New member in bay area CA

Male pelvic pain, prostatitis, IC
ramana
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New member in bay area CA

Post by ramana »

Very relieved to find this site. I have been trying to find people with whom I can share tips / trials and tribulations while trying to treat this problem.
Here is my case:
I started having chronic incomplete evacuation problem since Jan 2005. From Sep 2006 - Nov 2006 I had an anal fissure after which the evacuation problem increased. Then started taking zelnorm which helped. Anal manometry showed a very shortened anal canal 1 cm and very tight pelvic muscles. Had another fissure in April 16 2007 (both fissures due to straining). That cured in 3 weeks. On May 16, I lifted a 8 lb weight and boom, felt a tear and have pelvic pain ever since.
Have done PT 3 times with some success (or maybe it is a passage of time).
Considering doing Dr Wise clinic as I am a big believer in catastrophic thinking :) (and thus these troubles) and have anxiety problems complicated by continuing stressful situations.

My questions to other members
  • Has anyone been on disability? I am considering taking it since sitting increases pain and perhaps not doing anything will aid in recovery.
  • after 1 year of not much physical exercises (except iron yoga which I left in April and 40 minute of walk) and losing 20 lbs of weight, I am considering researching on ways to keep the other parts of the body healthy (specifically upper body since lower is well painful). So what do you do for upper body exercise? Is it even recommended?
  • What kind of relaxation techniques (other than Dr Wise paradoxical relaxation) have you used? I am trying abdominal breathing and pelvic relaxation.
Age:36 | Onset Age: 31 (chronic incomplete evacuation since 29) | Symptoms: Anal fissure (3); Pain in the rectum. Left Testicular pain started in August 2007. Professional PT (5 sessions) in June 2007. Stanford/Wise-Anderson Protocol in July 2007. Back to professional PT from Dec 17 2007 onwards twice a week; Dry needling once a week since March 06 2008. | Helped By: Sleeping; lying down; Thermotex infrared heating pad | Worsened By: Any activity; Medications Lyrica 75 mg* 2, Elavil 10mg Supplements; Cod liver oil ; Natural calm started 02/15; Vitamin B12 started 02/16;Vitamin D 1000U 03//08;Glucosamine+hyaluronic acid+MSM 04/08 Bed ridden since August 2007; Working from bed since Dec 2007 ;Botox done 100 units 04/03/08;RAST for wheat/rye/oats/milk -ve. Dairy free since 04/20/08. Gluten free since 04/25/08;Tried without success so far: Baclofen, PEMF machines, pranic healing reiki ;
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sam5935
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Post by sam5935 »

Hey there!

I'm afraid I may not be much help as my symptoms are much different than yours and I don't have mine under control. However, I noticed nobody had replied to you and wanted to encourage you to hang on as someone will, I'm sure. Also, I'm in San Francisco. Where have you been getting your health care?

S-
Age:34 | Onset Age: 32 | Symptoms: Right testicular ,generalized discomfort in pelvis/lower abdomen, low back pain | Helped By: Not sureNot sure what else yet | Worsened By: Sitting , standing
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scoobysnacks
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Post by scoobysnacks »

Ramana,

Sorry your post didn't get any attention. Ill try to respond now, hopefully you will be checking back with us.

I attended Dr Wise's clinic, I'm about 7 mos in to my own treatment. Some symptoms have DEFINITELY improved, but I still can't do the things I would like to do (without causing pain). I was an avid bodybuilder and soccer player prior to this and both severely flare my symptoms.

That being said, I am tons better than I was prior to attending the clinic, and Dr Wise said it took him years to get better following the protocol.

As for disability, no havent taken it, and I dont even know if I could. I would feel like I have given up, but I can understand wanting to. Sitting makes things a worse and add the stress of being a lawyer and I could definitely take a year hiatus from work and I think it'd help. However, I recommend treating this while learning to cope with your environment, I dont know if not working is something that you could carry on for the rest of your life, I know at 29 I certainly can't.

