I want to take a poll to determine the accuracy of one of the common conceptions of CPPS.
After your initial onset or after 6 months of having symptoms has your pain/symptoms:
a) increased
b) decreased
c) stayed the same
A study like this was done before by Dr. O'leary, an old one. I think this board is an indicative source since we have had and still have many severe sufferers.
Assuming I use a 95% confidence level, I need at 50 responders to make it meaningful. I know it's a lot
I tried to get it to be a click survey but couldn't figure out how
I edited your post so that it now utilizes the poll function.
I am not a physician. This is not medical advice. Consult your doctor!
Age: 26 Onset Age: 17 Symptoms: Shooting, nerve-like pains throughout the penis, which abruptly hit and leave. Testicular pain, perineum pain, burning/irritative urination, extended pain after ejaculation. Occasionally, some allodynia or ache in the coccyx/sacrum/thigh/buttocks/legs. Diagnosis: Pelvic floor dysfunction, degenerated lumbar disk, and mildly herniated lumbar disk. Helped By: Physical therapy, pain management doctor, hot baths, therapy pool, stretching regimen, breathing exercises, relaxation, distraction. Worsened By: Arousal/ejaculation (worst), constipation, panicking/obsessing, other triggers depend upon current symptoms. Tests/Prior Treatments: Too many antibiotics to count, multiple urine tests (all normal), testicular ultrasound (normal), bladder and renal ultrasound (normal), lumbar and pelvic MRI with and w/o contrast (revealed disk problems), Elavil 25mg (caused retention), Flomax 0.4mg.
Since the definition of UCPPS requires at least 3 months of symptoms, and since most men here have had it for years, this survey probably won't yield much data. Looking back nearly 20 years, my own first 6 months are a blur of pain.
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That's because what Jay put up is not what I was looking for. I do appreciate it, way easier. Maybe you could edit it though?
I want to know after the initial onset or AFTER 6 months, have the symptoms increased, decreased, or stayed the same. Not what it was like between month 3 and 6, I agree that would be a foolish.
I phrased it this way because maybe someone's onset was 2 months.
Basically, has this gotten better with time or worse? Dr. Wise told me that his symptoms were getting progressively worse in year 20 of having, I don't think this is common but maybe it is. Maybe some have no change.
Thanks again Jay, big help. Hopefully no one voted yet.
I edited the poll question. There had been a few votes, but not many. Your question is difficult to phrase, because there's no way of knowing whether the people answering are saying they're worse at some point after onset, or worse after six months.
May I ask what you are looking to find in the results? It essentially seems commonplace that those who do nothing may experience a worsening of symptoms, particularly if they expose themselves to sources of irritation.
I am not a physician. This is not medical advice. Consult your doctor!
Age: 26 Onset Age: 17 Symptoms: Shooting, nerve-like pains throughout the penis, which abruptly hit and leave. Testicular pain, perineum pain, burning/irritative urination, extended pain after ejaculation. Occasionally, some allodynia or ache in the coccyx/sacrum/thigh/buttocks/legs. Diagnosis: Pelvic floor dysfunction, degenerated lumbar disk, and mildly herniated lumbar disk. Helped By: Physical therapy, pain management doctor, hot baths, therapy pool, stretching regimen, breathing exercises, relaxation, distraction. Worsened By: Arousal/ejaculation (worst), constipation, panicking/obsessing, other triggers depend upon current symptoms. Tests/Prior Treatments: Too many antibiotics to count, multiple urine tests (all normal), testicular ultrasound (normal), bladder and renal ultrasound (normal), lumbar and pelvic MRI with and w/o contrast (revealed disk problems), Elavil 25mg (caused retention), Flomax 0.4mg.
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Thanks web and jay. I'm not sure if that's the case that it gets worse over time, evey uro good or bad told me to get on with my life and it would get better in time. I think for the most part they are right but maybe not, and like you said some people get worse.
I would obviously say that both you and webslave would check "decreased" with web being asymptomatic and you seem to be better since I remember reading your posts last year.
There is no doubt that if you physically do something about you symptoms they are likely to get better however, there are many here who say the W-A protocol doesn't work for them, I would like to think that they would respond to the poll. Maybe it does get "slightly" better each year as Dr. O'Leary (Harvard) concluded in one of his old studies. I don't know I am trying to figure out.
my original bout decreased to 100 % symptom free after 2 years first 9 months was hell. Second bout years later the same again ,and now in my current bout and has decreased a lot again but not 100% yet I'm now in my 3rd year of this bout and am at about 85 % better
Age:33 | Onset Age:19 | Symptoms:burning urethra, deep sore stinging around the perineum, dribbling | Helped By:when flare starts deep relaxing over a toilet to let out dribbling urine, hot bath, rubbing a heat cream on the perineum, Tens with a pad on the perineum, running, medication (solpadol) for pain. Current treatment: PT. | Worsened By:sitting, stressing over it, ejaculation, sometimes alcohol but I risk it. Been feeling a lot better last 6 months about 85% with a few flares lasting about 5 days. No longer having PT. Stretching every other night and I believe time is also a big factor for me
