I'm just curious as to what kind of doctors many of you are seeing to manage your care.
While I see my GP/Internist for check ups, I primary see a Physical Medicine and Rehabilitation (PM&R) doctor who has a sub-specialty in pain management. I also see a urologist, but I defer to the PM&R doctor who has a primary interest in pelvic pain. I have also had a consult with a neurologist, gastroenterologist, acupuncturist and chiropractor. Has anyone ever been to an orthopedist? rhumatologist? Endocrinologist?
Just curious who you all have seen and who has been (or hasn't been) helpful and informed.
Thanks!
What kind of doctor(s) are you using to manage your care?
What kind of doctor(s) are you using to manage your care?
Age: 40 | Onset Age: 38 | Symptoms: Pain in buttocks & ischial tuberosity/lower psoas especially while sitting. Occasional urethra burning. Diagnosis: CPPS/Pudendal Neuralgia | Helped By: Tramadol/Ultracet, Low dose Valium, Q-Urol, Yoga, Stretching regimen, swimming, relaxation, distraction. | Worsened By: Extended sitting at work or in the car, stress. Current Meds: Low dose valium, tramadol, Q-Urol, Omega III Fish Oil
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critthinker
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Re: What kind of doctor(s) are you using to manage your care?
I have seen a colorectal surgeon, four urologists, two infectious disease doctors and one internist. I have found that keeping everyone on the same page has been really difficult, but to answer your question I think a Uro is the way to go. That's great that you have a PM&R who has an interest in pelvic pain. Where are you located? I'm looking for someone exactly like that.
Age: 27 | Onset Age: 26 | Symptoms: Pelvic pain (began w/ introduction into bladder/prostate of highly resistant strain of bacteria that was acquired via a Botox injection intended to treat levator ani syndrome) | Helped By: Paxil for anxiety, Trigger point release and trigger point injections, stretches, hot baths, Prosta-Q | Worsened By: Stress/anxiety, Sitting down for long periods,
Re: What kind of doctor(s) are you using to manage your care?
I'm in Northern New Jersey. I have seen 4 urologists until I found one who truly understood this (he's on Long Island, NY). The PM&R doc in in NJ. I have also seen 2 chiropractors, an acupuncturist, an osteopathic physician, a GI guy, and a neurologist prior. (All of whom were no help.)
Age: 40 | Onset Age: 38 | Symptoms: Pain in buttocks & ischial tuberosity/lower psoas especially while sitting. Occasional urethra burning. Diagnosis: CPPS/Pudendal Neuralgia | Helped By: Tramadol/Ultracet, Low dose Valium, Q-Urol, Yoga, Stretching regimen, swimming, relaxation, distraction. | Worsened By: Extended sitting at work or in the car, stress. Current Meds: Low dose valium, tramadol, Q-Urol, Omega III Fish Oil
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critthinker
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Re: What kind of doctor(s) are you using to manage your care?
Would you mind sharing the name of the PM&R doctor? I'm in NYC now, and thinking of moving back home to California because of all of this, but if I stay in NYC would love to visit your doctor. Also, is your LI doctor Dr. Moldwin? Not sure how much physical therapy you've done, but I'd highly recommend Beyond Basics in Times Square.
Age: 27 | Onset Age: 26 | Symptoms: Pelvic pain (began w/ introduction into bladder/prostate of highly resistant strain of bacteria that was acquired via a Botox injection intended to treat levator ani syndrome) | Helped By: Paxil for anxiety, Trigger point release and trigger point injections, stretches, hot baths, Prosta-Q | Worsened By: Stress/anxiety, Sitting down for long periods,
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robertpagen
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Re: What kind of doctor(s) are you using to manage your care?
Moldwin is a class act. An excellent doctor for this. That having been said, I believe it is obligatory for you to do your own research before choosing a PT.
Age: 43 | Onset Age: 17 | Symptoms: previously: constant urgency, premature ejaculation, burning at tip of penis, pelvic ache current: semi annual flares. | Helped By: PT, yoga, stretch, keeping warm(long johns) boxer briefs, regular sleep routine | Worsened By: cystoscopy, antibiotics (fluoroquinolones) alcohol, coffee, stress, masturbation, cold
Re: What kind of doctor(s) are you using to manage your care?
