Prostate :: Clean Intermittent (self) Catheterization (CIC) - My Experience
Jan 1, 2015
Since I posted a thread about self-catheterization -- more formally called Clean Intermittent Catheterization (CIC) -- there have been a few different discussions on the topic in various threads. I thought it might make sense to bring those discussions over to a dedicated thread. With that in mind, I will summarize and/or copy and paste some of what was said before into this thread for better continuity.
My story in a nutshell. 68 years old with BPH probably since my late 20’s. Watch and Wait strategy with on-and-off trials of Tamsulosin (Flomax) with poor results. Symptoms were the normal retention issues resulting in frequent urination with incomplete emptying, urgency, and having to go to the bathroom at night in increasing frequencies. Near the end, two or three uti’s per year often accompanied by gross hematuria (bleeding).
Two years ago things got significantly worse and I couldn’t urinate on my own without physically pushing against my bladder (Crede Maneuver). That led to another trip to the urologist where ultrasound showed significant retention and hydronephrosis (water in the kidneys). I was told I needed an operation (this facility primarily did Turps) but first I had to rehabilitate my bladder because at the time it was too flaccid (stretched) for a good surgical outcome. I was given the choice of wearing a Foley Catheter for six weeks, or a program of self-catheterization (CIC) in order to decompress the bladder. I chose CIC so I didn’t have to wear a Foley 24/7, and also because I felt it put me more in control.
Six weeks later my bladder was rehabilitated to the extent they could do a Turp, and the hydronephrosis was gone. After doing some research and a lot of thinking I decided to put off the Turp due to the potential of irreversible side effects, primarily retrograde ejaculation. Two years later, I am still doing CIC while waiting for newer procedures with better outcomes and fewer side effects.
I will detail my experiences with CIC in following posts -- but to summarize, once mastered, it’s a painless five minute procedure that allows you to empty your bladder completely any time you want. With CIC, I therefore have no retention issues, no urgency, and in most cases sleep 6-8 hours through the night without having to get up and go to the bathroom. No UTI’s in over 18 months. And because my bladder has been partially rehabilitated, I can urinate normally about 50% of the time without using the Crede maneuver. My IPSS Score (International Prostate Symptom Score) would be Zero (the best), albeit with a little mechanical assist.
As of now, nothing that I have read about the various current procedures has tempted me to have an operation. That could, or could not change, in the future, but the nice thing about CIC is that you can stop it any time you want with no repercussions. The caveat is that CIC should be done under the supervision of a doctor who will monitor your BPH as required. Similar to seeing a doctor on a regular basis during a Watch n’ Wait BPH strategy.
I know many of you here have already had operations like Turp, and in most cases people seem pleased with the outcomes. CIC certainly isn’t’ for everyone, and I can understand why someone does not want to carry around a urinary “tool box” with them. On the other hand, with practice, it’s not the traumatic and scary procedure some think. I can honestly say right now that for me it’s about as traumatic as brushing my teeth.
I’m offering my experiences and thoughts on CIC for any of those who haven’t yet made up their mind on an operation. It even can make sense for those of you who don’t need an operation yet, but want to increase their IPSS quality of life score. In fact, wish I had done CIC earlier while on Watchful Waiting. Didn’t realize how much BPH had been affecting me for most of my adult life until I was able to empty my bladder completely.
CIC doesn’t have to be a permanent solution, it could just part of a waiting strategy like I’m on, until better surgical operations are developed with better outcomes and fewer permanent side effects.
For any number of reasons, the majority of urologists don’t seem to offer CIC as an alternative to surgery. My current urologist doesn’t as far as I know, but he’s OK with what I’m doing because it works for me. So, either you have to find a urologist you can convince to go along, or go to some of the major teaching hospitals where CIC is probably more in use and better understood. That is where I was taught, albeit not very well, but that is another story.
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JUst wanted to share my experience with my turp surgery. I'm 45yrs old, too young some say for me to having prostate issues but I put it down to my father side of the family (my father and uncles all currently suffer from enlarged prostates)
For the last couple of years been suffering from weak urine stream, having a full night sleep and waking up in the morning with the urge to go wee just to wee a small trickle. I also suffered from time to time having blood in the urine.
