Hey everyone,
I rarely post here and typically only come on to the site when I'm working through some flare up (like right now). Anyway, I thought I'd give you all a suggestion that's working for me. Go out there and live your life like you would if you didn't have pain. I don't mean drink tons of alcohol or get super stressed at work (these things probably led to this). Instead, have a great social life, do the outdoor activities you love....travel...etc. Do all of that and if you have pain just think how much better it is to be doing something cool while in pain than sitting alone at home in pain. We only have one life so there is no point in laying on the couch in self pity if we can still walk around!
That's my philosophy and the thing I've noticed is that the more I do to distract myself from pain the better my pain gets.
So today I have a little flare....I'm going out. :)
Hope that hits home for some of you! I know some of you are way worse off than me, but let's try to do the best we can.
Good luck,
Chris
Suggestion
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chrisphl
- Beginner
- Posts: 20
- Joined: Tue May 22, 2007 12:02 am
Suggestion
Age:30 | Onset Age: 29 | Symptoms: Started with burning in the urethra. Thought it was an infection. Symptoms have spread and now shoot around. | Symptoms: Golf ball pain, burning around anus, scrotum pain, testicle pain. Pain eliminated by vacation but soon comes back as stress continues. | Helped By: Not sitting down too much, reducing stress (trying to), hot baths and relaxing. Pain was originally somewhere between 5 and 8 but is now calming down to about 3-5.
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graeme
- Old Hand
- Posts: 452
- Joined: Fri Jun 17, 2005 3:42 pm
- Location: Birmingham uk
Re: Suggestion
Much easier to do now your pain is down to 3 not so easy i guess when it was 8 still been positive is a good thing 
Age:33 | Onset Age:19 | Symptoms:burning urethra, deep sore stinging around the perineum, dribbling | Helped By:when flare starts deep relaxing over a toilet to let out dribbling urine, hot bath, rubbing a heat cream on the perineum, Tens with a pad on the perineum, running, medication (solpadol) for pain. Current treatment: PT. | Worsened By:sitting, stressing over it, ejaculation, sometimes alcohol but I risk it. Been feeling a lot better last 6 months about 85% with a few flares lasting about 5 days. No longer having PT. Stretching every other night and I believe time is also a big factor for me
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Sleeper Service
- Sage
- Posts: 617
- Joined: Tue May 02, 2006 3:49 pm
- Location: Edinburgh, Scotland
Re: Suggestion
I always feel better when on holiday or doing something physical.
Always.
Always.
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Jay
- Retired Mod
- Posts: 745
- Joined: Wed Mar 05, 2008 4:28 pm
- Location: Florida
Re: Suggestion
I think moderation is key. For a lot of people, the only way to get better is to not ignore the problem. They need to incorporate therapy, life changes, etc. However, I do agree that you must continue to live your life as normally as is possible. That normalcy is important, as it provides a sense of stability during very difficult and jarring times. I continue to be a gamer, to enjoy animation, music, etc. Basically, I work on my condition, but I also do my best to not obsess like I used to.
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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BrettP
- Old Hand
- Posts: 323
- Joined: Thu Mar 20, 2008 5:30 am
Re: Suggestion
Its true I went on a big road trip, figured all the sitting and driving would flare me up, but quite the opposite, felt great, no issues, then back to work, and symptoms come back... go figure.
Good to go!
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carld
- Retired Mod
- Posts: 1554
- Joined: Mon Aug 21, 2006 11:49 pm
- Location: Newbury Park
Re: Suggestion
My exact feeling and attitude as well...Good postchrisphl wrote:Hey everyone,
I rarely post here and typically only come on to the site when I'm working through some flare up (like right now). Anyway, I thought I'd give you all a suggestion that's working for me. Go out there and live your life like you would if you didn't have pain.
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.
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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popburner
- Intermediate Member
- Posts: 80
- Joined: Thu Sep 13, 2007 4:38 am
Re: Suggestion
ditto Carl
Age:29 | Onset Age:29 | Symptoms: ORIGINALLY - rectal pain, penis tip pain, perineal spasms, golf ball feeling in perineum, painful ejacualation ONGOING - rectal pain, penis tip hypersensitivity, urethral pain at beginning of urination, ejaculatory pain, burning skin around legs and buttox | Helped By: warm baths, NO catastrophic thinking, Physical Therapy; Stanford/Wise-Anderson Protocol; Mirtazipine (Remeron) for anxiety and sleep, dry needling of TPs (NOT injections), PAIN PSYCHOLOGIST (CBT and Commitment and Acceptance Therapy), diet changes - so far eggs are out doing an elimination diet now :) | Worsened By: ANXIETY, FEAR, STRESS, CATASTROPHIC THINKING,heavy weight lifting , sitting too long