I've figured out that when I actually hold my penis shaft tight with my hand while urinating, the muscle spasm/feeling in my rectum/prostate area feels much better when urinating. I also noticed after ejaculating, that holding the urethra tight again with my hand seems to help as well. Can anyone she some light on this and why it helps? Does this even correlate with CPPS? I have had symptoms pain 24/7 for over four years now and have been through the same typical uro routes as all of you. Unfortunately, I have a lot of bladder pain and frequency as well which started after I first had the pain in the prostate sensation. The muscle spasm occurs in my rectum every time I urinate. Whats interesting is I had a "cyst" removed from my sphincter muscle about 6 months ago hoping this would alleviate the pain. It did not and it turned out the cyst was actually a gross cell reaction and appeared to have chronic inflammation in the muscle tissue.
Also most importantly, if anyone could suggest the best uro for me to see in New York City, I would be greatly appreciative. I saw Dr. Kaufman but he recommended the KCL test which I quickly decided not to do for fear of the pain I would have afterwards. If he feels I have IC, why not treat it? I think I am ready to go and try the physical therapy approach, but I need a doctor who will support it so I can try and submit to my insurance. Also would like to know I can rule out anything serious with a uro I trust and who I know is good.
Help is highly appreciated!!!!
Pain question and NYC docs
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cppsyoungsufferer
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Pain question and NYC docs
Age: 26 | Onset Age: 23 | Symptoms: | Helped By: | Worsened By:
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webslave
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Re: Pain question and NYC docs
Dr Moldwin (Long Island Jewish hosp).
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cppsyoungsufferer
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Re: Pain question and NYC docs
Thanks for the quick reply. Any chance there is someone directly in the city? Unfortunately getting out to Long Island is quite the trip for me.
Age: 26 | Onset Age: 23 | Symptoms: | Helped By: | Worsened By:
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webslave
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Re: Pain question and NYC docs
The other well known one is Kaufman, and you've seen him already.
In your shoes I'd go straight to Marilyn Freedman.
In your shoes I'd go straight to Marilyn Freedman.
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Hafegeo
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Re: Pain question and NYC docs
I saw Dr. Kaufman, and he is the one who prescribed PT for me.
Age: 35 | Onset Age: 31 | Symptoms: Occasional bouts of frequency, sensation of bladder not completely emptying, tightness in groin and pelvis (ever since cystoscopy w/hydrodistention); urgency seems to have subsided | Helped By: PT, relaxation, Theracane | Worsened By: Stress, carbonated beverages
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cppsyoungsufferer
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Re: Pain question and NYC docs
Thanks for the replies guys. Did Kaufman have you do the KCL sensitivity test? Any thoughts on that?
Age: 26 | Onset Age: 23 | Symptoms: | Helped By: | Worsened By:
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Jay
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Re: Pain question and NYC docs
I haven't seen Dr. Kaufman, but I can give some info on the KCL Sensitivity Test. It involves passing a potassium solution into the bladder via a catheter and seeing if it causes additional pain or urgency. A normal bladder wouldn't be sensitive to potassium, so positive results from the test are used as a pointer toward IC. Use of potassium instillations for this purpose is pretty established now.cppsyoungsufferer wrote:Thanks for the replies guys. Did Kaufman have you do the KCL sensitivity test? Any thoughts on that?
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.
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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Hafegeo
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Re: Pain question and NYC docs
Dr. Kaufman did not give me the KCL test, nor did it ever come up in the conversation. I had been diagnosed with IC earlier in the year by another uro; Dr. Kaufman read the report and commented, "Well, OK, he made a textbook diagnosis." He said that HiTP "describes your situation exactly," and that was that. I think he was suspicious (as I have been) since I never had bladder pain, just frequency and occasional urgency. Interestingly, he took me off Elavil, since pain was not part of my symptomology.cppsyoungsufferer wrote:Did Kaufman have you do the KCL sensitivity test?
Age: 35 | Onset Age: 31 | Symptoms: Occasional bouts of frequency, sensation of bladder not completely emptying, tightness in groin and pelvis (ever since cystoscopy w/hydrodistention); urgency seems to have subsided | Helped By: PT, relaxation, Theracane | Worsened By: Stress, carbonated beverages
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mbaker
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Re: Pain question and NYC docs
I second Webslave's advice - go see Marilyn. She's excellent and very experienced with this condition in men. I saw her myself last year.
mb
mb
Age: 45; Onset: Jan 2007; Initial | Symptoms: perineal, pubic, penile, right testicle pain, pain while sitting; Current | Symptoms: 95% better; very seldom do I have pain now; caffeine was the culprit; Helps: No caffeine (even decaf), Red tea, Getting exercise, Pure Encapsulations Nutrient 950 multi-vitamin; Hurts: Caffeine, sometimes when my l5s1 back issue acts up.