My first post - and my experience

[BluBluBlu]

This is my first posting here and I hope you guys will be of some assistance. I am at a loss as to where to get information. Thank you in advance to everyone who reads my story and offers assistance. I truly am grateful.

My story begins on Apr 19, 2001 which was, as I recall, a Friday. Just after lunch as I was going back to work (desk job at a computer), I noticed some blood in my urine accompanied by burning as I urinated. I decided to see if it got better over the weekend but the burning increased until I could not void and what did come out was as red as a glass of wine so I went to the ER for help. Naturally, I was quite alarmed. I was 48 years old at the time.

At the hospital, they put a catheter inside me, my first time for that, and did some blood tests. The doctor, a very young man, told me that I probably had cancer of the bladder and suggested that I have it looked into. Later that night they took the catheter out and gave me a prescription for some antibiotics. The next morning, I was surprised that everything was normal -- good flow and no visible blood in urine.

After this experience, I began to see a urologist that had been recommended by people I knew who work in the medical field. He is considered the "go to" urologist for my area and several physicians have told me, "He's the one we all go to." Insofar as I can tell, he is the best in the area.

He recommended more blood tests and Ultrasounds and the end result was that I had a lithotripsy procedure done on Oct 29, 2001. I had a kidney stone, it turned out, and subsequent x-rays showed that the stone was gone. (I have a history of passing kidney stones.) I continued to notice blood in my urine and continued to call my doctor. He has twice prescribed Sulfameth/Trimethoprim in case I had a UTI but the blood continued to appear in my urine. Normally, I walk a couple of miles each morning and there is blood in the urine after the walk. This only lasts a couple of times as I urinate, then the urine is normal until the next morning. I also noticed what appeared to be small pieces of tissue in my urine. Sometimes, when a small piece landed on the side of the toilet bowl in the water, a "tail" of blood would flow down the side of the bowl to the bottom.

I saw my doctor several times during this period and always left a urine sample. One sample was quite ruddy and I knew that he was seeing what I was describing, including the pieces of tissue. He always said that, while there was blood present in the urine, it was not a cause of concern. I told him about the ER doctor telling me that I probably had cancer of the bladder and he said that such a quick diagnosis was unfounded. Nevertheless, he did say that he wanted to do a scope of my bladder, which was performed on Jun 29, 2004. He found no cancer at that time. He also did the finger test on my prostate and said that it was enlarged, then prescribed some Avodart (Dutasteride) which I began taking in Feb 2005, one tablet per day, and I still am taking it daily.

I also began to experience pain in my pelvic region. It is difficult to say exactly where this pain originates. It hurts when I walk or when I lean over (walking on uneven surfaces, such as a dirt path, is particularly painful) but disappears if I am seated or lying down. I am able to sleep very comfortably and can sit and read or watch TV. It hurts when I walk or lean over. I have not been able to discern any foods that make the pain worse, such as alcohol, chili or wheat, but the pain does appear to become worse occasionally. There is burning whenever I urinate and I have started to go more frequently. I usually get up 2-3 times during the night to urinate. Sometimes, when I sit down, it feels like I am sitting on a golf ball inside my rectum and it is painful.

On Mar 03, 2006, my doctor diagnosed me as a person with "Chronic Pelvic Pain Syndrome." I had never heard of this condition. He told me that the syndrome is not understood well and that there is no known cure, and that he had sent several patients to see a doctor at Stanford University who specializes in this area but that the results had been almost no change.

My blood work continues to be negative. I found a lump on my left testicle and the last time I saw the urologist I insisted that he feel it. He gave me a name for it, which I do not recall, and said that it was not cancer and was of no concern.

I continue to lead a full life and have made no changes to diet, including very moderate alcohol consumption, and I travel for pleasure a lot. I still walk a couple of miles every day and still see blood in the mornings after the walk. My life is normal, except that everything I do is accompanied by pain.