Went to see the Urologist, he did some testing, test on the strength on my urine flow (very weak the doc said) he put a camera up my penis to see inside and we could see clearly that my prostate was enlarge and was putting pressure on my bladder which probably explained why sometimes I could see blood on my urine. I have a benign enlarged prostate, no cancer worries which is good.
While I decided if I wanted to have surgery, doctor put me on Avodart. It did help but I wasn't sure if I wanted to take antibiotics for the rest of my life. Avodart temporary reduces the size of the prostate but if you stop taking it, you will still have the same problem again and it will only get worse.
Decided to have the surgery, I had it three weeks ago. spinal block, stayed in hospital one full day with a catheter inserted. Catheter was removed the following day in the morning, had to urine a few times into a container, followed by a scan machine pressed to my belly to see how much urine was left in the bladder. Passed the test and was allowed to go home that day at midday.
I can see the immediate benefit of the surgery where my urine stream is very strong. When I get up in the morning with a full bladder, no more urine trickle, just a strong urine flow. On the other side, I'm still suffering from post surgery effects, for example, frequent urges to go to the toilet and pee ( I probably go every 40 to 60 minutes) blood on the urine and pain (burning/stinging) every time I have to take a piss. The doctor says is normal for this symptoms to happen and it will take weeks before everything is back to normal. how long? it depends on the individual. I can get an erection, it feels a bit different and I will suffer from retro ejaculation ( I was warned about this)
Anyone that had Turp done, how long it took until you were pain free? (no blood and pain) Did you take any medicine to stop the pain or the bleeding?
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I am 36. I have chronic prostatitis for 18 years, that's half my life. My experience in the disease and treatment follows:
The pain is intense and crippling. I have to be in bed all the time. Intense spasms. Symptoms move from urethra to prostate, back,ass, testicles so when you feel you finished with a symptom there starts another. I also may have difficulty urinating and some time ejaculating. This condition has remained idle for a total of 6 years out of 18 and whenever I feel it is gone I have a really good flare up the very next day. Idle means I am not in pain but I get to wet my pants after urinating.. That is the closest I can have to normal life. My sex life is not good because I get erectile dysfunction when chronic prostatitis is active. When it moves to being idle there is a tendency for restoration of erectile capacity however it is clear to me that I do not respond to visual stimuli any more . Reason for ED is venous leakage. Location of pain is as such that I frequently check both my urinary system and intestines.
Findings: High bladder neck, non typical inflammation of colon, prostate has no infection
Medical checks so far: Urethroscopy, Colonoscopy. prostate, testicular, bladder, kidney ultrasounds. urine and prostate fluid cultures.
All cultures have come back negative. Bladder ultrasound shows some urine remaining after fully urinating.
Experience with medication: I have used antibiotics, a-blockers, mesalazine for my intestines and cortisone (buddy cole). For ED I have used Viagra and Cialis.
When I have flare ups NO medication works to control the pain. Or it may work for some weeks and then all of a sudden stop working. Medication for ED seems to be effective provided my symptoms are either gone or are not too intense. Symptoms come and go and it seems I cannot really control them.
Psychological impact: I am desperate and seriously considering suicide when I have flare ups
Social impact: No friends left. I do not have the energy to move out of bed
Fertility: Thankfully no problems whatsoever. However I am extremely worried whether my offspring will have the same problems as I do.
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Well, I got home this afternoon (Thurs) after the op Tues @ 7 p.m. And things seem to be working OK. No more Tamsulosin needed, so that's one benefit right there. I'll update after a few days as the the other possible effects.
The anesthetist chose a spinal anesthetic, which I was somewhat chary of, preferring to be totally knocked out. Later I remembered that there'd been some research that found that older people who had anesthetics died earlier, so he was right on that score. He also told me that this way I had a smaller number of anesthetics (general meant 14!, this way 1 to 3).
