Ultrasound caused me unnecessary stress...

[SickofCP]

Hello all...

I haven't really been posting much for a while. Actually I started to notice that reading posts added stress about my condition, which would often caused flares. But just to give you my update...

Mostly my chronic prostatitis / chronic pelvic pain syndrome has been manageable over the last year, although I had a hard time towards the cold months of winter (Jan, Feb).

My first uro basically gave up on me and referred me to an accupuncturist who is also a urologist. I went through the full course of 12 treatments, and although I probably did improve during that period, I don't believe that the accupuncture helped me at all. It sounds funny to say that, but I'm convinced that it did not help. Basically though I started seeing him after a bad flare, which would have gone away anyway, so you can't really measure my success on the basis that I was better at the end than at the beginning. Overall I would not recommend accupuncture. I feel like I wasted my money on it, but at least I tried.

I then got referred to one of the top uros in Toronto, but all he does is send you to some guy (nurse?) who specializes in CP/CPPS, but is not even a doctor. I never even saw the uro. The best part is that since he's not a doctor, it's not coverred under the provincial medical Plan, so I have to pay. It's not a lot of money, but to me it's the principle of the whole thing. I am in pain and have the right to the public medical system (which I pay for indirectly with my tax dollars). Anyway, I guess that's besides the point here.

So far I'm disappointed with this clinic. He gave me vioxx (anti-inflamatory), and now wants me to go on Xatral. I was on Xatral for over 6 months and did not feel that it helped. In fact I remember feeling better after I went off of it. I told him this, and he still thinks I should be on it. Since it doesn't help me, I don't want the side effects. Besides I've been basically flare free for close to a month now.

THEN he wanted me to have a pelvic ultrasound, which I had never had. I had it a couple of days ago. The technician (the most unfriendly person I've ever seen). I tried to be friendly with the guy and he didn't even talk to me, besides his computer-like commands (BREATH IN...BREATH OUT...LIE ON YOUR SIDE). He spent maybe 2 minutes looking in my pelvic area and suddenly he starts to check my chest area for about 25-30 minutes. I'm thinking "hey dude...the problem is down there". But his silence is scaring the crap out of me.

Then I wait to see the nurse guy who is supposed to give me the results. He tells me that he went over my results with a urologist (who I don't get to see), but first he wants to ask me some questions. He asks me how I'm doing, etc. with respect to my pelvic pain. I ask him about the ultrasound and he seems very hesitant to tell me anything. I start sweating. He then starts asking me if I have chest pains, difficulty breathing. Finally he tells me that I have the same amount of fluid around my heart that a 70 year old man with heart problems would have. I'm 33. He said he would send the results to my family doctor and that he can't comment further because he's not a heart specialist.

Then he says that I shouldn't worry about that for the moment, because I have my chronic prostatitis / chronic pelvic pain syndrome to worry about! Let me ask you guys a question...If somebody told you you had a heart problem, do you think your chronic prostatitis / chronic pelvic pain syndrome would take a back seat for a moment? I do. When I left his office I was thinking that my 3 year old son is going to lose his father at a young age, and I was extremely upset, and extremely stressed. I didn't give a crap about my chronic prostatitis / chronic pelvic pain syndrome at that moment.

I saw my family doctor the next day who assured me that it's probably nothing, but sent me for an echocardiagram. The very nice echo technician says that I have only a trace amount of fluid around the heart which may be from a viral infection. I have been fighting a cold over the last week. She says a trace amount of fluid is not unusual. I'm waiting for my doctor's opinion, but I certainly feel a lot better. This technician was laughing that someone told me that I had the amount of fluid of a 70 year old with heart problems.

Oh and guess what, the pelvic ultrasound showed that after I urinated I still had urine in my bladder. Wow, they proved that I'm not emptying my bladder! So impressive isn't it. Of course since I drank like a fish as instructed before the US, my bladder was filling up the whole time anyway.

Sorry guys, just needed to vent a little.

[MS]

You seem to have your priorities straight.

Have you taken anything for your stress or anxiety (e.g. Valium or Buspar or an anti-depressent)?

Please keep us posted on your progress.

[SickofCP]

I don't think I typically have more stress or anxiety than a normal person. Other than when somebody is more or less telling me that I'm dying. I think it was normal for me to feel stress under that situation, and I don't want a drug that would prohibit me from feeling stress about such a serious thing.

However, like most of us here with CPPS, I internalize any stress that I have, and need to learn to stop tensing my pelvic muscles.

