of pocket, or somewhere near it. I am scared to death of getting another one, as I handled the last one very poorly.
I am both afraid of the procedure, and what they might find, and as with the last time, also afraid that if they find nothing, and the symptoms keep recurring, that I won't be comforted. Visible blood hasn't appeared since 11/14 now. I am still anxious every time I go to the bathroom.
Maybe I should just walk away? If I die, I die. I am so tired of dealing with all of this. We all die anyway. There is no escaping it, and every single day is closer to that fact, that reality. I feel so depressed right now.
Poor you- you sound calmer but very down. Your dr doesn’t think there is anything wrong: that is what “very reassured” means in dr speak. The extra tests are just belts and braces (most likely because you are anxious). I think if they don’t find anything wrong in the next test (which they most likely won’t), you should ask for an explanation of how blood can appear when nothing is wrong. For me, understanding that, for example, capillaries in the kidneys can get a bit leaky, or something, would make me feel better.... it would give a plausible reason for the blood and stop me thinking the worst every time...
So I had an appointment scheduled with my Urologist tomorrow, and my wife was going to come, because she wants to be there so I don't misinterpret anything the doctor says, or the manner in which he says it, jumping to conclusions. Then the Doc's office called today to change the time because the doctor has surgery, and now it's at a time when my wife cannot go. So now I feel I must cancel the appointment because I don't want to go alone, but I'm so upset because I was finally going to be able to question my real doctor about these things that have been bothering me rather than googling things that send me into a panic.
TMI to follow...
Now, besides that, I have become Obsessive Compulsive about checking my urine each and every time I go. Even though I haven't seen in any blood, if I see anything floating, or any kind of debris in the urine, I freak out, thinking that it's part of a tumor breaking off and showing up, or mini blood clots when I see tiny dark specks in my urine, though I can't even be sure they are coming out of me, or were there already, or if I've always passed tiny bits of debris and never noticed before, but now I'm hyper-sensitive to it.
I feel like i'm losing it. I'm going through panic attacks nearly every day. Hyperventilating. Crying. All this happens when I'm alone. I'm not on any anti-D's still, and it's been a month. I don't know what to do anymore. My next Urologist appointment is Jan. 14th, with the doctor I'm seeing for a 2nd opinion. I really feel like I have something inside my urinary tract that's killing me and fate is letting it happen.
I am getting to the point that I can't take this fear anymore.
Have you cancelled the appointment yet? If you haven’t DONT! You are driving yourself mad.... does your wife know how you feel? Can someone else go with you, if not her? Maybe you could record the conversation, to avoid the (likely) problem if you misinterpreting what is said?
If not you must see you GP to get help with your anxiety- you can’t carry on like this!
Have you cancelled the appointment yet? If you haven’t DONT! You are driving yourself mad.... does your wife know how you feel? Can someone else go with you, if not her? Maybe you could record the conversation, to avoid the (likely) problem if you misinterpreting what is said?
If not you must see you GP to get help with your anxiety- you can’t carry on like this!
Thank you, jojo. I did cancel it and now rescheduled it for Jan. 2. I also called my PCP and scheduled an appointment to talk to him this Monday, the 17th. He is a good listener, and sadly, is retiring early next year, so I will have to find a new PCP...ugh. But I am hoping he might calm some of my anxiety issues. I will probably ask him to do a urinalysis then, and he likely will. That might help calm me down. I also plan to ask him about a possible nephrologist visit, in case this has something to do with my Diabetes and Kidneys.
This morning, I used that website Just Answer, which I you have to pay to use, but was hoping that a specialist on there might help me. To be honest, I don't feel much better. Basically, I was told "Anxiety" is my problem and that the tests I had should reassure me, essentially what my Uro said when he responded to my email.
I just have such a hard time accepting "benign idiopathic hematuria", or basically "you're bleeding for no known reason, but we doubt it's serious." The lack of a found reason is what haunts me. I wonder if there could be a much scarier symptom for a Health Anxiety sufferer?
---------- Post added at 10:20 ---------- Previous post was at 10:18 ----------
Have you cancelled the appointment yet? If you haven’t DONT! You are driving yourself mad.... does your wife know how you feel? Can someone else go with you, if not her? Maybe you could record the conversation, to avoid the (likely) problem if you misinterpreting what is said?
If not you must see you GP to get help with your anxiety- you can’t carry on like this!
Thank you, jojo. I did cancel it and now rescheduled it for Jan. 2. I also called my PCP and scheduled an appointment to talk to him this Monday, the 17th. He is a good listener, and sadly, is retiring early next year, so I will have to find a new PCP...ugh. But I am hoping he might calm some of my anxiety issues. I will probably ask him to do a urinalysis then, and he likely will. That might help calm me down. I also plan to ask him about a possible nephrologist visit, in case this has something to do with my Diabetes and Kidneys.
This morning, I used that website J**tA**wer, which you have to pay to use, but was hoping that a specialist on there might help me. To be honest, I don't feel much better. Basically, I was told "Anxiety" is my problem and that the tests I had should reassure me, essentially what my Uro said when he responded to my email.
I just have such a hard time accepting "benign idiopathic hematuria", or basically "you're bleeding for no known reason, but we doubt it's serious." The lack of a found reason is what haunts me. I wonder if there could be a much scarier symptom for a Health Anxiety sufferer?
---------- Post added at 10:21 ---------- Previous post was at 10:20 ----------
Sorry for the double post above...tried to edit my post and it did that....not sure why, since I've edited before with no problem.
I think the fact that lots of people are telling you the same thing makes it more likely to be true. You have a hard time accepting you have idiopathic bleeding because you have health anxiety. Therefore... the problem is health anxiety!!! I know I’m stating the obvious but that is the bottom line. (And I’m certainly not belittling it either. I am in its grips more than anyone!)
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