Lump in Perineum

[James]

In recent months I have noticed a lump in the area of the perinium on the left side (which is the side of all of the pain as well).

 

It can not be seen externally - but when pressure applied to perinium it can be felt - it is about the size of a grape - and painful if pressed.

 

I am not looking for medical evaluation - I know tht is not the purpose of this site - I am asking my Doc about it - and so far no luck.

 

Just fishing for possibiliities....as it seems related to symptoms.

 

[Arnon Krongrad, MD]

There isn't really a reason to be skeptical or not. The question is what do the data show?

Dr. Anderson presented some data at a meeting I recently attended. They are not published as a paper yet, as far as I know. Among them:

1) The treatment was a trigger-point release "boot camp," as he called it. As I recall, treatment lasted a few days, but I don't remember how many treatments per day.

2) Trigger points from time to time or across therapists.

3) Success was defined as a 6-point or greater drop in CPSI score.

4) Success was achieved in 70 out of 116 patients (60%).

5) One patient reported worsening symptoms with treatment.

Among my questions:

1) Do patients also define success as a 6-point drop in CPSI? Is this sufficient relief?

2) How durable is the drop in CPSI?

3) Is a 6-point drop within the background "noise" of daily symptom variation? Is this drop a placebo effect?

4) What were the baseline scores of the patients? How severely symptomatic were they to start with?

5) What do we do with the 40% who showed no response at all?

[G8 GT]

James, I see a pelvic-floor PT once a week in Baltimore, MD (about 50 miles one-way from my home in South PA.) She starts with external work, and then finishes with internal work. It takes a little "getting-used-to" for the internal work, and I did see some improvement for about 24-36 hours. Even with the improvement, the prostatitis symptoms are quite aggravating, and I am wondering, will I be driving 100 miles out of the way, round-trip, once a week to handle this issue?

[Arnon Krongrad, MD]

Mike, you are beginning to hint at an answer to my first question: How do patients define success?

[James]

Mike - Thanks.
Doc - I agree - I may have unrealistic expectations - but my defintion of success is the removal of the symptoms of prostattiis from my daily life.

In my case that means pain in perinium and prostate areas, pressure/congestion feeling, "golf ball" in anus feeling, urinary symtoms, and overal pelvic area malaise....

Obviously - the removal of some but not all of the above is also welcomed with open arms...

Should I define success with a lowered expectation - perhaps - but I would rather aim high and settle low.....

[G8 GT]

James, I like the "aim high, and settle low (if need-be)" theory. I have a variety of symptoms, but none of them are more troubling than the frequent urination. Why? Because it has me up every 2 hours at night, therefore my quality of sleep is terrible. It is starting to take a toll on my mind and body, causing me to be excessively tired and more anxious, and even depressed, than normal. I would give almost anything to rid of that ONE symptom. The rest? I would welcome their elimination, like you said, with open arms.

[Arnon Krongrad, MD]

Let's not conflate the issues:

1) Any man is entitled to define success as he wants. Since definitions very, we want to take care to communicate our definitions. So we can compare "apples" to "apples."

2) What is a realistic expectation of success? Well, that depends upon the definition of success and the treatments pursued. The purpose of the clinical trial we're running, just as one example, is to test just how realistic is the expectation of achieving success by which definition one wants to apply: 6-point drop on the CPSI, complete elimination of CPSI score down to zero, and so on.

[Arnon Krongrad, MD]

James says "my defintion of success is the removal of the symptoms of prostatitis." Should one infer this means complete removal? What is complete removal if captured by CPSI? Would the score have to be literally zero, as has happened in some, but not all, of the LRP patients? Or is a score of a few points mere clinically meaningless "background noise," the presence of which still allows a definition of success? In other words, how do we correlate subjective self-report of status and CPSI scores?

Consider ... Today I got a 6-month CPSI from a patient: His score is 4 (down from 40 pre-op). If the inference from the definition above is correct -- "success" requires that CPSI score be zero -- then a score of 4 represents a 6-month result that is unsuccessful. Yet the patient is delighted with his status, equating a incomplete removal (score of 4) with delight.

As we read the literature and examine patient reports, let's clarify what is being measured and be careful about often arbitrary assignations of numerical measures of success and failure. And let's distinguish:

1) Patient subjective self-report ("delight")
2) CPSI point change with treatment
3) CPSI final score with treatment

[James]

I can not quantify what point reduction would qualify as "success". I doubt anyman could.
It is like the definition of pornography -" I know it when I see it."

Success is by nature a reduction of symptoms to an acceptable level for the patient.
And - yes - every patient will have a slightly different measure of that - but I doubt anyone of those patients would say a "x" point reduction in some arbitray score sheet equals success.

Success equates to symptomatic relief to a point where it is meaningful.
Since this is not cancer - it can not be measured under a microscope.

Would I call my case a success if I reduced by obscenly high CPSI score to a number under 6 - yes - I likely would - assumuming the score sheet actually captured the resulting symptomatic improvment accordingly.

[Arnon Krongrad, MD]

Excellent. What you've so well captured is that the patient's definition of success is subjective, personal, and very possibly not correlated with either the CPSI change, the CPSI end result, or with the doctor's definition.

Technical note 1: The "boot camp" doctor's definition of success was not a drop to CPS=6. It was a drop of 6. By that definition, a CPSI change from 37 to 31 is successful treatment.

Technical note 2: Given that human vocabulary is so rich, we do need some relatively simpler and more standard measure that can help us compare treatment effects. For now, the CPSI seems to be the only real choice, even as it's imperfectly correlated with the subjective reports (as in these threads and in the videos) and even as it obviously incompletely captures prostatitis symptoms (it does not capture back pain, fatigue, palor, and others).

[James]

My bad on the misread - I drop of 6 points for me is the equivlant relief given by a few aleve...whereas a drop to 6 would be dramatic.

So - thanks for pointing that out.

To reduce by only 6 points someone in extreme CP pain is almost meaningless in the long term of healing ....sadly....

[Nik]

My pain can fluctuate by + or - 10 in a week easily. A drop of 6 sounds like a joke to me, like another get rich quick scheme to milk prostatitis patients.

[James]

I don't know about a "scheme" - but certainly a claim of a reduction of 6 pts is less meaningful then we desire, deserve, or would try to achive.

Only someone who never suffered this disease would think a 6 point reduction is meaningful.