This is going to be a long post. It's long because it includes a ton of information I wish I'd had a year ago on how to learn about the science of urology and pelvic pain syndromes.
Introduction
One of the most frustrating things I have encountered as a chronic prostatitis / chronic pelvic pain syndrome sufferer is the feeling of being helpless, and having to wholly depend on others whenever I noticed something about my symptoms. I came up with many theories about my own condition, but these were based on my simplistic notions of how the body works. ("Shouldn't massage loosen up my bladder muscles?") My old theories were folksy and unscientific. I read a ton, but never in a structured, educational way. I didn't feel I was really becoming an "expert."
A while ago, I wondered how I can gain medical knowledge so that I could know what a urologist or other expert knows about the causes, pathophysiology, and treatment of urologic conditions. At the time I thought that this knowledge was only available behind the closed doors of medical schools, and that it would take me a decade to learn what a urologist knows about my condition. Not so! Most of this information is available to anybody who is willing to hit the books and work hard. I am now at the point where I feel I have a solid enough foundation to be able to understand many of the things that are happening with my body, and to critically evaluate new information I come across. I can't tell you how empowering it feels, and how far I feel I've come in terms of conquering my own condition.
If you are in a situation where you have symptoms, have tried different therapies without success, and feel that your condition is a tough nut to crack, I strongly recommend that you learn about the science yourself instead of depending on others to spoonfeed you. Urologists are great, but here's the problem: for the most part, urologists do not want to play detective. (Note: several exceptional urologists I know -- especially those involved in basic research -- are, well, exceptions to this rule.) If they wanted they could spend time sitting down and trying to put together all the pieces of evidence you present them with, but this is not what urologists want to spend their time doing. I have gone to several big-name doctors with a paper listing all of my symptoms only to have it completely ignored.
You are the only person who is willing to sit down for hours thinking about what could be causing your personal condition. You are the only person with the motivation to do so. All that is missing, in most cases, is the necessary knowledge. Here are my recommendations on how to get that knowledge.
Side note I: the encouraging thing is that the more unconventional, confusing, and seemingly intractable your symptoms are; that is, the more it feels like you are the only person with your specific set of symptoms, the more an approach like this is likely to help you.
Side note II: This is not a "protocol." This is not a course of treatment. This is a plan for educating yourself about the basic science of how the body and the pelvis work (or don't work), so that you can better understand what is going on with your health condition.
So here is my "syllabus." If anybody thinks of more texts or resources that are important for newcomers to read as part of their scientific/medical self-education, feel free to add them.
Part I: Anatomy/Physiology/Pharmacology
In order to understand much of the relevant literature out there, you simply need to know where the body parts are and what they do. Here's how to do this.
Get two general books on anatomy (if they're not in the library, buy them; it's worth it for the sake of your health). The first should be an easy introductory text, such as Clinical Anatomy Made Ridiculously Simple. The second should be a reference text, like Clinically Oriented Anatomy by Moore and Dalley. Start with the easy text just to get the basic ideas. Then, move on to the reference and learn the stuff cold. Read the section on the pelvis. Here you'll learn about the structure of the pelvic floor, the organs of the genitourinary tract, the innervation and blood supply to the pelvis, and some basic physiology. Then read the section on the nervous system. It's important to actually learn this information rather than just skim it and forget the terms the next day. Given that there's so much terminology to learn, forgetting is very easy to do. So, look at the anatomical diagrams, memorize the names of all the body parts, and then cover up the words with a paper and try to name all the body parts yourself. Keep testing yourself until you're solid.
If you haven't already, read A Headache in the Pelvis. This will teach you more about theory behind the Stanford/Wise-Anderson Protocol. This forum is obviously a very good place to ask questions about the SP.
Learn about other relevant fields. These include physiology, neuroanatomy, and pharmacology. A good primer on these topics is Lippincott's Illustrated Reviews. Again, quiz yourself to make sure you've learned everything.
Part II: Urology
Now comes the time to learn about urology from a credible source. I recommend getting your hands on a copy of Campbell's Urology. This book is considered the "bible" of urology. Read whatever sections of this book you think might be relevant. Those could include prostatitis, interstitial cystitis, voiding dysfunction, urodynamics, and whatever else might be relevant to your condition.
