Hi All,
Wondering if anyone has a recommendation for a pain management specialist in the Los Angeles/Orange County area who has experience with CPPS. Thanks!
Pain Management Doctor in L.A./OC?
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critthinker
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Pain Management Doctor in L.A./OC?
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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critthinker
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Re: Pain Management Doctor in L.A./OC?
Wanted to bump this thread to see if anyone had recommendations. I am VERY unhappy with my current pain management specialist, who knows next to nothing about CPPS.
If no one has a recommendation, I'd still appreciate a strategy to go about finding a pain management doctor who has experience with the condition. I've checked on pain management society directories, but none seem to specify chronic prostatitis / chronic pelvic pain syndrome (or other specific pain disorders) as ones these doctors treat.
If no one has a recommendation, I'd still appreciate a strategy to go about finding a pain management doctor who has experience with the condition. I've checked on pain management society directories, but none seem to specify chronic prostatitis / chronic pelvic pain syndrome (or other specific pain disorders) as ones these doctors treat.
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: Pain Management Doctor in L.A./OC?
Hi,
I can't recommend anyone, as I live in Florida.
I'd suggest that you call around to physical therapists who treat chronic pelvic pain, especially ones who are members of something like a university-based health system. Very frequently, these PTs do network with several different kinds of physicians, and they may be able to offer a name. My PT referred me to my PM doctor on this basis.
I can't recommend anyone, as I live in Florida.
I'd suggest that you call around to physical therapists who treat chronic pelvic pain, especially ones who are members of something like a university-based health system. Very frequently, these PTs do network with several different kinds of physicians, and they may be able to offer a name. My PT referred me to my PM doctor on this basis.
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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critthinker
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Re: Pain Management Doctor in L.A./OC?
Jay, what a great idea. Thanks for the help. Will keep you posted!
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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critthinker
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Re: Pain Management Doctor in L.A./OC?
For those who are interested, I wanted to post an update. I emailed the author of a book chapter on chronic prostatitis / chronic pelvic pain syndrome pain management and also spoke to a pelvic pain PT in SoCal, and together they recommended the following pain management physicians:
Dr. Josh Prager (UCLA)
Dr. James Teng (Los Angeles-area)
Dr. Sheldon Jordan (Santa Monica)
Dr. Mark Wallace (UCSD)
Dr. Josh Prager (UCLA)
Dr. James Teng (Los Angeles-area)
Dr. Sheldon Jordan (Santa Monica)
Dr. Mark Wallace (UCSD)
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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observer98
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Re: Pain Management Doctor in L.A./OC?
Critthinker, did you try any of those and did you have any luck? Protocol that helped?
Re: Pain Management Doctor in L.A./OC?
I personally don't like Prager.... I do like Graf Radford at Cedars but he is a myofascial pain guy. Maybe he can recommend an actual pain management person. He's very smart.
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critthinker
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Re: Pain Management Doctor in L.A./OC?
Tried Dr. Jordan, was NOT impressed. Charged a ton of money and only made things worse.observer98 wrote:Critthinker, did you try any of those and did you have any luck? Protocol that helped?
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,
Questions for Critthinker
On the off chance that you'll see this post anytime, I just wanted to see how things are going. I read your "success story" and all but the end sounds very familiar to me. It sounds like you have indeed beaten this, and I wish you continued good health.
I was just curious about something that I'm not clear about. I understand about giving up the fight in order to heal with this stuff. As you know, it's hard to do with the constant pain interrupting your life. What I'm curious to know is, for you, do you feel back to normal? Is all the pain and dread cleared now for you, even while you work and travel? I completely related to your story about feeling like you were never going to hold a full time job again, or meet someone and settle down. It's the same for me. My mind currently cannot grasp being employed, and I feel like I'm going to be in this room, alone, for the rest of my life, laying here in pain. ( I do get out for walks, or for short visits with friends, but mostly I'm still debilitated.)
I could use a little hope right now. I'm not expecting to find a magic bullet cure, or to suddenly wake up one day and be 100%, though it's a nice dream. But it's really hard to see much progress over the 8.5 months I've had this. I'm definitely better than I was in December through March, but I seem to be stuck in this duration of most often discomfort where it's difficult to do much, and nearly impossible to enjoy anything because of the pain, which completely messes with the psyche too.
