ucppsProstatitis, CP/CPPS, Interstitial Cystitis, IC/PBS

  • Overview
  • Research
  • Resources
  • Discussion Forums
  • Assessment
  • NIH CPSI

What is UCPPS?

In 2007, the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) began using the umbrella term "Urologic Chronic Pelvic Pain Syndrome", or UCPPS, to refer to pain syndromes associated with the male and female pelvises. Previously, the female version was called interstitial cystitis/painful bladder syndrome, or IC/PBS, and the male version was called chronic prostatitis/chronic pelvic pain syndrome, or CP/CPPS. Many doctors still use the old terms.

Are all forms of UCPPS the same disease?

That's what current research is attempting to find out. There are good reasons to suspect that they are, in other words that there are few differences, at the primary etiology level, between chronic painful prostate ("prostatitis") and chronic painful bladder ("cystitis"). Indeed, the central roles of the bladder and prostate in these disorders is questionable. For instance, when both men and women in the general population were tested using the (1) National Institutes of Health Chronic Prostatitis Symptom Index or NIH-CPSI (with the female homolog of each male anatomical term used on questionnaires for female participants), (2) the International Prostate Symptom Score (IPSS), and (3) additional questions on pelvic pain, the prevalence of symptoms suggestive of CP/CPPS was 5.7% in women and 2.7% in men, placing in doubt the role of the prostate gland.

What is the likely cause of UCPPS?

The most recent research has uncovered some intriguing clues as to the root cause of this enigmatic constellation of pain syndromes. These clues relate to cortisol levels in response to stress, genetic enzyme deficiencies, neurogenic inflammation, and myofascial pain syndrome. The psychological aspect of stress is implicated in several of these studies, and in susceptible individuals, stress seems to be able to trigger various hormonal, neurological and neuromuscular phenomena that result in chronic pain and allodynia in the pelvis and pelvic organs.

Any further major breakthroughs will be highlighted on this page as they become available. Bookmark and check back.

The latest news is the July 2008 meeting: Defining The Urologic Chronic Pelvic Pain Syndromes: A New Beginning - An International Symposium.

 

Prostatitis and Interstitial Cystitis Research

nih Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network

nih Prostatitis: Clinical Trials

nih Interstitial Cystitis: Clinical Trials

pubmed Find the latest research on PubMed

Selected papers on Prostatitis and CP/CPPS

US Government

niddk The NIH/NIDDK

Community Encyclopedias

wikipedia  on Prostatitis

wikipedia  on Chronic Prostatitis/Chronic Pelvic Pain Syndrome

wikipedia  on Interstitial Cystitis

Community-based (English)

Interstitial Cystitis

The IC Association

Prostatitis and CPPS

The CP/CPPS Network

The British Prostatitis Support Association

Community-based (French)

Prostatite Chronique

Community-based (Italian)

AISPEP - Associazione Italiana Sindromi Pelvico Prostatiche

Prostatitis and Interstitial Cystitis Discussion Forums

English

Men - Prostatitis, CPPS, Interstitial Cystitis, Pelvic Myoneuropathy Forum (Fee required)

Men - The Prostatitis Forum (Free)

Women - Interstitial Cystitis Information & Support

German

Men - Deutsches Medizin Forum - Prostatitis

Italian

Men - AISPEP - Associazione Italiana Sindromi Pelvico Prostatiche

 

Assessment and Phenotyping of Symptoms

UPOINT UPOINT Clinical Phenotype for Chronic Pelvic Pain Syndrome

NIH Chronic Prostatitis Symptom Index (CPSI)

1. In the last week, have you experienced any pain or discomfort in the following areas? Yes No
Area between rectum and testicles (perineum) 1 0
Testicles 1 0
Tip of the penis (not related to urination) 1 0
Below your waist, in your pubic or bladder area 1 0
2. In the last week, have you experienced: Yes No
Pain or burning during urination? 1 0
Pain or discomfort during or after sexual climax (ejaculation)? 1 0
3. How often have you had pain or discomfort in any of these areas over the last week?
Never 0
Rarely 1
Sometimes 2
Often 3
Usually 4
Always 5
4. Which hidden best describes your AVERAGE pain or discomfort on the days that you had it over the last week?
0
no pain 		1 2 3 4 5 6 7 8 9 10
Pain bad as you can imagine
5. How often have you had a sensation of not emptying your bladder completely after you finished urinating during the last week?
Not at all 0
Less than 1 time in 5 1
Less than half time 2
About half time 3
More than half time 4
Almost Always 5
6. How often have you had to urinate again less than 2 hours after you finished urinating, over the last week?
Not at all 0
Less than 1 time in 5 1
Less than half time 2
About half time 3
More than half time 4
Almost Always 5
7. How much have your symptoms kept you from doing the kinds of things you would usually do, over the last week?
None 0
Only a little 1
Some 2
A lot 3
8. How much did you think about your symptoms during the last week?
None 0
Only a little 1
Some 2
A lot 3
9. If you were to spend the rest of your life with your symptoms just the way they have been during the last week, how would you feel about that ?
Delighted 0
Pleased 1
Mostly satisfied 2
Mixed (about equally satisfied and dissatisfied) 3
Mostly dissatisfied 4
Unhappy 5
Terrible 6
Scoring the Symptom Index Domains
Pain: Total of items 1 a, 1 b, 1 c, 1 d, 2a, 2b, 3, and 4
Urinary symptoms: Total of items 5 and 6
Quality of life impact: Total of items 7, 8, and 9
Pain and urinary score: Total of item 1 to 6
Total score:
(1) Calculate and report 3 separate scores (pain, urinary symptoms, and quality of life)
(2) Calculate and report a pain and urinary score (range 0-31), referred to as the "symptom scale score."
  • Mild = 0-9,
  • moderate = 10-18
  • severe = 19-31.
(3) Calculate and report total score (range 0-43), referred to as the "total score." Assess patients at baseline and follow them over time using each patient as his own control. Can also use to compare to "norms" established and published.