The Prostatitis Foundation

Chronic prostatitis: Results of an internet survey

 

Richard B. Alexander a and David Trissel b

a Division of Urology , University of Maryland School of Medicine, and Section of Urology, VA Medical Center, Baltimore, Maryland and the b Prostatitis Foundation , Chicago, Illinois.


Supported by a grant from the U.S. Department of Veteran's Affairs


Correspondence should be addressed to:

Richard B. Alexander, M.D.
Chief of Urology (112)
VA Medical Center
10 N. Greene St.
Baltimore, MD 21201

E-Mail: ralexander@surgery2.ab.umd.edu


Abstract

BACKGROUND: Chronic prostatitis is a common diagnosis but the etiology of this disease is unknown. We wished to catalog symptoms and etiologic factors for chronic prostatitis to gather epidemiological data about the disease. We also wished to determine the feasibility of doing this using the internet.

METHODS: A 54 question survey was designed and posted to several internet newsgroups dealing with chronic prostatitis. The questions dealt with symptoms, predisposing factors, demographic data and sexual practices. Responses were collected by electronic mail and tabulated at a central site.

RESULTS: We received 163 completed surveys over a 2 month period. Nine percent of responses came from individuals outside of the U.S. or Canada. Only 9.8% of completed surveys contained one or more unreadable answers. The responding population consisted of relatively young men (mean 43 years) with a chronic, relapsing set of symptoms mostly characterized by pain at various locations in the pelvis, irritative voiding symptoms and pain associated with ejaculation. Most respondents were potent and had a single sexual partner.

CONCLUSIONS: This catalog of symptoms will be useful in the design of a standardized instrument to resolve the population of men with prostatitis from normal men or men with BPH . The facility of conducting patient surveys by internet is demonstrated.


Introduction

Chronic prostatitis is a poorly characterized but common diagnosis. Patients have symptoms consisting of pain in the pelvic region, voiding complaints and sexual dysfunction. The gland may be tender or "boggy" on physical examination and microscopic examination of expressed prostatic fluid may demonstrate leukocytes. This constellation of symptoms and signs would suggest that an infection in the prostate gland is present. However, in only 5-10% of patients with symptoms can an infectious agent be demonstrated to be present [ 1 , 2 ]. In addition, large numbers of investigations attempting to grow fastidious organisms have failed to convincingly prove that any identifiable infectious agent is responsible for symptoms in a substantial population of patients with symptoms [ 3-6 ]. Lastly, a significant portion of men with symptoms suggestive of prostatitis cannot be demonstrated to have inflammatory cells in the expressed prostatic secretion. For example, in the series of Weidner et al [ 2 ] 255 of 528 patients with symptoms had no evidence of bacteria or inflammatory cells in prostatic secretions and were classified as prostatodynia. Thus, the view that prostatitis is an infectious disease has led to almost no clear information of use to the treatment of the majority of patients with symptoms. It cannot even be clearly concluded that the symptoms in most men are due to a disease of the prostate gland.

The only clear fact is that an enormous population of men has symptoms for which we have no explanation. In order to understand the etiology of this disease we must first objectively define who has it. To do this requires the creation of a set of symptoms, signs or both which can reliably and accurately describe men with prostatitis and resolve the affected population from normal men or men with other benign diseases such as BPH . Once such an instrument is defined one would search for differences between the population with and without the disease which might have etiologic significance. The standardized instrument allows different investigators to compare results because the population for study can be defined objectively.

With the goal of defining symptoms in men with prostatitis we surveyed via the internet men who had been diagnosed with the condition and were seeking information from public newsgroups regarding the disease. We reasoned that such a population would be enriched for those with chronic non-bacterial prostatitis or prostatodynia [7] not readily treatable by the medical community. The survey was designed to provide a catalog of symptoms and to search for potential etiological factors in such patients.


Materials and Methods

A 54 question survey asking about symptoms and potential etiologic factors regarding chronic prostatitis was created. The survey was posted to the internet newsgroups alt.support.prostate.prostatitis and sci.med.prostate.prostatitis . The survey was also posted to the general medical newsgroups of several commercial on-line service providers.