I didn't like the thought of being awake and watching the op, but he assured me I wouldn't feel a thing; I wouldn't see anything; and I'd be able to feed and drink more or less straight afterward rather than many hours later. And so it came to pass. Just numb legs for a while. I really didn't feel anything. All over in about an hour. I even dozed a bit on the op table.
However, that night (Tues) was not good. I had a constant feeling of wanting to sh*t. However, no matter how hard I tried (and I used two laxative suppositories), virtually nothing happened. I later found out this is a side effect of the somewhat larger catheter and balloon that was put in place.
So I found it hard to sleep. But just when I did doze off once, the nurse came in for the fourth time to take my blood pressure (2.00 am?). I was really upset and told her not to do any more (all the previous ones had been OK anyway). But by then I couldn't get back to sleep. So I was wretched all the next day (yesterday).
However, last night I got to sleep about 8:30 pm; and slept right through to breakfast. Bliss.
The surgeon had come in on Weds; told me about the defecation urge origin; said I could go home today if my urine was pretty clear by then and the catheter had come out. I see him again in a couple of weeks, when the result of the biopsy will be with him. He also said only 10% need the op again in 10 years; most are fixed for good. Here's hoping.
I was apprehensive about the removal of the catheter. In the end though, it wasn't too bad. I did most of it myself, easing it and rotating it a bit when it seemed to stick. Whew! Great. Then I pee'd a couple of times to test things; told I was OK to go. I left.
Home by 3 pm today. Then did a good walk (4 miles) and all's well. Still some blood and bits, but most clear. Good flow. Now to see how I am at night.
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After doing the best I can to ferret out the risks vs benefits of cardiac catheterization. 92% of my brain says, "No." That niggling 8% is a real pain.
I am female. I am over 60. I have not had a myocardial infarction, (that they're telling me about anyway). I have some stress wall hypertrophy, but that's pretty much it. If I could get the physicians/cardiologists, to give me better evidence of need for such an invasive procedure, I might consider it...however...
I know me. Just having the procedure would be psychologically, and, therefore, physically, ruinous. I think I understand - but who can understand this really - that choosing not to have the catheterization, and whatever may happen as a result, means I might sign out quite unexpected. But is this a better way to live? I think so.
I have not felt "well" for at 7 years. (I'll spare you the ailments). However, I don't get colds, flu (no vaccinations)...I don't have hypertension. I'm told I have angina, but I am convinced that the post-meal sensations I get are due to gastric/diaphragm...more on that order of things. I don't have frank chest "pain."
I'm figuring that it will be a complete crapshoot to refuse the catheterization, but I am 100% certain, that there is a better chance of me surviving an invasive procedure if I don't die before I have it, then lending myself to what looks like a never-ending routine of invasive procedures.
What I'm currently hoping for, but have been unable to get, is a cardiologist who will agree to fully monitor me; one who truly understands the various medications available and who would find one that is best suited for this particular body, and who considers cardiac catheterization, et al, a last resort, rather than a first. (Nice fantasy).
So far, I've had the general practitioner I see, attempt to scare the hell out of me without telling me on what evidence he was doing so. (I would change to another GP if there was another one around). That kind of tactic is not only useless, but demoralizing. When it comes to "heart," demoralization can, without a doubt, lead to "heart trouble."
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I'm a 20 year old female, I had a nose operation and came out with a Catheter from the hospital as I was unable to pee after my op. I had been getting urine infection almost every second week with the Catheter. I finally got that out at the end of June and following a failed twc I was taught self catheterisation.
2 days later I ended up in hospital unable to perform it where they drained my bladder for me. I was then released 5 days later managing to catheterise myself.
After coming out of hospital I have been getting these sharp pains I my sides, initially just my left side but know my right side under my ribs and goes round to my back. I went to the doctors on Monday and showed I had a severe urine infection... I was given ciprofloxacin 500mg and tramadol 50mg 4 times a day... I also was told my kidneys were a bit inflamed.
I went back on Friday as I was feeling worse! They done a dip test which showed no infection but was sent to the lab anyway, I was taken of the tramadol and put on paracetamol and codeine if I needed it (which I do) I have now been constipated since Monday as well!