Very similarly I clench my jaw / grind teeth, and wear a mouth guard at night to protect my teeth. My feeling is that this tendancy is not very different to what I am doing with my pelvic muscles, but the consequences are worse.

[SickofCP]

Incidentally, before the ultrasound I was on Vioxx for about a month. I've just been reading that Vioxx can cause heart problems. Does anyone think this may be what caused the fluid around my heart?

[Resu]

... I then got referred to one of the top uros in Toronto...

Who exactly did you see? I've seen two URO's in Toronto and neither was any help

[SickofCP]

I got referred to Dr. Jarvi, except I didn't actually ever see him. He sends chronic prostatitis / chronic pelvic pain syndrome patients to the clinic at Mt. Sinai. Unfortunately the person you will see seems very negative to me, which is not what you need. On the positive side he seems to be aware of many different available treatments (although not the Stanford/Wise-Anderson Protocol).

His negative attitude gets to me. I started saying that I'm hoping in my lifetime there will be a breakthrough for this condition. He just made a look like he really doubts that. You can't say that about any condition to someone who is in their early 30's. Is it so unrealistic that there will be a major breakthrough in the next 50 years? I don't like when people are not positive. After reading Dr. Wise's book, I was very impressed on his positive outlook. I think it's important to be positive about your condition and accept it as part of you rather than something that gets in the way of who you are.

The guy at Mt. Sinai (I'd rather not mention his name) that you would see is not a doctor. I find that after I see him, I'm upset about my condition rather than hopeful.

What all of us need in our medical care is someone who really cares. Since most of these guys are not truly helping us, it would be nice if they at least cared.

Wouldn't it be nice if a urologist said, "ok, we'll try to go this course and let's hope that I can help you. In the meantime, keep a positive outlook on your life. Do things that you enjoy. Don't get too discouraged if something is not working for you."

[webslave]

The medical system in every country has its fair share of misanthropes and f-wits. You can't let them get to you. WE are the people to whom you should be listening.

Hey, I never feel pelvic pain anymore, and I used to be disabled with it. Go tell that to your "friend". :laugh:

[SickofCP]

Thanks Mark.

Any thoughts on whether the Vioxx I was taking caused the fluid around my heart (pericardial effusion)? It's not a large amount, but it did scare me. My family doctor thinks it's from a virus and thinks that with many viral infections people get some fluid around their heart.

I have had a cold over the last couple of weeks, but I've been reading that there are cardiovascular adverse reactions to Vioxx. Some involving heart attacks. I was on vioxx for about a month before the ultrasound. I've stopped taking it because I believe that it may be the cause. However, both my "friend" at Mt. Sinai and my family doctor do not think that vioxx would do this.

Since vioxx was helping me, it's a shame if I can't continue taking it. But if it's causing problems with my heart, it's obviously not worth it.

[webslave]

I took Vioxx recently for back pain (hurt myself lifting a sofa), and had to stop because of liver pain. I don't trust this drug.

From another web page:

New research indicates that Vioxx may carry an increased risk of heart attack. When compared to patients who took traditional pain killers, patients taking Vioxx were as many as four times as likely to suffer from a heart attack. .... Vioxx can cause your body to retain fluid and swell. Your health care provider will decide if Vioxx is right for you, if you: retain fluids, have high blood pressure, have heart failure

[SickofCP]

I found the same information, and this is why I stongly suspect that Vioxx is what has caused a pericardial effusion in me. The scariest thing is that both the doctor who prescribed it to me and my family doctor do not think that vioxx has anything to do with it. As per their advice I should keep taking it. I stopped taking it a week ago, and I'm glad that I did. I'm convinced that had I stayed on it longer I could have had either long term heart problems or even a heart attack. As it is, I hope there is not permanent damage.

I'm seeing a cardiologist soon and will ask him if he feels there is a connection there.

[SickofCP]

Just to follow up with this. I saw a cardiologist about this. He feels that there is a definite possibility that the pericardial effusion was caused by the vioxx that I was taking at the time. The problem resolved itself, but only because I stopped taking it. Who knows what would have happened had I continued to take it.

I've seen recent newspaper articles about studies linking vioxx to cardiac problems (including heart attacks), and I think kidney problems too.

Be very careful with this drug.

[MS]

I've seen recent newspaper articles about studies linking vioxx to cardiac problems (including heart attacks), and I think kidney problems too.

Be very careful with this drug.

Especially for patients with pre-existing heart conditions. See article in Toronto Star.