Anyone with a history of prostatitis was invited to respond. We did not attempt to distinguish patients with known bacterial prostatitis, either acute or chronic, from the survey. First, the evaluation patients receive to diagnose bacterial prostatitis is highly variable. The diagnosis as defined by Stamey [8] requires the "3 glass test" to exclude urethral organisms and this is infrequently performed in routine office practice. Second, patients might not be well informed about their own culture results. Finally, in large series of patients a clear, bacterial infectious etiology for prostatitis can be found in only about 5-10% [2] . Hence, we felt that the support newsgroups would be highly enriched for patients with chronic prostatitis mostly of non-bacterial origin and would serves as an excellent source of information of relevance to the epidemiology and etiological factors relevant to this disease. We specifically asked that patients with a diagnosis of prostatic cancer not respond.

Individuals were invited to respond to the survey by electronic mail or to print the survey, fill it out manually and return the survey by U.S. mail. This was done to allow individuals to avoid electronic mailing of private information such as the detailed sexual history. Surveys returned either by electronic or regular mail were tabulated at a central site.

The layout and format of the survey questionaire was designed to be easily read and parsed by computer software for automatic processing. As each survey response was received via standard Internet electronic mail (e-mail) it was given a file name consisting of the current date and sequence number and saved as an individual text file. A single application program written in the C language was developed to perform all processing on the surveys and to generate report files. The program had three phases: template reading, survey response processing and report generation. Phase 1 processing read a master survey template file that indicated how many questions there were and for each question the type of answer(s) expected. During Phase 2 the program read each user survey response text file. As each question was encountered the master template would be examined to verify the question number and determine the type of answers expected in the user response. All abnormalities were noted in a special report log file and questions with unparsable or invalid answer types were treated as unanswered questions. Valid answers were used to update internal statistic counters for the final report. During Phase 2 other automatic verifications were performed. All Internet e-mail has a point of origin address, much like the return address on regular postal mail. The point of origin for each survey response was compared with all others to prevent the accidental processing of any duplicate surveys. Finally, Phase 3 computed various statistics for each question and produced the final report file. It also produced a separate report file for each essay question containing all user responses for that question.

The full text of the posted survey is available at our World Wide Web page: http://www.som1.ab.umd.edu/SurgeryUrology .


Results

Between October 24, 1995 and December 31, 1995 163 completed surveys were returned. The cumulative frequency of returned surveys is shown in figure 1 . Only 16 (9.8%) of the completed surveys had one or more invalid answers. A response was considered invalid if the question was left unanswered, if more than one answer was marked for a question requiring a single answer or if the type of response was not valid for a question, such as a Y or N response to a question requiring a numeric answer.

Demographics

The respondent population had a mean age of 43 years (STD 10.4, range 21-74, N = 161). The distribution of ages is shown in table 1 . The majority of respondents were Caucasian (94.5%) as shown in table 1 . Most responses came from the U.S. (87%) with responses from other countries shown in table 1 .

Symptoms

Respondents were asked to choose symptoms from a list and to rank those they chose by severity. The results are shown in table 2 . The most frequently reported and most severe symptom was pain in the pelvic region followed by urinary frequency and obstructive voiding symptoms. The location of pain is shown in table 3 . The most frequent site of pain was the perineum, described in the question the area between the scrotum and anus. The second most common reported site was deep to the anus.

Responses to questions about the onset and episodic nature of symptoms are shown in table 4 . The respondents had been symptomatic a mean of 6.5 years. In 11% the symptoms were constant but in most the symptoms were episodic with symptoms diminished or absent between flare-ups. In 37% of respondents the symptoms could be related to a particular physical activity such as sitting or driving.

Voiding symptoms

We administered the AUA symptom score to respondents. The respondent population had a mean AUA score of 13.2 (median 13, STD 7.3, range 0-35, N = 163). To determine the contribution of obstructive and irritative symptoms to this score the questions were separated into obstructive symptoms ( 4 questions) and irritative symptoms (3 questions) and the responses tabulated separately. These total, irritative and obstructive scores were normalized to the maximum possible score for each set of questions. The histograms of these normalized total, irritative and obstructive symptoms are shown in figure 2 . The irritative questions contributed more to the overall symptom score than did the obstructive questions (mean (STD) normalized AUA irritative score 41 (22) versus normalized AUA obstructive score 35 (26), p = 0.03, Student's t test).

Sexual activity

The survey included detailed questions about sexual activity before and after symptoms. Using the AUA symptom score grading scale of 0 to 5 the responses to inquiries of potency are shown in table 5. The majority of men were potent. Responses to questions about the frequency of sexual activity before and after the onset of symptoms are shown in figure 3 . There was a minor shift toward a decrease in sexual frequency in men after the onset of prostatitis.