I'm still getting this horrible sharp pain in my sides and lower back as well as very nauseous ( not been sick though) and extremely tired all the time. I'm getting really sick of it all now and just don't know what to do nothing is taking the pain away, any suggestions would be great! I'm sick of constant visits to the doctor but don't seem to get anywhere with them.
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March 25th I made the decision to leave the entertainment industry and get sober. Since then I have slipped up and drank only 3 times and have no desire to sip a drink again... It always makes me feel worse/horribly depressed. It just brings me to a dark place. I have been taking Xanax for the past 7 years because it helped me deal with my job... Being in the spotlight... Having no privacy... And it also helped me deal with a very mentally abusive Husband who also happened to be an actor and active cocaine addict. I am proud to say that I filed for divorce and finally got away from a very toxic lifestyle that I felt was leading to my death.
I am weening off Xanax... I am down to 3 mg a day (I was taking up to 10 mg a day... Maybe more at my worst point) and I am under a doctor's supervision.
All of this is just so hard. My whole life is changing and I know it is changing for the better in regards to my health but this is so hard. Divorce, massive job/.lifestyle change, moving out of la, searching for a job and going through all my savings fast. It is SO SO hard not to get caught up in fear right now. I have been SUPER depressed and overwhelmed and I have been letting my depression and anxiety get the best of me lately. I'm feeling really defeated lately and super overwhelmed.
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When cleaning the penis, should the foreskin be retracted fully? Is it necessary to wash the top part of the shaft under the foreskin too or just the head? What is it doesn't retract that much? Is it sufficient just to clean the head?
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A few hours, I was masturbating with a clean pencil. After I got an orgasm, I urinated and cleaned myself off. Less than an hour later, I had this feeling that I wanted to pee but whenever I tried, my vagina started to hurt (as if it was being stabbed by a needle) and then, I noticed my vagina was bleeding slightly. Afterwards, I decided to shower. Now it has a few hours, I just went to pee, and it still really hurts. It's still bleeding. What should I do?
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Do you have to have a clean U.A. to get treatment?
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I am a Heroin addict of 7 years. I have been clean on and off for the past 2 Years. I have been on 50mg of Methadone Maintenance. I did not find out I was pregnant until today I am 12 weeks. In the 12 weeks I was clean 30 days then used for one night then got clean for 18 days and then I've been using hard for this past past week and a half. I am not going to pick up again. I am on methadone but I am going into rehab to detox the methadone as soon as I am in my second trimester. So I only want to know if any other women have been through this same thing. Used during first trimester and stayed clean the rest of the pregnancy. Is your child healthy? Are there any complications? Because of my use would it be smarter of me to abort because I honestly don't know the damage I have done? I will not have an addicted baby to ANYTHING! And I also don't want any complications. Please give me any advice. I am already taking prenatals, eating extremly healthy, proper hygiene, and dr check ups are scheduled. I will take care of this child the best that I can. I am just anxious to know if the damage I caused from using early in pregnancy is already done?
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Today I am 12 days clean of methadone and 7 no oxy... Today has been a real struggle I feel horrible. Today has been the worst yet. I'm exhausted my body aches I have hot and cold flashes yet I'm constantly freezing no matter what I do. Terrible headaches that last all day and night. Feeling really close to my breaking point. I hope it doesn't last too much longer I don't think I can last if it does.
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I've been experiencing an intermittent vibration from the region of my heart for the last 5 months. It can occur at anytime but usually when I am at rest or sleeping. I also get PACs and tachycardia in the afternoons which occurs whenever I am standing or walking (approximately 110 bpm). Sometimes the vibration is triggered by a PAC.
I have done the following tests
- 24 hour ecg (normal)
- Echocardiogram (normal)
- Blood test to check electrolytes and thyroid (normal)
I am 31 years old and Male. I am currently taking medication for hypertension but have been assured this is not a side effect of the med.
