Benzodiazepines and CPPS

[CppsDad]

Find a good urologist and trust his judgement.

I agree with Mastcells. The one thing this board has shown us is that urologists uniformally do not understand CPPS, AT ALL. It would be one thing if half of users on this forum reported good success with their urologists, and the other have didn't. Then, we could at least suggest to someone to find another urologist. But from my general time as a moderator, I'd say the percentage of positive urological consultations is probably LESS THAN 5 PERCENT. That's ridiculous. And it's not a coincidence. Urologists do not understand pelvic myoneuropathy at all, and will just harm most patients who continue to see them for it. The amount of antibiotics the patients are prescribed are just the beginning of story. Just the start. The patients are then subjected to painful procedure after painful procedure, getting cystos, trying more drugs, electrical stimulation, more drugs, prostate massages, more drugs, and for the very unlucky, surgical procedures to move nerves, tissue, or worse.

Urologist should be used to rule out other, more serious conditions. But if you think that they are helpful as a group, and that we should trust their advice, you haven't had the experience of 95% of the sufferers here. I've seen 3 urologists personally, and 2 of them told me "you just have to live with it", and the other told me "it will just get better on it's own". Boy were they wrong. And that's the way it goes for most of us. My physical therapist knew more about this condition than my doctors. They don't know how muscles relate to urological pain. How many ED patients are suffering from pelvic myoneuropathy, bu the doctors just prescribe Viagra? They don't even THINK to suggest that perhaps the person is experiencing lack of blood flow due to tension in the pelvic floor. Crazy. I can't wait until THAT research paper comes out. Then suddenly the SP will become a mainstream treatment.

Doctors are not more knowledgeable than the users of this forum regarding CPPS. We know far more than they do. We explore all the physiology in the region. We share treatment suggestions, and know what works for some people and others. We discuss drug results, side-effects, and even allergies. Many of us have read and re-read Gray's anatomy, and other books on urology. It's amazing how the doctors always seem to stick to the stuff from chapter 1 in those books. Do they read these books passed the first chapter? I just smile when they tell me stuff that was accepted as truth 25 years ago, when all the new urology papers being published are showing the opposite. They are not well versed in current literature. They do not seem to want to learn. They do not seem to care. I personally scored higher in most of my classes in college than any of my friends who became doctors. Why are they more capable of learning than I am?

Perhaps in 25 years, urologists will know what the heck they are talking about with CPPS, but for now, no thank you. I'll trust Dr. Wise, as he doesn't make stuff up.

And for the MD's on this forum who DO get CPPS, you should be commended for going against the grain your fellow doctors seem to tread. Take yourself, and your career seriously, and accept the fact that other people that don't have an MD after their name can teach YOU something as well.

Mike

[Ralph]

Mastcells,

I feel your pain (no joke really intended). I understand your frustration as does amother MD on this board who has become my friend. You're right, uros don't like to "treat" CPPS. I had this very discussion with my uro who is also my personal friend. He admitted that he hates this problem. There is no good treatment which works for everyone. In many ways cancer can be easier to treat (not that I want that). Still, it is important to role out other serious and potentially curable problems. A good uro is very important. Beyond that, they can't offer much and a good one will tell you so. It's just hard to hear it. This forum has been far more helpful to me than any other "professional". I told my uro about this website and showed him "Headache in the Pelvis" so he could have a copy in his office for his patients. Your frustration is genuine and I more than understand it. Wish I didn't.

As for your comments about Benzos, I couldn't agree more. Well stated.

[CppsDad]

A good uro is very important. Beyond that, they can't offer much and a good one will tell you so

This is very true. Yes, you want a good urologist who can rule things out. But even if I had my wish, and all urologists understood chronic prostatitis / chronic pelvic pain syndrome better than I did, the truth is, there's not much they can do to help you. This condition requires a number of protocols that require self-management, and your doctor can't help you there. Other than giving your literature and telling you the problem's possible sources, you have to do the stretching, relaxation, massage, and therapy someplace other than the urologist's office, at least until they come up with some machine that can zap out your trigger points and stretch your troubled areas.