Responses to questions about ejaculation are shown in table 6 . Most patients reported no major change in their experience of ejaculation after the onset of symptoms. However, pain was reported as part of ejaculation by the majority of patients. Of 161 patients who responded 63% reported pain before or after ejaculation.

Sexual contacts and frequency

A common belief about this disease is that it is caused by promiscuous sexual behavior or anal intercourse. We asked about the frequency and type of sexual contact patients had before the onset of their symptoms. The results are shown in table 7 . The majority of patients reported that they had a single sexual partner before the onset of symptoms. Only 10% of respondents reported anal intercourse.

Other predisposing or associated etiological factors

Only 19 of 162 respondents (12%) reported that they have a relative with prostatitis. An associated immunologic disease such as severe atopy, joint disease or a disease regularly cared for by a rheumatologist was reported by 47 of 162 responders (29%).

Impact upon quality of life

Seventy eight percent of respondents reported that they had experienced some degree of depression because of their symptoms with 5% admitting to thoughts of suicide because of this disease. Half of the respondents had missed some work because of their symptoms as shown in table 8 .



Discussion

This survey is not a validated instrument to resolve men with prostatitis from normal men or men with BPH . This survey was performed only to produce a catalog of symptoms of prostatitis that can be used to help create such a questionnaire or instrument. Any questionnaire or instrument which is designed to resolve a population of patients must be validated to prove that the instrument does, in fact, do this by comparing the results of the scores obtained in the subject population to the results in control populations.

We posted a 54 question survey via Internet to several newsgroups read by patients with prostatitis and asked any patient who had been diagnosed with the disease to complete the questionnaire. Over a 55 day period we received 163 completed surveys with only 10% containing any invalid response. The responses describe a chronic, relapsing syndrome in younger men consisting of pain in the pelvis, especially the perineum, irritative voiding symptoms and pain with ejaculation. We did not find a striking association with a particular physical activity, any data to suggest that such men are particularly promiscuous or any association with anal intercourse, commonly held perceptions of this disease. Sexual dysfunction, also commonly associated with this diagnosis, was not a prominent feature in the responding population. Most men were potent and remained sexually active although the frequency of sexual encounters was somewhat diminished after the onset of symptoms.

The obvious shortcoming of this survey is that the population of respondents may not reflect the general population of men with prostatitis. The demographics of the respondent population reflects the population with access to a computer and an internet connection and not necessarily the general population of men with prostatitis or men in general. However, we reasoned that men searching for help with their symptoms on the internet would be enriched for those in whom their symptoms were not readily addressed by their established medical care providers. Since these are the men we have the greatest difficulty helping it seemed reasonable to catalog their symptoms in the hope of developing a questionnaire for use in the general population. Also, since only 5-10% of men with symptoms can be shown to have a bacterial infection 90-95% of men with symptoms have what have been called either chronic non-bacterial prostatitis or prostatodynia.

The advantage of an internet survey is the speed with which data can be accumulated from large numbers of individuals. As access to the internet increases this advantage will only increase. We received no survey that appeared to be facetious or intentionally misleading. Even for detailed and very private questions about sexual activity the responses were complete and thorough. Interestingly, the internet mechanism may well have facilitated rather than hindered these responses.

Other investigators have begun to develop validated questionnaires for prostatitis. Neal and Moon [9] described a supplement to the Boyarsky symptom score [10] which could resolve patients with prostatitis in a study of 25 patients. Their data demonstrated a similar preponderance of irritative voiding symptoms over obstructive symptoms in prostatitis patients. Similar data and a symptom instrument have been proposed and validated by Nickel et. al. [11] in a prospective study of transurethral microwave thermotherapy in twenty men with non-bacterial prostatitis.

To finally begin to understand the cause of this disease we first need to be able to define it objectively. We must be able to reliably and reproducibly distinguish the population of patients who have the disease from those who do not. We must have a way to do this so that the populations defined by such an instrument can be compared between different groups of investigators. To create such a definition of the symptoms for prostatitis our data would suggest that several prominent features be included. A questionnaire should search for younger men with a chronic, relapsing illness, pain in the pelvic region, irritative voiding symptoms and pain with ejaculation. Less frequently reported symptoms were obstructive voiding complaints and exacerbation of symptoms with a particular physical activity. A symptom score based on these questions may finally allow us to define the population and to design investigations to compare men with symptoms to asymptomatic men or men with BPH . Investigators can then search for etiologic clues to the disease in comparable populations and objectively evaluate empiric therapies.Bibliography



Bibliography

1. Krieger JN, Egan KJ: Comprehensive evaluation and treatment of 75 men referred to chronic prostatitis clinic. Urology 38:11-19, 1991.