Dr. Moldwin is who I see on Long Island. My PM&R doctor is Dr. Angela Ryan in Englewood, NJ. I have seen several PT in the NY/NJ area, most recently Marylin Freedman.
Age: 40 | Onset Age: 38 | Symptoms: Pain in buttocks & ischial tuberosity/lower psoas especially while sitting. Occasional urethra burning. Diagnosis: CPPS/Pudendal Neuralgia | Helped By: Tramadol/Ultracet, Low dose Valium, Q-Urol, Yoga, Stretching regimen, swimming, relaxation, distraction. | Worsened By: Extended sitting at work or in the car, stress. Current Meds: Low dose valium, tramadol, Q-Urol, Omega III Fish Oil
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robertpagen
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costs?
What are the costs per session for Marrilyn now? Does she give a trigger point map?
Age: 43 | Onset Age: 17 | Symptoms: previously: constant urgency, premature ejaculation, burning at tip of penis, pelvic ache current: semi annual flares. | Helped By: PT, yoga, stretch, keeping warm(long johns) boxer briefs, regular sleep routine | Worsened By: cystoscopy, antibiotics (fluoroquinolones) alcohol, coffee, stress, masturbation, cold
Re: What kind of doctor(s) are you using to manage your care?
$650 for the first visit and $300 for subsequent. No insurance taken; pay up front.
No maps, but she does give you a wand.
No maps, but she does give you a wand.
Age: 40 | Onset Age: 38 | Symptoms: Pain in buttocks & ischial tuberosity/lower psoas especially while sitting. Occasional urethra burning. Diagnosis: CPPS/Pudendal Neuralgia | Helped By: Tramadol/Ultracet, Low dose Valium, Q-Urol, Yoga, Stretching regimen, swimming, relaxation, distraction. | Worsened By: Extended sitting at work or in the car, stress. Current Meds: Low dose valium, tramadol, Q-Urol, Omega III Fish Oil
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robertpagen
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Re: MF cost/ benefit
With all due respect to Marilyn, who I have met and am very fond of as a person, I just don't see it. How can care be quantified without a tangible pelvic map where a patient can see exactly where the trigger points are? How can another PT seamlessly pick up the care? and the costs are, to me, just phenomenal. When I see some strong evidence that a PT's individual patients have experienced solid sustained progress then the cost can be justified. To live a life with pelvic muscle pain requires some scepticism or a very deep wallet.
Age: 43 | Onset Age: 17 | Symptoms: previously: constant urgency, premature ejaculation, burning at tip of penis, pelvic ache current: semi annual flares. | Helped By: PT, yoga, stretch, keeping warm(long johns) boxer briefs, regular sleep routine | Worsened By: cystoscopy, antibiotics (fluoroquinolones) alcohol, coffee, stress, masturbation, cold
Re: What kind of doctor(s) are you using to manage your care?
I'm inclined to agree with Robert, in all honesty. The price for her care made my eyes bug out! Down here in South Florida, I have a highly qualified pelvic PT who charges $140 for the first session, $120 thereafter. $650 just for the initial session is a lot.
Having said that, I've heard quite a few good things about Marilyn Freedman. She could be banking on her skill and the word of mouth that's gotten around. After all, PTs do run a business in the end.
Having said that, I've heard quite a few good things about Marilyn Freedman. She could be banking on her skill and the word of mouth that's gotten around. After all, PTs do run a business in the end.
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.
Re: What kind of doctor(s) are you using to manage your care?
I've only seen her once so far. Her philosophy is to teach patients self care so they don't return. I'm still working it out with my insurance to see if I can get any reimbursement at all to soften the blow. I have seen 3 other qualified PT's in my area without sustained relief.