Then, you are ready to dive into the medical literature.
Part III: Reading medical journal articles on CPPS
The next step is to read medical journal articles on CPPS.
Getting access to articles
If you are at a library, university, or other institution that has access to full-text journals this process works much better, as you will be able to link to the full-text articles from the abstracts, but you can still learn some valuable information from abstracts. Find out if there is a special way that your institution can access the articles, such as an OpenURL resolver.
Go to PubMed and start searching for and reading articles. Some points on this:
Learn to use PubMed's MeSH feature! It's a very valuable tool that will save you lots of effort. Once you have found the terms you're searching for in MeSH, search for them using boolean logic. For instance,
Code: Select all
"Prostatitis"[MeSH] NOT "Prostatitis/microbiology"[MeSH]Code: Select all
"Urinary Retention"[MeSH] AND "Adrenergic alpha-Agonists"[MeSH]If you're a newcomer to the field, many papers will not do you much good. They will be either too complex or to specific, like clinical trials. So, in your search results, click on the "reviews" tab to get all the review articles. Review articles are essentially summaries of the state of knowledge in a field, a bit like the summaries linked to on the main page of this website. Very good to help newbies understand the health condition.
Now comes the fun part for the medical detective. You get to study your own individual condition and set of symptoms.
Doing the research
Once you've read the relevant reviews, and have more specific areas of interest, you can proceed to general research articles.
The amount of information you come across will be simply overwhelming. Use a free online research management tool like CiteULike to tag individual papers, make comments and notes to yourself, and indicate whether you've read a particular paper.
Putting the information together
So now you will have a ton of papers and research information. How will you hack through it to get the information you need?
Make an outline using a program like Word. (Use MS Word's special outline format that allows you to collapse and expand text; I think it's views > outline view.) Better yet, download FreeMind(which is free) and put your knowledge into a big mindmap. This will allow you to display your knowledge graphically and draw arrows linking different things, etc.
Start with a general tree with categories like "Muscular symptoms", "Medication", "Urination", "Miscellaneous symptoms", and so on. Every time you have a question (e.g. "why do alpha blockers reduce urinary hesitancy?), type it in its proper category, and when you eventually find the answer, write it in the appropriate spot.
Your outline will gradually expand, and so will your knowledge. One day, you'll realize that you finally know what you're talking about.
Make tables to organize your knowledge. For example, I made a table where the different adrenergic receptors (alpha1, alpha2, beta1, beta2 ...) were listed across the rows, and the different parts of the urinary tract were listed down the columns. In each cell of the table I entered the level of expression of that receptor in that body part, along with its action (e.g. excitatory, inhibitory).
With hard work and luck, you'll start to see something come together, and will finally come to understand what kind of thing is going on with your body.
You will be stumped many times by seemingly contradictory evidence, or by gaps in the medical literature. If you have a question, ask it here! There are plenty of smart people in this forum who will help you clear up your misunderstanding.
Good luck!
Update for 2007:
Here's some new stuff I want to add.
Getting access to free full-text articles
One way to do this is by going to PubMed, clicking on the "Limits" tab, and checking the box that says "links to free full text." That way, when you search for articles, it'll return only articles that are freely available without a prescription.
Good authors/articles to read on CPPS/IC
Rodney Anderson and David Wise have written several articles, but they do not do much explaining the science behind CPPS. Here are some rsearchers who have done significant work on topics relevant to CPPS/IC:
-JC Nickel
-RA Schmidt
-R Doggweiler
-CJ Fowler
-MB Chancellor
-KM Peters
-R Alexander
Google Scholar
For those of you who read articles on PubMed, I suggest trying Google Scholar (scholar.google.com). I find it makes it easier to find what you want. It has some neat features that PubMed lacks, such as full-text search, and sorts articles in a smart way (articles that are more reputable, recent, and relevant come first).
HealthVault
Microsoft recently came out with a service called HealthVault. Among other things, it has a nice interface for doing health-related searches. Definitely beats Google. It's available at http://www.healthvault.com/.