UCPPS - Chronic Prostatitis/CPPS/IC/Pelvic Myoneuropathy FAQ
1. I've been diagnosed with chronic prostatitis. Please help.
That's what we're here for. You can learn a lot about this condition by taking the time to read through this FAQ and the many helpful posts in this forum and by visiting http://www.chronicprostatitis.com. The most important thing is to stay calm and learn as much as possible.
2. What is chronic prostatitis?
This basic question is often the hardest to answer because there is no consensus on the cause of this condition and its symptoms can vary greatly from individual to individual. "Prostatitis" means an inflammation of the prostate, but according to some of the latest thinking, the pain and discomfort associated with chronic prostatitis may not even originate in the prostate. See the current medical definition of chronic prostatitis and its categorization but keep in mind that the view of this condition is continuously evolving.
3. Why are there different names for this condition?
The term "prostatitis" can be too limiting to properly understand this condition. That's why we prefer using the terms Chronic Pelvic Pain Syndrome (CPPS) or Pelvic Myoneuropathy. Helping you view "prostatitis" in those broader terms will help you understand your condition much better. For instance, male interstitial cystitis is a bladder-centered inflammation, but it we believe it may be part of the CPPS. To understand the concept of Pelvic Myoneuropathy, see Question 11 for details or read our page on "Chronic Prostatitis is really a Psychoneuromuscular Condition"
4. What is the purpose of this forum?
On this forum we focus on non-bacterial chronic prostatitis, which is characterized by persistent pelvic pain of unknown origin and is also known as the Chronic Pelvic Pain Syndrome (CPPS). Men ask and answer questions here, offer support to one another and discuss a variety of possible treatments. Men who post here do not have documented bacterial infections in their urinary tract and do not believe bacterial infection is the root of their problem. This forum exists because there are other sites, such as the Prostatitis Foundation (password is "pf") that are disseminating blatant misinformation about the condition.
5. Who should not join this forum?
Please read through this FAQ and the other important posts in this forum (especially May I post my thoughts on CPPS being an active infection?) carefully. See Question 10 about other ailments that can be confused with CPPS. If you were diagnosed with chronic bacterial prostatitis (a rare diagnosis) or firmly believe that an ongoing or recurrent bacterial infection is the cause of your pain, we recommend you go to the sci.med.prostate.prostatitis newsgroup for discussion rather than join this forum.
Diagnosis & Symptoms
6. Who can get CPPS?
CPPS may affect both men and women (female interstitial cystitis may be categorized as part of CPPS, this is not certain), but we'll deal with the question here and elsewhere as it pertains to men.
CPPS tends to affect men in their early to mid-thirties. However men as young as 13-18 may be affected, as well as men over 40. If you are over 50 and experience CPPS-type symptoms, chances are you have Benign Prostatic Hyperplasia (BPH), or an enlarged prostate, a common condition affecting older men and a separate diagnosis from CPPS. See Question 10.
7. What are the symptoms of CPPS?
CPPS symptoms can range from persistent relapsing pain in the lower abdomen, penis, urethra, lower back and testicles. You may also experience discomfort or pain during or after ejaculation, increased urinary urgency, frequency and pain during urination. Fatigue is a common debilitating symptom as well. Symptoms may be mild, moderate or severe. They can come and go or remain constant. View a more complete list of symptoms at What is Chronic Prostatitis / Chronic Pelvic Pain Syndrome (CP/CPPS).
8. I have some of those symptoms but not others. Do I have CPPS?
You may. The point to remember is that CPPS affects every individual differently. You may experience urinary problems or sexual dysfunctions, or you may not. You might feel a burning sensation in your abdomen or urethra, or you might not. There is no identical set of symptoms for each man -- that is the conundrum of this condition and another reason why "prostatitis" is too limiting a term when trying to understand it.
9. How is CPPS diagnosed?
Usually urologists diagnose "prostatitis" based on your described symptoms. Few use or fully understand the term "˜Chronic Pelvic Pain Syndrome (CPPS).' There is no standard diagnostic procedure, though the doctor will often test your urine (do a urinalysis) to eliminate a UTI (urinary tract infection) or a similar infection and may examine your prostate using a simple procedure called DRE -- digital rectal exam. A DRE can help determine if your prostate is enlarged, but it cannot offer any clues as to the cause.
10. Can CPPS be confused with other conditions?
Yes, you may have a urinary tract infection (UTI) or a number of other afflictions of the prostate or bladder. Men over 50 are likelier to have Benign Prostatic Hyperplasia (BPH) than CPPS. If you have urgency and frequency of urination, you may have an overactive bladder (OAB). View a detailed differential diagnosis for prostatitis more information.
The Causes of CPPS
11. What causes CPPS?
There are many theories here. Initial trigger of your inflammation may be a bacterial infection, an autoimmune reaction or excessive physical activity. See the Causes section of http://www.chronicprostatitis.com to learn more. The latest thinking is that the symptoms of CPPS may, in fact, have little to do with the prostate. Pelvic floor muscle spasm may actually be main cause of symptoms in many CPPS patients.
