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

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

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.

 

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

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.

Holmes and Rahe Stress Scale

Life Event Value Check if this applies
1 Death of spouse 100
2 Divorce 73
3 Marital separation 65
4 Jail term 63
5 Death of close family member 63
6 Personal injury or illness 53
7 Marriage 50
8 Fired at work 47
9 Marital reconciliation 45
10 Retirement 45
11 Change in health of family member 44
12 Pregnancy 40
13 Sex difficulties 39
14 Gain of new family member 39
15 Business readjustment 39
16 Change in financial state 38
17 Death of close friend 37
18 Change to a different line of work 36
19 Change in number of arguments with spouse 35
20 A large mortgage or loan 31
21 Foreclosure of mortgage or loan 30
22 Change in responsibilities at work 29
23 Son or daughter leaving home 29
24 Trouble with in-laws 29
25 Outstanding personal achievement 28
26 Spouse begins or stops work 26
27 Begin or end school/college 26
28 Change in living conditions 25
29 Revision of personal habits 24
30 Trouble with boss 23
31 Change in work hours or conditions 20
32 Change in residence 20
33 Change in school/college 20
34 Change in recreation 19
35 Change in church activities 19
36 Change in social activities 18
37 A moderate loan or mortgage 17
38 Change in sleeping habits 16
39 Change in number of family get-togethers 15
40 Change in eating habits 15
41 Vacation 13
42 Christmas 12
43 Minor violations of the law 11

 

Your Total  

Note: If you experienced the same event more than once, then to gain a more accurate total, add the score again for each extra occurrence of the event.

Score Interpretation

Score Comment
300+ You have a high or very high risk of becoming ill in the near future.
150-299 You have a moderate to high chance of becoming ill in the near future.
<150 You have only a low to moderate chance of becoming ill in the near future.

What You Can Do About This

If you find that you are at a moderate or high level of risk, then an obvious first thing to do is to try to avoid future life crises.

While this is clearly easier said than done, you can usually avoid moving house, for example, close to when you retire, or when one of your children goes off to college; you can learn conflict resolution skills to minimize conflict with other people; you can avoid taking on new obligations or engaging with new programs of study; and you can take things easy, and look after yourself.