My current progress

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carld
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My current progress

Post by carld »

This is my current update to my condition.

I'm currently off 10mg of Elavil and after 7 days I feel I'm done. I have used it as well as I could and felt that it was becoming counter productive. Elavil was helping ease my general anxiety, but I would have hard dry stools that would irritate. Now that I have stopped usage, my irritation is reduced greatly :!: I do notice that my body is adjusting to not taking Elavil and I have had an increase in anxiety, but the great thing is I'm aware and prepared to work through it and succeed. I wonder if this is more related to wondering how am going to feel and a heightened awareness or expectation I'm dealing with here.

As of July I stopped the alpha blocker Uroxatral and have had no need to go back. DONE :!:

At this time I'm 95%-98% recovered and days that I may feel irritated are not anything to focus on when I compare my onset of Feb. 2006
This is my current protocol
  • Daily moment to moment relaxation. I can't tell you how critical this is. After many months, I feel more natural relaxed and dropping my pelvis then I do clenching like I use to.
  • Nightly and daily stretching and relaxation and deep breathing everyday
  • hot baths about 2 times a week or as needed
  • Daily any accredited quercetin product 2 times a day w/ meals
  • I have not done any internal work for many weeks and will do so as needed to keep things in check. As for now the stretching and moment to moment relaxation is releasing my pelvic muscles and aiding in healing.
  • I also started taking L-Theanine supplement. I think it's an amino acid that's found in green tea. My friends from England on this forum I'm sure won't have any problems enjoying their green tea :wink: Please look it up. It's relaxing properties help stimulate the alpha brain waves which is the alert relaxed state VS. beta waves which is alert and excited state, not good for anxiety prone men like my self or CP/CPPS. Wikipedia's information on this is excellent. It's also known to reduce anxiety which is perfect for me. There are no known reported side effects, even at high doses. So research please.
  • I still avoid food irritants like alcohol and coffee and spicy foods. I do enjoy a vodka tonic from time to time with no problems so I'm grateful for that.
  • I try not to react to things instead be pro-active and believe in laws of attraction. Think positive and believe I can control my CP/CPPS and it will happen, in fact it is happening.
  • I do neurofeedback to monitor my brainwaves 2 times a month with my therapist which has helped train me to be in the alpha state more then the beta state which I was before. So being relaxed more leads to relaxed muscles and less stress and worry and less CP/CPPS. I think any way :?:
Current symptoms are slight discomfort in my perineum and some frequency on off days and post void dripping. I give it a 1 to 2 and not something that stops me from living a great life.

I may not ever get to 100%. At this point what is 100% :?: Prior to my onset I was dealing with anxiety and panic attacks which was destroying my life long before the pain and discomfort of CP/CPPS. Yes some days I get lazy and maybe not stretch or forget, but I don't worry about it. I try to charge hard still in my life but and here is the key in a relaxed way.

95% -98% is still great success and I intend to continue to get well. Even when I have off days I plan to charge ahead knowing I control this condition and it does not control me.

Be well and I wish all of you a happy and healthy Holiday season.

Regards, Carl...... :smile: :!:
Last edited by carld on Tue Nov 13, 2007 2:38 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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webslave
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Post by webslave »

Excellent progress, Carl. And you've been a great poster here too, encouraging others. Thank you. :smile:
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carld
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Post by carld »

webslave wrote:Excellent progress, Carl. And you've been a great poster here too, encouraging others. Thank you. :smile:
Thanks Mark. That means a lot to me. You are a mentor and it's an honor to be part of this forum. I consider this forum an extension to my family.

Regards, Carl... :-D
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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rider fan
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Post by rider fan »

Way to go Carl! So just to be clear....Right now you find that the moment to moment relaxation is sufficient for you, and you don't do the 'intensive' paradoxical relaxation sesions?

RF
Age: 32 | Symptoms: Twingy pain/muscle spasms in groin area (gone), tingling sensation at tip of penis (has resolved as of now), urinary frequency (resolved as of now), thicker/decreased amount of semen (resolved as of now). Makes better: Stretching, Relaxing pelvic muscles, moment to moment relaxation, not sitting with legs crossed, Elavil, quercetin. Makes worse: Sitting, stress, more than one orgasm/day, constipation, manual labour
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carld
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Post by carld »

rider fan wrote:Way to go Carl! So just to be clear....Right now you find that the moment to moment relaxation is sufficient for you, and you don't do the 'intensive' paradoxical relaxation sesions?

RF
I prefer autogenic relaxation. It works better for me. I think someone here said Dr. Wise prefers paradoxical relaxation because it worked for Him if I can remember correctly.

Relaxation for me is sitting quietly in a hot bath with a candle and focus on that and quiet my mind and drift away. Or sit on my yoga mat in front of my fire place and space out on that. Deep breathing while doing that. That works for me. Still working on the autogenic relaxation, but I think it will be the one for me.

Hope that clears things up.