I am not myself these days, and I miss being well, and doing the things I used to do. Like you I was very healthy, exercised regularly, ate healthy, spent time with friends, and had great plans including going back to school. It hit me in November, and since then I've been mostly merely existing. I try to do things I love, but the pain makes it no fun. If I try to concentrate on very detailed and tedious tasks, I get a sick feeling. I'm at the point where I'm just trying to find healthy ways to get even temorary relief from the pain, but there isn't much. I'll sometimes ramp up feeling better over a week or two to one or one and a half pretty good days, only to be smacked back down again for no apparent reason the next day for another long haul.
So I just wanted to know... Is there actually a "feeling good again" with this stuff, for real? Does the pain really fade to a point where it either stays almost gone, or all the way gone so a person can feel like themselves again, and carry on with life the way it's meant to be lived, instead of merely existing? I do not choose to be hypervigilant. My problem is that my pain is incredibly distracting, hard as I try to ignore it, it' seems to be tied into my soul somehow.
I'm trying to do things the right way. Sorry for posting this on an old post, but you don't seem to be around much these days (which is good for you!) and there arent too many active members these days... Which is weird.
Best wishes!
I was just curious about something that I'm not clear about. I understand about giving up the fight in order to heal with this stuff. As you know, it's hard to do with the constant pain interrupting your life. What I'm curious to know is, for you, do you feel back to normal? Is all the pain and dread cleared now for you, even while you work and travel? I completely related to your story about feeling like you were never going to hold a full time job again, or meet someone and settle down. It's the same for me. My mind currently cannot grasp being employed, and I feel like I'm going to be in this room, alone, for the rest of my life, laying here in pain. ( I do get out for walks, or for short visits with friends, but mostly I'm still debilitated.)
I could use a little hope right now. I'm not expecting to find a magic bullet cure, or to suddenly wake up one day and be 100%, though it's a nice dream. But it's really hard to see much progress over the 8.5 months I've had this. I'm definitely better than I was in December through March, but I seem to be stuck in this duration of most often discomfort where it's difficult to do much, and nearly impossible to enjoy anything because of the pain, which completely messes with the psyche too.
I am not myself these days, and I miss being well, and doing the things I used to do. Like you I was very healthy, exercised regularly, ate healthy, spent time with friends, and had great plans including going back to school. It hit me in November, and since then I've been mostly merely existing. I try to do things I love, but the pain makes it no fun. If I try to concentrate on very detailed and tedious tasks, I get a sick feeling. I'm at the point where I'm just trying to find healthy ways to get even temorary relief from the pain, but there isn't much. I'll sometimes ramp up feeling better over a week or two to one or one and a half pretty good days, only to be smacked back down again for no apparent reason the next day for another long haul.
So I just wanted to know... Is there actually a "feeling good again" with this stuff, for real? Does the pain really fade to a point where it either stays almost gone, or all the way gone so a person can feel like themselves again, and carry on with life the way it's meant to be lived, instead of merely existing? I do not choose to be hypervigilant. My problem is that my pain is incredibly distracting, hard as I try to ignore it, it' seems to be tied into my soul somehow.
I'm trying to do things the right way. Sorry for posting this on an old post, but you don't seem to be around much these days (which is good for you!) and there arent too many active members these days... Which is weird.
Best wishes!
Age: 49| Onset Age: 47| Symptoms: Pain locations: Intermittent left and right front pelvic floor lateral to urethra; occasionally left side tailbone pain (rarer); left spermatic chord pain (become rare); Post BM-Pain helped by distraction during Bowel Movement.| Current meds: None. Helped by: deep breathing, mediation, hiking, distractions, exercise. Approximately 98% improved, varying depending on stress levels.
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webslave
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Re: Pain Management Doctor in L.A./OC?
They're cured, or well enough not to need this forum at the very least. Does that not tell you something positive right there?there arent too many active members these days... Which is weird.
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Re: Pain Management Doctor in L.A./OC?
Yes it does, and that's a great reason! Better than many all trying to find answers at the same time, which I imagine it was like for a while.
No news is good news!
No news is good news!
Age: 49| Onset Age: 47| Symptoms: Pain locations: Intermittent left and right front pelvic floor lateral to urethra; occasionally left side tailbone pain (rarer); left spermatic chord pain (become rare); Post BM-Pain helped by distraction during Bowel Movement.| Current meds: None. Helped by: deep breathing, mediation, hiking, distractions, exercise. Approximately 98% improved, varying depending on stress levels.