12. Is CPPS caused by bacterial infection?
One of the most common misconceptions is that all "prostatitis" is bacterial in origin and that it's a sexually transmitted disease. This outdated line of thinking is unfortunately prevalent among many practicing urologists, complicating proper diagnosis and treatment. In fact a key study has shown that men with CPPS have about the same levels of bacteria in their prostates as normal men. Learn more about why bacteria are not likely to be the cause of your pelvic pain or prostatitis.
13. I have been diagnosed with "prostatitis" and prescribed antibiotics. Why am I not getting better?
Because an infection is not likely to be the cause of your pain. An initial bacterial infection may trigger CPPS, but pain often persists even after antibiotic therapy has killed the bacteria. That is the conundrum of CPPS. And since so many cases of chronic pelvic pain are not even caused by an initial infection, an ongoing antibiotic therapy will be of no value. Unfortunately many urologists continue to treat CPPS as if it were an on ongoing or recurring infection even if there's no evidence to back this up.
14. Is CPPS caused by an enlarged or "congested' prostate?
No, most men with pelvic pain do not have an enlarged or "congested' prostate while men with enlarged prostates usually do not experience any symptoms of pelvic pain. Again we need to keep in mind that at its root CPPS is not a prostate-centered problem at all.
15. Can sex or masturbation cause CPPS?
Sexual activity or masturbation, among other things, may trigger pelvic pain. That is not to say that CPPS is a sexually transmitted disease. It means that the strain of certain sexual activities could trigger persistent pelvic pain.
16. Can CPPS be cured?
This is a controversial question. Due to recent developments, the answer is becoming a more and more affirmative "yes". The fact is that effective treatment options are available, and many men with CPPS go on to lead normal lives once they find the treatment protocol that works for them. But that takes some experimentation and time. The key is to be very proactive in battling this condition and not expect the doctors or the drugs to do all the work for you.
Warning: Do not travel to see quacks who claim that CPPS is an active infection that they can cure! Ignore sites like The Prostatitis Foundation that has actively promoted such quacks on a number of occasions.
17. Will antibiotics help?
See Questions 11 and 12. An initial antibiotic treatment (1-2 weeks) can be useful in case infection was the trigger for your inflammation. But if pain persists beyond that point, antibiotics are not likely to be of help. There are some who believe that chronic prostatitis is caused by "hidden bacteria' than cannot be identified using simple means, such as a urinalysis. But even if there are bacteria in your prostate that cannot be readily identified, they are not likely to be causing your pain according to this key study on bacteria and prostatitis.
18. Why do antibiotics sometimes help with reducing pain?
Many antibiotics have anti-inflammatory properties -- they may quell inflammation and reduce pain even if there are no bacteria to kill. But using antibiotics as anti-inflammatories (without proof of infection) is not recommended due to the potentially harmful long-term effects to your health.
19. What are the treatments available for CPPS?
The good news is there are more treatment options available today than at any time before. You don't have to live with the pain forever! Medications, supplements, changes in diet and physical therapy can all play their part. But the most important thing is your active participation. Read through the Treatment section of http://www.chronicprostatitis.com for details.
20. Will I get better with proper treatment? How long does CPPS take to improve?
Many men have reported success with certain treatment protocols, and many do get better. There is no set timeframe for success. Improvement may be slow and incremental; it may take weeks, months or years. Or, if you're lucky, it may be swift. The most important thing is to keep persevering, and never give up! The pain is real, it is not in your head, but a positive attitude to pelvic pain can do wonders to help you achieve success.
21. How do I know which treatment is best for me? Where do I begin?
Read this forum and visit the http://www.chronicprostatitis.com website to learn about your many options. It is also crucial that you see a urologist for an initial assessment and that your doctor is open-minded with at least some up-to-date knowledge of CPPS. This way you can discuss the viability of certain treatment options based on your individual symptoms. If your doctor simply writes you a prescription without listening to what you have to say, or seems to have little idea of the range of treatments currently available, find a new doctor. You and your doctor should work together on this, so as with any partnership, it has to be the right one.
22. Do you recommend any one treatment?
No, we do not. We do have a list of prostatitis and pelvic pain "Tips" but that was compiled some time ago and we encourage you to learn about the variety of treatment options available, especially by joining our forum.
23. Are there treatment centers or clinics for CPPS patients?
See our clinics subforum.
24. What are some other resources for understanding & treating CPPS?
One excellent resource is the book Headache in the Pelvis and the Wise-Anderson Protocol, a recommended reading for anyone with CPPS.
25. How important is my diet if I have CPPS?
Certain foods can trigger pain or urinary symptoms. For many, culprits include acidic foods, sugar, alcohol and caffeine. Others find that wheat causes problems. Therefore a right diet can be a very important part of your treatment. But there are no exact guidelines here. You'll have to see what works and doesn't work for you.
26. How often should I ejaculate if I have CPPS?
Ejaculation can trigger pain or discomfort for many men with CPPS. However you don't need to drastically cut down on or stop ejaculating altogether. Do it as frequently or infrequently as you feel comfortable, keeping in mind that moderation is the best rule of thumb for this and many other activities.
27. Can CPPS lead to prostate cancer?
This should not be a major concern. In fact, there's some evidence that men with CPPS have a slightly lower risk of getting prostate cancer than men in general. See out page on prostatitis and prostate cancer.
This FAQ was written by Dave (alphacentauri) and reviewed by forum management.
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