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I was wondering if anyone has experienced any kind of pain like this:
For the past couple years or so I have had this intermittent type of pain (it usually happens about a couple times a week, for instance it happened in the beginning of the week for at least two consecutive days and not at all today; each episode usually consists of a series of acute attacks, maybe several of them in a row, and then they would just stop). This would happen in several areas: mainly now my thighs and legs (almost always the back of them, though a couple times it has been along the front); sometimes it is in the arms too; for a little while it was in the back (though it hasn't happened there for a while now).
I'm not sure how to describe the pain (I wish there was some sort of questionnaire I could find that might help me in that area); it's definitely not severe, but then I'm known to have a high tolerance for pain. I would say it is more sharp than dull and it seems to be a kind of stabbing pain though maybe not exactly shooting, though I guess it could be thought of that way (I don't know that it's radiating either--I can't see how it can be radiating anywhere; it seems, if I am remembering correctly, it is moving along the length of some specific area; that doesn't seem like it would fit the description of radiating). It is definitely not tingling or numbness (except when it happens in the arms--then there is a definite weakness that results after it in which I have less of an ability to grasp anything with much strength).
I'm just curious as to what can be causing this, or maybe it's just normal when you age, though I wouldn't consider myself to be too old at just 33.
Well, if anyone has any ideas I would appreciate hearing them. I would say for sure the pain in the arms sounds like some sort of nerve pain but I'm not sure about the other areas. I went to the doctor once about it, but he wasn't able to help much, just called it "fibromyalgia" which is basically what they say when they don't know what it is. For a while I was sure it was nerve pain but then I keep hearing how nerve pain is more of a tingling, numbness or loss of sensation more than actual pain; and then the doctor calls it fibromyalgia which from what I gather is thought to be muscle pain. I do not participate in any rigorous exercises, just walks for a mile or more a few times a week so it shouldn't be due to any sort of injury.
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Hi Does anyone experience upper right/ middle intermittent throb 24 hours after having a drink. Just a pint of cider or two glasses of wine can do it. Normal lft and low ggt, fatty liver diagnosed couple of years ago, only had odd drink since thanks
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Is it just me or does anyone else experience an intermittent clunky sensation from their new hip one walking? I'm 5 weeks in with a ceramic on ceramic. No other problems and if this how it's going to be I can live with it. I have read that some people with ceramic hips experience clicking. . Just wondered if I describe clicking as clunking!
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I'm going to start off by saying my condition/illness or whatever it may be is a medical mystery to six doctors (physicians, neurologists, psychiatrists) and that I am unemployed and rejecting job offers because my condition limits my abilities and brain function. It is a roadblock in my life and I can't seem to drive around it. I am a healthy and fit 24 y/o male who has been suffering from transient, hard to describe disorientating episodes/spells that I first had the pleasure of experiencing at 18. Since then, the episodes have occurred almost daily but do not last all day long - they are TRIGGERED by certain situations and environments. I can feel the spells gradually, but pretty quickly coming on (they don't occur at the drop of a hat) and I actually have the ability to stop them by laying down in a dark room and literally putting a pillow over my face and just "shutting down" for a couple minutes. Weird, I know. The "spells" last anywhere from 10 minutes to multiple hours, depending on if I get to a dark room with a pillow. I've tried multiple migraine medications and none have even remotely helped.
Triggers:
-Focusing on something for more than a few minutes - even talking to a person! I can't even talk to a freaking family member face-to-face without falling into one of these spells. One minute I'm fine and then there's a total disconnect between what I'm seeing and my cognitive function. Depth perception also throws me off here.
-Similar to focusing...when I'm talking for an extended period of time. It feels like my brain is totally deprived of oxygen and I then fall into one of these disorienting episodes
-Light contrast situations, especially when I'm in a well-lit room when it's dark outside. It's like my brain doesn't "agree" with what i'm seeing and the light situation
Symptoms:
In addition to feeling extremely disoriented, the other symptoms include a general feeling of disconnectedness, brain fog, a headache of pinpoint pain in the back right of my head that occurs during most of the episodes, a massive drop in mood and overall emotion (apathy I guess you could say), a minor lack of memory of anything that occurred during one of these episodes (for example if I read 5-10 pages during one of the spells I wouldn't remember specific details of the read but would remember the general theme and whatnot), and extreme cognition trouble (speaking, writing and even focusing on a person and their eyes). One minute I'm thinking and speaking clearly and the next minute one of these episodes can surface and I start to totally jumble my thoughts, words and sentences and I sound like a complete idiot. At this point in the dizzy spell, I want to just lay in bed and cover a pillow over my face in the dark. When I do that, it's literally like hitting the reset button and the symptoms decrease significantly.
