Who do you think I should contact to get Botox intrapelvic Botox injections? My urologist will probably be baffled, thinking I would just call some major hospital PT centers in the area. I have read via the forum Botox type A seems to be promising, are they going to know what I'm talking about?
Anyone had success with getting this done, regardless of whether or not it worked or not?
Thanks for the help
where to get Botox
-
gmccormack
- Veteran

- Posts: 204
- Joined: Wed Jan 21, 2009 3:19 am
- Location: Boston, MA
where to get Botox
Age: | Onset Age: | Symptoms: | Helped By: | Worsened By: | Other comments:
-
Jay
- Retired Mod

- Posts: 745
- Joined: Wed Mar 05, 2008 4:28 pm
- Location: Florida
Re: where to get Botox
Hi,
One of our former moderators, Kevin, had Botox injections. Unfortunately, I don't know how they panned out for him. I've heard some good reports (including an online friend who benefited greatly), and some bad reports. The procedure is invasive, and the effects of Botox tend to persist for quite some time, so there are certainly associated risks. It's not a treatment I'd enter into lightly.
I believe the use of Botox, while more common for urinary dysfunction, is still considered experimental for CPPS. You may find it challenging to track down someone with the appropriate knowledge. You'd definitely be well-advised to seek a reference from a pelvic floor PT, as they are most likely to network with someone experienced in the procedure. There's no way that I'd let a newcomer perform the injections.
I'm unfamiliar with where you're located, but I know there's someone here in South Florida who does them.
One of our former moderators, Kevin, had Botox injections. Unfortunately, I don't know how they panned out for him. I've heard some good reports (including an online friend who benefited greatly), and some bad reports. The procedure is invasive, and the effects of Botox tend to persist for quite some time, so there are certainly associated risks. It's not a treatment I'd enter into lightly.
I believe the use of Botox, while more common for urinary dysfunction, is still considered experimental for CPPS. You may find it challenging to track down someone with the appropriate knowledge. You'd definitely be well-advised to seek a reference from a pelvic floor PT, as they are most likely to network with someone experienced in the procedure. There's no way that I'd let a newcomer perform the injections.
I'm unfamiliar with where you're located, but I know there's someone here in South Florida who does them.
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.
-
gmccormack
- Veteran

- Posts: 204
- Joined: Wed Jan 21, 2009 3:19 am
- Location: Boston, MA
Re: where to get Botox
I'm in Boston, fortunately there are great hospitals here and many of them teaching so they are somewhat up on new treatments. I made an appt to see a pain specialist, I was told by admin at the hospital that is who would prescribe the procedure.
I agree, I am not entering into it lightly, in fact I don't even know if the pain specialist is going to go along with it. I have read some studies of it done, and the side effects or I guess ill effects have been "minimal" or non existent. I agree though, I would only enter into this with someone who is specifically knowledgeable of the pelvic floor.
If you don't mind Jay could you explain some of the bad reports you have heard? temporary paralysis?
I agree, I am not entering into it lightly, in fact I don't even know if the pain specialist is going to go along with it. I have read some studies of it done, and the side effects or I guess ill effects have been "minimal" or non existent. I agree though, I would only enter into this with someone who is specifically knowledgeable of the pelvic floor.
If you don't mind Jay could you explain some of the bad reports you have heard? temporary paralysis?
Age: | Onset Age: | Symptoms: | Helped By: | Worsened By: | Other comments:
-
Jay
- Retired Mod

- Posts: 745
- Joined: Wed Mar 05, 2008 4:28 pm
- Location: Florida
Re: where to get Botox
Hi,
You're really not asking an expert here, so I hesitate to give any particular advice. :)
Paralysis of the wrong muscle is possible, yes. Considering your pelvic floor functions to keep you from being incontinent, the risk there is obvious. I've heard stories of people feeling worse after the injection, or without improvement.
This isn't considered a conservative treatment, so I would urge you to seek out the best PT you can get before going this route. It's not cheap, so you'd might as well put your cash on the safest path first.
You're really not asking an expert here, so I hesitate to give any particular advice. :)
Paralysis of the wrong muscle is possible, yes. Considering your pelvic floor functions to keep you from being incontinent, the risk there is obvious. I've heard stories of people feeling worse after the injection, or without improvement.
This isn't considered a conservative treatment, so I would urge you to seek out the best PT you can get before going this route. It's not cheap, so you'd might as well put your cash on the safest path first.
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.
-
gmccormack
- Veteran

- Posts: 204
- Joined: Wed Jan 21, 2009 3:19 am
- Location: Boston, MA
Re: where to get Botox
Thanks Jay, In terms of experiencing no improvement, I am okay with that. I am talking to someone on the 8th about it, I'll see what he says. Money is not an issue, I would give up every material possession I have for chronic prostatitis / chronic pelvic pain syndrome to go away as I'm sure the majority of the men here would as well.
By the way, I read your latest FAQ...very good.
By the way, I read your latest FAQ...very good.
Age: | Onset Age: | Symptoms: | Helped By: | Worsened By: | Other comments:
-
Jay
- Retired Mod