Age: 40 | Onset Age: 38 | Symptoms: Pain in buttocks & ischial tuberosity/lower psoas especially while sitting. Occasional urethra burning. Diagnosis: CPPS/Pudendal Neuralgia | Helped By: Tramadol/Ultracet, Low dose Valium, Q-Urol, Yoga, Stretching regimen, swimming, relaxation, distraction. | Worsened By: Extended sitting at work or in the car, stress. Current Meds: Low dose valium, tramadol, Q-Urol, Omega III Fish Oil
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robertpagen
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Re: PT care?
It would be helpful if you say who are the other PT's you have seen and, politely and matter of factly, say what was your experience with each one. Otherwise each patient is left to wade through the dearth of clear information.
I can tell you matter of factly that after 4 visits with Ms Freedman, which ended in 2006, there still was no instruction on self treatment. A very nice lady, charming even. But no real plan.
Winter in Beijing is real cold. Could someone please repost those good stretches? Thanks
Also, Jay, who is the PT in South Florida?
Be Well,
Robert
I can tell you matter of factly that after 4 visits with Ms Freedman, which ended in 2006, there still was no instruction on self treatment. A very nice lady, charming even. But no real plan.
Winter in Beijing is real cold. Could someone please repost those good stretches? Thanks
Also, Jay, who is the PT in South Florida?
Be Well,
Robert
Age: 43 | Onset Age: 17 | Symptoms: previously: constant urgency, premature ejaculation, burning at tip of penis, pelvic ache current: semi annual flares. | Helped By: PT, yoga, stretch, keeping warm(long johns) boxer briefs, regular sleep routine | Worsened By: cystoscopy, antibiotics (fluoroquinolones) alcohol, coffee, stress, masturbation, cold
Re: PT care?
Hi,robertpagen wrote:Also, Jay, who is the PT in South Florida?
I have a separate post about her at this link. Her name is Pamela Downey, and she owns Partnership in Therapy for Wellness. It's in Coral Gables, which is right next to Miami.
Excellent PT, very kind, mellow. She does keep maps and updates a new chart with each visit. What's more, since she teaches at the University, she has some connections within the local health system to physicians who understand the pelvic floor. It was through her that I received a referral to my excellent pain management doctor.
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.
Re: What kind of doctor(s) are you using to manage your care?
Robert- Did you see any PT in the Northern NJ/NYC area who you felt were worth their while?
Age: 40 | Onset Age: 38 | Symptoms: Pain in buttocks & ischial tuberosity/lower psoas especially while sitting. Occasional urethra burning. Diagnosis: CPPS/Pudendal Neuralgia | Helped By: Tramadol/Ultracet, Low dose Valium, Q-Urol, Yoga, Stretching regimen, swimming, relaxation, distraction. | Worsened By: Extended sitting at work or in the car, stress. Current Meds: Low dose valium, tramadol, Q-Urol, Omega III Fish Oil
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robertpagen
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- Location: Beijing, China
Re: What kind of doctor(s) are you using to manage your care?
The short answer is no. After first trying EMH phy therapy on third av in NYC in 2004, who were comically green on the service they were offering. the following year I tried Mar Freeman on LI.
The only PT who I have recieved direct, verifiable, and credible positive treatment feedback on direct from a patient is the pelvic pain rehab practice in San Francisco. www.pelvicpainrehab.com I think it was on Van Ness
I find that many on this site state an initial burst of enthusiasm for a PT and then do not state the medium term results, much less the long term results.
I find it amazing that after this period of time there is still such a dearth of reliable info on practicioners.
The only PT who I have recieved direct, verifiable, and credible positive treatment feedback on direct from a patient is the pelvic pain rehab practice in San Francisco. www.pelvicpainrehab.com I think it was on Van Ness
I find that many on this site state an initial burst of enthusiasm for a PT and then do not state the medium term results, much less the long term results.
I find it amazing that after this period of time there is still such a dearth of reliable info on practicioners.
Age: 43 | Onset Age: 17 | Symptoms: previously: constant urgency, premature ejaculation, burning at tip of penis, pelvic ache current: semi annual flares. | Helped By: PT, yoga, stretch, keeping warm(long johns) boxer briefs, regular sleep routine | Worsened By: cystoscopy, antibiotics (fluoroquinolones) alcohol, coffee, stress, masturbation, cold