A couple of other things: 1) I had a biopsy of my prostate (they took six tissue samples) and they turned out to be normal. This was in Dec 2000. 2) Also, one day several years ago, I was urinating and I felt something strange. The sensation was that something had rolled over the tube and blocked my urine. The image I had was a bb being drawn into a small tube by the flow of a liquid and blocking the tube. I wondered if I would need to be cathetered again but the next morning the flow was normal. Could this be a factor? I have told the doctor about this experience. 3) Also, I had a flow stoppage again in Jun 2004. I had just gotten off an airplane and my custom was to take Dramamine when I flew. I had noticed that it was difficult to pee after flying and I deduced that the Dramamine might be involved. They put a catheter in again that day and it stayed in for several days. After that, I stopped taking Dramamine when I travel and have not been cathed again.

I am 53 years old and in otherwise good health. I am overweight by about 40 lbs. but doing sit ups is out of the question due to pain. I try to keep my weight down with the 2-mile walk every morning and trying to watch what I eat but I could stand to lose a few pounds. At the office, I normally get up to urinate about once an hour. If I have caffeine (coffee, tea, cola) I go more frequently. Sometimes, the urge to urinate comes up quite suddenly and I have to go right way. Occasionally, I spot my trousers. The pieces of tissue seem to not be in the urine any longer but it still burns when I urinate, although the flow is usually pretty good. My PSA continues to be good.

I feel like I am fairly young to be "falling apart." Do I have to spend the next 30-40 years in pain every time I walk or bend over? Is there anything I should do or avoid to get better? Believe me, any suggestions anyone could give would be most gratefully received.

Thank you to you all!

[webslave]

You don't have cancer. The "tissue" you expel when urinating is probably simply clotted blood, which looks like raw liver

My guess is that the biopsies in 2000 started all this. I think a hole was made in some small vessel in the prostate and it has never healed, or has left a "weak spot" in the prostate that bleeds easily ... not in itself significant. And I think your concern over cancer, the expelled "tissue" and the blood has led to a lot of anxiety and subconscious tensing that in turn has resulted in pelvic myoneuropathy/chronic pelvic pain syndrome.

Welcome.

[rider fan]

I concur with the 'tissue' being clotted blood. I noticed this 'tissue' in my semen once and was worried about it until my wife told me she's seen the same thing during her period.

My advice is to do lots of reading on the site and start trying some things out for yourself.

Good luck and try to stay positive!

[Richie]

This is a good place to start:

https://ucpps.men/chronic-prostatitis-is-a-psychoneuromuscular-condition

And lose the coffee. Sorry, coffee was my favorite too.

[LightningTree]

This is a tough story because you are presenting a physical symptom that neither I nor my twin brother had, namely regular urinary bleeding.

You have a history of kidney stones. You present bleeding quite frequently, and you are and older male. As a layperson, I am suspicious that you have a specific injury that is bleeding, and I would advise you find a 'go to' doctor willing to 'go to' the source of the bleeding. But that's just my commoner's advise.

Understand that chronic prostatitis / chronic pelvic pain syndrome Is a blanket label of last resort. It is by no means an incurable problem in many cases, but it is mysterious. Because you have presenting bleeding, I think you should have a doctor follow it to its source in order to get the most information you can from your condition.

A side thought: did you ever have a vasectomy?

In the meantime, check out this site and look into dietary modifications, Stanford/Wise-Anderson Protocol, etc.

Here's a question for you. YOu describe a diffuse or hard to place pain. Where abouts does this pain appear in your pelvis?

Some more advise in the interim: Don't panic. It sounds like you are doing a good job of keeping your life going. But I know how penile pain can be a real depressing thing. A lot of us here have that. My brother had it for 4 years before he got better. I had it for 2 years. Its a tough one. Key to removing the penile bee-bee sensation and so forth appears to be relaxing the sphincter between the bladder and the prostate. This is a complex little group of muscles that doctors don't fully understand yet. (They still fight about how many muscles there are, when recent studies by young ignored doctors have demonstrated that their number and structure differs between people, similar to how different people have different types of earlobes.) Relaxing the bladder and this sphincter will help calm your symptoms down.

To relax the bladder and its sphincter, I recommend the following: Lie on your stomach (this is most fun while out in the sun somewhere.) Try to relax your pelvis. When you feel the need to pee, get up immediately and do so. Do this as many times as necessary until you can relax and not pee. Lay there for a while. Try making sure your anus is relaxed as well. This often provided me relief if I gave it 15 or 20 minutes. See what happens.

In addition to the coffee, I found that avoiding alcohol, even in moderation, cut down on the penile burning sensation. See what happens for you.