I have had an EEG and and a brain MRI - both normal.
These episodes or spells or whatever they are are affecting my quality of life. I used to be a very happy, energetic and social person and now this issue is somewhat holding me back, though I do go up against it daily in hopes that I can increase my tolerance of the spells, which I can't.
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In from my evening shift at work, and I have got to say that I spend the time before I had to go in, scrubbing my eye lash margins with a wet cotton ball and baby shampoo (the old standard) both top and bottom, then after rinsing it off, I proceeded to wipe the rest of my face with some full strength tea tree oil on a cotton ball, and let it sit for a while before I took a shower. Scrubbing the margins (insides where the oil glands are) really was a bit uncomfortable (it didn't hurt though) and it did produce some of that lovely old whitish stuff, but I cannot believe how much better my eyes felt all night long (and they look better too) after doing this. Now I am going to hit this full force and keep doing this every single morning and every single night and see what happens. (I fell by the wayside on the Wet Ones, b/c they dried out my skin in the eye area too much, sadly). But I did mention in a previous post that my skin under my eyes felt like it was "pulling" and it was VERY crinkled looking and pulling upward. After doing this, it seemed to lessen that feeling (and it looks better too). I am hoping and praying that with dedication and persistence in encouraging my m glands to produce oils again, this could be something to get excited about. I sure hope so, but wanted to share. Has anyone else had success in doing this persistently? What inspired me to really get to it was watching the video today on the BlephEx procedure. I can't afford to get that done so I thought to myself, well I can certainly deeply clean and stimulate those glands on my own at home (especially after I saw all the gunk that the lady in the vid had come out of those areas). I saw some of the same thing with my own eyes after doing this and it is giving me some hope so I thought I would share.
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I don't know what happened. I have been doing great the last 2 weeks, and then all of a sudden this morning was bad. I woke up in a panic attack. I really want to know what is going on. I am still seeing a counselor, doctor, and going to na meetings. Being over 120 days clean, would this still be some sort of PAWS. I am still struggling with how all this started while i was using. I don't really feel depressed, but this anxiety does make me feel down. Can you have anxiety this deep into withdrawal. Again, i used normal opiates for over 2 years, and switched to loperamide the last year. The lope was about 20 to 30 a day. A big part of me still thinks that after even 12000 dollars of testing, the doctors have still missed something. Is all this still normal? I mean I felt great the last 2 weeks, and then all of a sudden. Please respond anyone who has experience with this. I really think it's something else. I am scared of something not seen. I know this is a contrast from last post, but what is going on. I am trying to not take any of the xanax they gave me, but today i had to take 2 of the smallest doses.
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I've been avoiding going to the Dr's for a while now, as I'm very scared.
Every few months, I have a day or so where I urinate blood. Also some blood clots. No real pain.
Then it will seemingly disappears for a few months, and will then return for a day or so.
I'm assuming it's something terrible.
Other symptoms seem to be frequent/weak urination.
Sometimes a mild/dull pain in one of my testicles.
Has anyone experienced this? WHy would it be every few months like this?
I plan to call my GP tomorrow as it happened again a minute ago for the first time in a few months and i'm plucking up the courage.
I'm petrified of the cystoscopy. (pain and embarrassment)
I had my urine tested for an unrelated issue a while ago, and it was apparently 'clean' (even though this was only a day after i'd been urinating what looked like almost pure blood)
How can this be?
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I had a heart catherization done in may 2014 and all was normal thank god now my question is what are the chances are for a person with mirmal heart cath to develop a heart attack , and can it happen withen a year from the cath please ?
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