- Posts: 745
- Joined: Wed Mar 05, 2008 4:28 pm
- Location: Florida
Re: where to get Botox
I don't wish to be discouraging, but it should probably be made clear that Botox won't cause chronic prostatitis / chronic pelvic pain syndrome to go away. It may reduce or mask the pain, but it - like nerve blocks - is a temporary solution when it works. Botox eventually dissipates, and the issue may return at that point.
I know you've been to the Stanford clinic at some point in the past, but I don't know how long ago that was. Before you go forward with any procedures, I'd suggest examining your situation with Doctor Wise and seeing whether he thinks the protocol wasn't a fit for you.
This isn't something I'd risk having done, in all honestly, and I live around my bed most days. Remember that you returned on the 11th following a six month remission. That's a long time. Don't allow this setback to push you into doing anything drastic, as for us, setbacks simply happen now and then.
I know you've been to the Stanford clinic at some point in the past, but I don't know how long ago that was. Before you go forward with any procedures, I'd suggest examining your situation with Doctor Wise and seeing whether he thinks the protocol wasn't a fit for you.
This isn't something I'd risk having done, in all honestly, and I live around my bed most days. Remember that you returned on the 11th following a six month remission. That's a long time. Don't allow this setback to push you into doing anything drastic, as for us, setbacks simply happen now and then.
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.
-
gmccormack
- Veteran

- Posts: 204
- Joined: Wed Jan 21, 2009 3:19 am
- Location: Boston, MA
Re: where to get Botox
Thanks for the advice jay, I know it's not going to be a solution but the idea would be to mask the pain while I continue with my Stanford/Wise-Anderson Protocol, I wouldn't mind being in less pain for awhile. I feel like, breaking the pain cycle at least in my own particular case is very physically and even more so mentally encouraging. It's likely that Dr. Wise will not suggest Botox but nor would he suggest other things that have helped may men.
Have a happy new year, may the best of todays be the worst of our tomorrow's
Have a happy new year, may the best of todays be the worst of our tomorrow's
Age: | Onset Age: | Symptoms: | Helped By: | Worsened By: | Other comments:
-
rysocal
- Intermediate Member

- Posts: 60
- Joined: Sun Jul 22, 2007 7:41 pm
Re: where to get Botox
Don't get the Botox injections, I had two of them and they didn't do anything. Search my posts and you can read about it. Plus i have a large bill in collections now, screwing my credit.
Age:30 | Onset Age:27 Symptoms: Golfball sensation, cramping in the rectum, inflamed/tight levator ani, occasional frequent urination, mild constipation, occasional burning testicular pain, IBS. Helped By: Exercise, Stretching (Yoga) specifically a deep lunge or pidgeon, running, beer, alcohol, relaxing,deep breathing Worsened By: Sitting for long periods (even w/ doughnut cushion), Stress, tight pants, caffeine, coffee in particular Tests: Pelvic MRI, Colonoscopy, Anal Monometry, STD, Pudendal Nerve Block. Botox into obturator internis, levator ani, and piriformis. Meds Xanax, Phenibut (The phenibut works awesome, better than the Xanax in my opinion)
-
critthinker
- Senior Veteran

- Posts: 242
- Joined: Sat Dec 05, 2009 10:15 am
- Location: California
Re: where to get Botox
Rysocal,
Is it conventional to have antibiotics prescribed prior to your Botox procedure? I had a Botox procedure done for levator ani syndrome, got an iatrogenic infection from it, which led to my CPPS. Thinking about getting a cysto done soon and want to know if I should request antibiotics prior to it.
Is it conventional to have antibiotics prescribed prior to your Botox procedure? I had a Botox procedure done for levator ani syndrome, got an iatrogenic infection from it, which led to my CPPS. Thinking about getting a cysto done soon and want to know if I should request antibiotics prior to it.
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,
-
rysocal
- Intermediate Member

- Posts: 60
- Joined: Sun Jul 22, 2007 7:41 pm
Re: where to get Botox
Crit,
I never had antibiotics prescribed to me before the Botox injections. That's beyond my knowledge, you need to ask your doctor about that.
Ry
I never had antibiotics prescribed to me before the Botox injections. That's beyond my knowledge, you need to ask your doctor about that.
Ry
Age:30 | Onset Age:27 Symptoms: Golfball sensation, cramping in the rectum, inflamed/tight levator ani, occasional frequent urination, mild constipation, occasional burning testicular pain, IBS. Helped By: Exercise, Stretching (Yoga) specifically a deep lunge or pidgeon, running, beer, alcohol, relaxing,deep breathing Worsened By: Sitting for long periods (even w/ doughnut cushion), Stress, tight pants, caffeine, coffee in particular Tests: Pelvic MRI, Colonoscopy, Anal Monometry, STD, Pudendal Nerve Block. Botox into obturator internis, levator ani, and piriformis. Meds Xanax, Phenibut (The phenibut works awesome, better than the Xanax in my opinion)
-
kevin
- Retired Mod

- Posts: 458
- Joined: Tue Aug 03, 2004 2:23 am
- Location: USA
Re: where to get Botox
I had a Botox injection in the bladder, which is quite a different procedure from an injection in the pelvic floor, which is presumably what you're asking about.gmccormack wrote:Who do you think I should contact to get Botox intrapelvic Botox injections? My urologist will probably be baffled, thinking I would just call some major hospital PT centers in the area. I have read via the forum Botox type A seems to be promising, are they going to know what I'm talking about?
Anyone had success with getting this done, regardless of whether or not it worked or not?
Thanks for the help
To find doctors in a particular region who offer this treatment, go PubMed.gov and doing the following search:
(replace "new york" with "los angeles" or whatever city you're looking for.)botulinum pelvic "new york"[ad]
Jerome Weiss does pelvic floor Botox injections, but I don't have enough evidence to recommend him.
Started: Spring 2003; high urinary frequency and pain associated with bladder filling; urinary hesitancy; pubic/prostate/perineal discomfort; Helped by: trigger point therapy, Afrin nasal spray, Cymbalta, hydrocodone (small doses), distraction. Makes worse: sex.
Not medical advice. Consult your doctor.
Not medical advice. Consult your doctor.