As for upper body exercises I lift still with very light weights, though it appears even the lightest of weights may bother you (you said an 8lb was the straw that broke the back); so you may better off with swimming or cheater pushups (done from the knees). Honestly, we are all effected differently, so some men will say lifting doesnt bother them, or running doesn't bother them, for me it all does. So this will be trial and error, but swimming will condition the upper body with not too much pelvic strain.

As for relaxation I practice paradoxical relaxation, I say practice because I am still trying to master it, sometimes I get it right and boy does it feel good, other times my mind is simply too preoccupied and while I can't get thoughts out of my head to properly do it I muster through it, some has to better than none.

Set a schedule to do some sort of relaxation and try to follow it.

Good Luck,

Ss
Age:29 | Onset Age: 25.5 | Symptoms: Initially burning in prostate/perineum, burning in urethra, uncontrollable muscle contraction before urinating, dual ache in groin, left testicle pain, feeling of golf ball in rectum, soarness in rectum, and muscle spasms, now mainly very mild urinary tract inflammation, burning mildly after ejaculation, some days after physical activity involuntary mild muscle contraction before urinating | Helped By: .5 mg of Ativan, Aleve (naproxen), quercetin, alcohol in large quantities (vodka and soda), stretching, walking, internal massage the perineum area and levators. | Worsened By: sitting, weightraining, jogging, coffee, caffeine in general, alcohol bothered me at first, overdoing sex
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carld
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Post by carld »

Ramana, welcome

Sorry to have not seen this post until today.

I would hightly suggest not take any disability. The last thing you need is to give in to your own thoughts that are the root cause of your condition. I believe this condition starts with an injury, clenching muscles or sports etc...Stress is a huge factor here so you should continue to monitor your stress through yoga, breathing deeply through your nose. Hot baths and simple relaxation. I light a candle and focus on that so I don't think of a bunch of things like I tend to do. Seems that stretching will be key for you since you don't have LUTS symptoms like my self. Your anxiety is the root problem here, you may consider trying benzos very carefully to see if this helps your symptoms. I'm not a doctor, just a dude w/ CP.....
I am not a medical doctor. Please fill out your signature (click here) ☼ ☼ My Starter List for new members
I encourage anxiety prone UCPPS people to consider L-Theanine
Age, 44 onset age 37 Feb 2006 Freq. need to urinate. Sensation of having to urinate soon after going. Perineum discomfort/burning/tightness, pubic area discomfort @ times,poor urine stream, post urine dripping/spray. All symptoms have improved with my protocol. At the worst I give it a 1 to 2 on irritation and discomfort and frequency. Helps: Elavil 5mg for anxiety and mast cell protection, (will only take it as needed) self internal PT as needed, stretching, walking, stairmaster cardio workout and light weights, reducing stress, moment to moment relaxation, deep breathing relaxation and using a Theracane. Makes worse: sitting for long periods, stress, over focusing on it. Currently 95%-98% recovered. Stay positive, relaxed and control your anxiety.
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garyholc
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Post by garyholc »

Carl - just out of interest you say you are 90-95% better, how long did it take you to get to this stage and how is the urinary frequency now? I'm finding this the hardest "problem" to cope with...
Age: 33 | Onset Age: 32 Initial Symptoms: Frequent urination Current Symptoms: The odd feeling of frequency but not much else Helped By: Not thinking about it, hot bath, red wine, light exercise, Bowen technique seems to help, getting on with my life Worsened By: catastrophic thinking, worrying things will get worse, feeling depressed, reading websites too often! Work! Sitting in work all day isn't good!! Current Progress : Since 1st Sept 08, no pain!!! :)
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carld
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Post by carld »

garyholc wrote:Carl - just out of interest you say you are 90-95% better, how long did it take you to get to this stage and how is the urinary frequency now? I'm finding this the hardest "problem" to cope with...
No quick answere here so here I go....