And for the doctors on this forum - I apologize (a little) for my earlier rant. Please understand that if you are on this forum at all, you already don't fit in the group of urologists that I was talking about, as you are either a sufferer yourself, or you are willing to learn. I got riled up, and thinking about my urological visits and trips to my general practitioner brings back bad memories of a time when I was ignored, felt persecuted for asking for meds, and was shunned by the medical staffs at two different hospitals. Thank god for this forum and those who are really trying to make a difference to help us. I may be a moderator, but as a current sufferer, I get more out of other people's postings than anyone can know - far more than any doctor, good or bad, could have ever offered me.

Mike

[webslave]

I got riled up, and thinking about my urological visits

It took me several years to get over the anger at my treatment at the hands of urologists, but in the end I realized that the anger was doing me more harm than good. Now I feel a degree of compassion for them, since so many of them are in the uncomfortable position of not knowing much about all this and not being able to help patients like us very much.

However, it should also be noted that there are some uros who are right up with research, tell their patients to use Quercetin, advise tension reducing strategies, suggest PT. It's rare, but not unknown.

[GS]

I am a doctor of veterinary medicine. So, I have much of the same training as MD's but my patients can't explain their symptoms to me. I have extensive training in pharmacology so I understand how all of the drugs prescribed for chronic prostatitis / chronic pelvic pain syndrome work physiologically. In fact, I deal with a similar problem in cats. The point that I was trying to get across was that we should not be dealing with this condition by ourselves. I really think it is important to find a progressive thinking urologist to help us resolve this condition and conduct research studies. I think the Stanford team is on the right path. I have personally seen Dr. Wise and Tim Sawyer. I am following their protocol and have improved dramatically over the past 2 years. In order to receive the trigger point therapy, a prescription is needed every 3 months where I live. Fortunately, I have a urologist who has bough,t into the Stanford/Wise-Anderson Protocol and provides these prescriptions. I must admit at first he was skeptical of the protocol, but after seeing my response, he has referred other patients for PT. Now, he agrees that pelvic myoneuropathy is probably the cause in a large number of prostatitis patients. This willingness to accept new theories and treatments is what we need from the urological community. We should not shut them out as ignorant. As a medical professional myself, I know that we are looking for valid proven results of scientific studies before we can recommend treatments with confidence. Dr. Wise himself says the condition is best treated with a team approach including urologist, physical therapist and psychologist. I sympathize with those of you that have poor urologists. The first urologist that I saw gave me Cipro and when I went back to him for a recheck said that there was nothing more he could do for me. That left a real sour taste in my mouth, especially since he was a fellow Cornell alumni. Fortunately, I did not give up and found a more sympathetic urologist. Also, the forum has been very helpful in guiding me to the Stanford team in the first place. So, thank you to all involved in the forum, but I urge you not to use the internet as your sole source of information. I still think a good doctor is imperative.

[CppsDad]

I agree. A good doctor is very imperative. It's too bad we can't all find good doctors. My health plan doesn't allow me to switch urologists whenever I want.

However, I wouldn't trust the judgment of a urologist at all in this matter, unless he proved to me he know the inner workings of CPPS. Yes, the internet is a terrible place to base information on. But I think this forum is generally above the general amateurishness and inaccuracies that plague most of the internet. This forum advocates ideas based on the research of doctors and urologists that are experts in this area. We aren't a dangerous or ignorant group, for sure. Quite the opposite.

Mike

[Ralph]

I take 10 mg of valium every other day. This works very well and prevents addiction.

and

Originally I was on 4 mg daily. I am a doctor myself and need to have my brain working at a high level on a constant basis and I have not seen any problems with the valium at this dose. In fact the labeled dose is up to 40 mg daily so 10 mg every other day is a very small dose

It's comments like these that make the internet a dangerous place.

[londoner]

I agree. If you are taking 10mg Valium every other day for a significant period of time - i.e. months - , you're addicted and you need some medical assistance in getting off it.