Regards, Carl...
Last edited by carld on Tue Nov 13, 2007 3:44 am, 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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kevin
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Post by kevin »

Great job Carl! And thanks for being available to help people on this forum. You've helped many men.
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.
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carld
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Post by carld »

kevin wrote:Great job Carl! And thanks for being available to help people on this forum. You've helped many men.
Kevin,

You have been a huge help for me with your vast knowledge. I just want to pay it forward as best I can. :smile:
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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calguy
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progress

Post by calguy »

Carl your a big inspiration to me and watch out, you're becoming a mentor. Good news to go to bed on. Take it easy
Age 32, onset 32 Onset Aug 07- frequency was main problem in the beginning-really bad. Now 1 to 2x per night when frequency flairs up. Sore and tight lower abdominal muscles. Occasional burning after bowel movement and full feeling. What helps: Healthy diet(this is huge for me) Started drinking super greens supplament and almost going totally vegetarian to get body more alkaline, starting Prosta-Q, quercetin/zinc tablet in morning helped frequency problem I believe. Massaging abs and doing stretches helps calm down frequency when it is acting up. Wine or vodka after long day. Flexeral and melatonin at night. Swimming and light weights. .5 of Elavil every other day helps with frequency and healing process. Trying to stay positive and not stressing over this!
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garyholc
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Post by garyholc »

Great news Carl, really happy for you. And agree with everyone else, you are always supportive to people, me included on this forum - and on a day like today when I am quite a bit of pain and feeling low, reading your post gives me some hope.
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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Post by Sleeper Service »

Nice one, Carl. I think the key is to get to a point where it just doesn't bother you anymore and I think you've achieved that.

Nice work!

P.S. St John's Wort is good for minor anxiety. I use it and feel calmer for it.
Age 56: Onset 2006 and bouts on and off since then. See posts for details.
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Richard.N
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Post by Richard.N »

Top skills Carl! I'll certainly be checking out L-Theanine.
Richard

Age: 39. | Onset Age: 30. Onset Date: January 2002. Symptoms (back then): Supra-pubic pain, back pain, urinary frequency, urgency and difficulty, weak stream, nocturia, (and variously) chronic fatigue, IBS. Current symptoms: more frequent than normal, but pretty much under control. Current amelioration: Xatral 10mg, Mirtazapine 30mg. | Worsened By: Stress, binge drinking, strained bowel movements, bloating, sitting on hard surfaces, jogging, and regularly - THE WINTER!

I'm not a medical expert. My comment is opinion. See your medical professional.
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Post by scoobysnacks »

thats awesome....thanks for reporting what works for you....and I'm glad you are able to come off the Rx.

Keep it up!

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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scotsman
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Post by scotsman »

Superb update and fantastic progress. Inspirational for us all :-D

What dosage of L-Theanine do you take?

Richard.
Not medical advice: Read my progress to date : Read about my W-A clinic visit

Age: 54 CPPS: 20 Yrs Recovery Status: 95% Symptoms: Pain around perineum Makes Worse: Tension, sitting Makes Better: Stretching, triggerpoint therapy, relaxation
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Post by brettboz »

Hi Carl, I havent posted or even read the forums for some months now and independantly from you (remember I started taking it not long after you and we have very similar symptoms) I had also decided to drop the Elavil.

The reason I dropped it was because I felt I could cope with this on my own and I dont really think it was doing much. Anyway I now have stopped everything and I am OK 60% of the time. But when I am bad I am no where near as bad as I used to be (I can live my life).

If I have a really really really bad flare I take paracetamol with codeina (spelling). This works wonders and takes away nearly all my problems and one tablet per flare is normally all it takes.

My current symptoms have changed a lot since my initial problem. It is now very well isolated and usually starts in the left buttock. The pain there then passes through perineum to the tip of the penis but its nothing like it was...

One thing I have that I can't explain is when I feel an onset and do a "number 2" I get some sperm "leakage" while pushing. If anyone has any ideas what can be causing this then please let me know.

Oh and finally my current treatment is physio. I dont do any internal work as it doesnt seem needed my problems are mostly external and little by little I am getting better. I also have a warm sack thing I heat in the micro and it is great everyone should have one. Place correctly it can reduce all pain and is especially good at night.

I also put some anti inflam cream usually a day or 2 after physio to reduce flareups.

Other than that hot baths and take life easy.
Age:33 | Onset Age: 30 | Symptoms: burning urethra after urinating, followed by rush to urinate again, frequency, pain under left testicle, perineum pain. | Helped By: NSAID's, Hot Bath | Worsened By: Stress, Sitting and unknown reasons (seems to come every 2 weeks).
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carld
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Post by carld »

scotsman wrote:Superb update and fantastic progress. Inspirational for us all :-D

What dosage of L-Theanine do you take?

Richard.
Hi Richard,

How is the new Baby? Keeping you up or is he sleeping through the night. Oh I miss those nights of no kids comming into the bed at night and taking up the whole bed. :smile:

L-theanine is 200mg and I take 1 to 3 a day in the morning afternoon and evening or as needed. Like today I'm waiting for my new order and have not taken any. I'm a big believer in this amino acid and I think it's going to be key to keep me alert and relaxed. Very important for our condition.

Cheers, Carl..
Last edited by carld on Tue Nov 13, 2007 7:04 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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