2. Weidner W, Schiefer HG, Krauss H, Jantos C, Friedrich HJ, Altmannsberger M: Chronic prostatitis: A thorough search for etiologically involved microorganisms in 1,461 patients. Infection 19:S109-S190, 1991.

3. Doble A, Thomas BJ, Walker MM, Harris JR, Witherow RO, Taylor-Robinson D: The role of Chlamydia trachomatis in chronic abacterial prostatitis: a study using ultrasound guided biopsy. J Urol 141:332-333, 1989.

4. Berger RE, Krieger JN, Kessler D, Ireton RC, Close C, Holmes KK, Roberts PL: Case-control study of men with suspected chronic idiopathic prostatitis. J Urol 141:328-331, 1989.

5. Shortliffe LM, Sellers RG, Schachter J: The characterization of nonbacterial prostatitis: search for an etiology. J Urol 148:1461-1466, 1992.

6. Meares, E.M. Prostatitis and related disorders. In: Campbell's Urology, edited by Walsh, P.C., Retik, A.B., Stamey, T.A., and Vaughan, E.D.Philadelphia:W.B. Saunders Company, 1996,p. 807-822.

7. Drach GW, Meares EM, Fair WR, Stamey TA: Classification of benign diseases associated with prostatic pain: Prostatitis or prostatodynia? J Urol 120:2661978.

8. Meares EM, Stamey TA: Bacteriologic localization patterns in bacterial prostatitis and urethritis. Investigative Urology 5:492-518, 1968.

9. Neal D, Moon T: Use of terazosin in prostatodynia and validation of a symptom score questionaire. Urology 43:460-464, 1995.

10. Boyarsky S, Jones G, Paulson DF, Prout GR, Jr. A new look at bladder neck obstruction by the food and drug administration regulators: guide lines for investigation of benign prostatic hypertrophy. Trans Am Assoc Genitourin Surg 68:29-32:29-32, 1976.

11. Nickel, JC, Sorensen, R. Transurethral microwave thermotherapy for non-bacterial prostatitis: A randomized double blind sham controlled study employing new prostatitis specific assessment instruments. J Urol (in press).



Tables

Table 1: Demographic factors
Age N
21-3015
31-4051
41-5049
51-6037
61-707
70-802
age not stated2
Total 163
Race N %
Caucasian15494.5
African descent10.6
Hispanic31.8
Native American00.0
Asian42.5
None of the above10.6
Total 163 100
Internet Domain N %
U.S. commercial6040.0
U.S. educational4328.7
U.S. network128.0
Canada76.0
U.S. other53.3
U.S. government42.7
U.S. organization42.7
Australia32.0
Germany21.3
United Kingdom21.3
Belgium10.7
Switzerland10.7
Finland10.7
Malaysia10.7
New Zealand10.7
Sweden10.7
Taiwan10.7
Total 150 100

Table 2: Symptoms
Symptom Number of responses % of patients reporting symptom a Severity rank (mean) b
Pain (other than with urination) that is somewhere in the pelvic area (penis, groin, testicle, anus, scrotum or thereabouts)13079.81.8
Frequent need to urinate11671.22.6
Difficulty getting urine out such as weak stream, straining or it takes a long time to empty the urine out of your bladder9558.32.9
Fatigue (tiredness)6338.73.9
Pain in the lower back6238.03.6
Pain that occurs with urination is made worse by urination6137.43.2
Other symptoms not on this list5332.53.1
Myalgia (aches and pains in muscles)5231.94.3
Pain deep in the abdomen (belly)3420.93.4
Arthralgia (aches and pains in joints)3420.94.6
Pain in a location not in this list1911.75.8
No symptoms or not applicable10.6n/a

a Percentage of total number of respondents (N=163) who selected each symptom. Since patients could have more than one symptom, the sum is greater than 100.

b Respondents scored each reported symptom from 1=most severe to 10=least severe. Data are the mean severity score for all responses.

Table 3: Location of pain in 163 patients
Location
Number of responses a
% of patients b
% of responses c
Perineum (area between scrotum [testicles] and anus [bowel opening])8652.7613.89
Around anal area but deeper inside6439.2610.34
Tip of penis5734.979.21
Lower back5533.748.89
Base of penis4930.067.92
Left testicle4829.457.75
Scrotum4628.227.43
Right testicle4326.386.95
Higher up in middle of penis3923.936.30
Deep in abdomen3722.705.98
Left groin2917.794.68
Right groin2716.564.36
Anus1911.663.07
My pain location not on this list137.982.10
I don't have pain74.291.13
Total 619 n/a 100.00

a N = 163 patients, patients could choose more than one site for pain they experienced.

b % of 163 patients reporting each symptom.

c % of total responses (619).