My onset happened in Feb 2006 but in Nov. 2002 for 1 month before the birth of my first daughter I had the constant sensation of having to pee. I thought this was nerves from being a Dad soon or stress. Turns out It was, that's the irony here. It went away as fast as it came on. I ignored it until it came back in Feb. 2006. Wish I knew then what I know now, that this was my warning sign to make changes in my mental attitude.

My recovery started at about 10 months into it, I started feeling the recovery take place. This happened after I started the Elavil 10mg and switched from any accredited quercetin product to Quercetin.(Cheeper) more research history behind it and pain is not my issue. However, a burning or fire in my perineum is pain so this was my torture for months.

:rant: My frequency is better for sure but it is still an issue. I average about every 2 hours durring my work days and it can be less or more. Depends on how stressed I am or relaxed. Bottom line for me is if I feel emptied and relief, then I can care less if in a half hour later I pee again or 3 hours later. So long as I feel no discomfort in my pubic area and perineum. Aleve (naproxen) is a big help as well, so I know that I have inflammation through my tight dysfunctional muscles. So my recovery in terms of suffering this time last year, which was total hell is 95% better. That's why you have to gage your recovery by weeks and months, not by days. My frequency is 90% better but I still feel like I have a long way to go and need to stick to my protocol for life. I have accepeted this new approach to life. I still charge hard in life but in a healthy way. More like cruise control instead of 5th gear take no prisoners, keep your friends close but your enemies closer kind of life. Not that I have any enemies that I'm aware of, but you know what I mean... :smile:
Last edited by carld on Fri Jul 13, 2007 7:28 pm, edited 1 time in total.
I am not a medical doctor. Please fill out your signature (click here) ☼ ☼ My Starter List for new members
I encourage anxiety prone UCPPS people to consider L-Theanine
Age, 44 onset age 37 Feb 2006 Freq. need to urinate. Sensation of having to urinate soon after going. Perineum discomfort/burning/tightness, pubic area discomfort @ times,poor urine stream, post urine dripping/spray. All symptoms have improved with my protocol. At the worst I give it a 1 to 2 on irritation and discomfort and frequency. Helps: Elavil 5mg for anxiety and mast cell protection, (will only take it as needed) self internal PT as needed, stretching, walking, stairmaster cardio workout and light weights, reducing stress, moment to moment relaxation, deep breathing relaxation and using a Theracane. Makes worse: sitting for long periods, stress, over focusing on it. Currently 95%-98% recovered. Stay positive, relaxed and control your anxiety.
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Sleeper Service
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Post by Sleeper Service »

Carl raises an interesting point. Back when I was 18 I had a two week experience where I couldn't crap and found it difficult to pee. It was murder and in the end was cured with antibiotics. It's possible that was my muscles locking up.
Age 56: Onset 2006 and bouts on and off since then. See posts for details.
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carld
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Post by carld »

Sleeper Service wrote:Carl raises an interesting point. Back when I was 18 I had a two week experience where I couldn't crap and found it difficult to pee. It was murder and in the end was cured with antibiotics. It's possible that was my muscles locking up.
For sure!! The antibiotics could of been the placebo effect, you took a pill, relaxed because of your expectation to get better and you got better. There is is just so much people don't know about the brain and stress and muscles and how it's all connected to how we feel. What a trip....
I am not a medical doctor. Please fill out your signature (click here) ☼ ☼ My Starter List for new members
I encourage anxiety prone UCPPS people to consider L-Theanine
Age, 44 onset age 37 Feb 2006 Freq. need to urinate. Sensation of having to urinate soon after going. Perineum discomfort/burning/tightness, pubic area discomfort @ times,poor urine stream, post urine dripping/spray. All symptoms have improved with my protocol. At the worst I give it a 1 to 2 on irritation and discomfort and frequency. Helps: Elavil 5mg for anxiety and mast cell protection, (will only take it as needed) self internal PT as needed, stretching, walking, stairmaster cardio workout and light weights, reducing stress, moment to moment relaxation, deep breathing relaxation and using a Theracane. Makes worse: sitting for long periods, stress, over focusing on it. Currently 95%-98% recovered. Stay positive, relaxed and control your anxiety.
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