Table 4. Other symptom characteristics
Number of years with symptoms
Mean6.5
STD7.3
Median3
Range<1 to 20
N159
Onset of symptoms N %
Sudden8854
Gradual7344.8
Neither or not applicable21.2
Symptoms are:
Present constantly1811
Always present but get worse at times8753.4
Intermittent--normal between episodes5332.5
None of the above53.1
Total 163 100
Symptoms related to an activity
Yes6036.8
No6036.8
Not sure4326.4
Total 163 100

Table 5: Potency and sexual activity.
Question Mean a N
Do you have difficulty achieving an erection?0.9159
Do your erections last long enough for penetration and ejaculation?4.2156
Before prostatitis did you suffer from premature ejaculation?0.7157
After prostatitis did you suffer from premature ejaculation?0.8157

a Responses were based on the AUA symptom scale as follows:

0: Not at all

1: Less than 1 time in 5

2: Less than half the time

3: About half the time

4: More than half the time

5: Almost always

Table 6: Effects on ejaculation
N(%)
Question Yes No
Does it take you longer to ejaculate since the onset of symptoms?
57 (36)
101 (64)
Have you noticed a change in semen color since the onset of symptoms?
48 (30)
113 (70)
Do you find it harder to reach orgasm since the onset of symptoms?
57 (37)
98 (63)
Do you have pain with ejaculation?
Pain before ejaculation
22 (13)
Pain after ejaculation
90 (53)
No pain with ejaculation
54 (32)
Not applicable
4 (2)
Since the onset of prostatitis there is:
no change in the feeling of ejaculation
65 (40)
a decrease in the feeling of ejaculation
64 (39)
an increase in the feeling of ejaculation
17 (10)
Not applicable
14 (9)

Table 7: Sexual activity before the onset of symptoms
Question N (%)
Were you a virgin before the onset of prostatitis?
Yes13 (8)
No147 (92)
Number of sexual partners in the period before symptoms:
012 (7)
1101 (62)
2-529 (18)
6-1010 (6)
> 108 (5)
Types of sexual activity before the onset of prostatitis: (N=157)
None1 (1) a
Masturbation by self125 (77)
Masturbation by others51 (31)
Vaginal intercourse with nulliparous female78 (48)
Vaginal intercourse with multiparous female76 (47)
Anal intercourse as inserter10 (6)
Anal intercourse as receiver4 (3)
Oral intercourse performed on you84 (52)

a There were 157 valid responders to this question. Data are the % of 157 respondents who reported this sexual activity. Since more than one response was allowed the sum of % exceeds 100.

Table 8: Impact on quality of life
How much work have you missed because of symptoms? N %
None8654
A few days a year5434
A few weeks a year127
A few months a year43
Permanent disability32
Total 159 100
Have you had psychological problems dealing with the disease? N %
None3622
Some minor depression10263
Some major depression1610
Thoughts of suicide85
Total 162 100

Figure legends

Figure 1: Cumulative survey responses returned by electronic or U.S. mail. The survey was repeatedly posted every 5 days over the 55 day interval during which responses were accepted.

Figure 2: Normalized AUA total score and irritative and obstructive components. The responses to the seven questions of the AUA symptom score for BPH were separated into obstructive (4 questions) and irritative (3 questions) components along with the total score and were normalized to the maximum possible score for each group of questions. The histograms of scores from all responses in 163 men with prostatitis for A) total AUA score, B) irritative component and C) obstructive component are shown. The mean (STD) scores were 37.8(20.9) total, 41.0 (21.9) irritative and 35.4 (25.5) obstructive, p = 0.03 for obstructive versus irritative scores, 2-tailed Student's t test.

Figure 3: Frequency of sexual activity before and after onset of prostatitis symptoms. N = 159.

Figure 1

Figure 2

Figure 3

 

.........................................................................................
We're sorry you are having to learn about prostatitis, but we're glad you came here, because we think we can help. Please be advised that the Prostatitis Foundation does
not warrant, support, sponsor, endorse, recommend or accept responsibility for any health care provider or any treatment or protocol performed by any heath care provider.

© The Prostatitis Foundation
.........................................................................................

 
Add To Site Contact Home