3 Years since My Onset

Male pelvic pain, prostatitis, IC
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carld
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3 Years since My Onset

Post by carld »

Hi everyone...

Well it's been 3 years now since my onset...Actually when I think about it, I had my first bout in November of 2002, a month before the birth of my fist child...I had to urinate frequently and thought it was stress...( Turns out, I was right :wink: ) It went away after a month and I didn't really think much of it. That was my sign of things to come I guess.

Anyway, I guess I'm feeling reflective now because like many of you, I went to hell and back. This post is basically a way to tell those of you who are new here and some of my friends here who know me, to simply say this....

There is a wonderful life that can be lived having CP/CPPS...I'm not here to tell you I'm cured...You will never hear me say that. There is no cure. My condition has been managed very well. With that being said...anyone reading this post can take heart that the moment you decide to except that your genes, mind and body are different. That your stress and diet effect your body differently. That recovery can really only start with acceptance first. Many men have their stress kill them in different ways. In my belief, CP/CPPS is your warning to change your life habits before you are hit with a deadly disease...


I'm here as proof...I have little or no discomfort now. There are days that I have some discomfort, but it is no big deal to me now. Time and hard work are the reason's for this steady recovery. I remember the day I accepted this w/ out fear and said no more am I going to play "why me". I simply went to work and worked through the ups and downs that are part of CP/CPPS. I will continue to improve my quality of life simply because there is no other option for me. I refuse to lay down when I have a family that depends on me to be there for them and wonderful things I want to do in this life that doesn't slow down for CP/CPPS. So live life and not endure life...

Try to say to yourselves...I will not let myself suffer anymore than I already have. Time served if you will...Than practice deeply the many options we have here for mental and physical wellness that will come with time and hardwork.

Best, Carl...
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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JoVoChicago
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Re: 3 Years since My Onset

Post by JoVoChicago »

Congrats Carl,
From reading your posts it seems that more than anything else you have gotten the whole chillout/relax/inner-calm thing down.
I think that is 90% of controlling this problem (post treatment).
We can go to PT's and get treatments - learn to do them on ourselves, do stretches, change our diets, and all of the rest of the tangible physical behavior based things we need to do fairly easily - as it seems most of the people here are very goal oriented - driven people - never afraid of a challenge.
But - the long term "cure" is really stress management - and that's so much harder to do because it's not just behavior based - but interpretive and subjective, psychologically based personal mind control.
Since nobody can truly control the stressors that enter their lives - it's all about how we react to them.
I find I can get my pain down to nearly zero when I (for example) light a candle, put on some soft music in a dark room, lie on the floor with my pillows positioned "just right" and do my Breathwork in a highly concentrated way - the trick for me is learning how to take that with me in real life in the real world and away from that controlled environment.
To have that tool in your kit when the Dr. says "your EKG looks a little funny", or you're caring for your Mother in the early stages of Alzheimers, or when your Son has been in a car accident at 4:AM, or you're simply having an extra difficult day and a long to do list of things that needed to be done yesterday... that's the tool to develop.
I'm trying - hard - but my progress is so slow sometimes I doubt my progress at all.
But - I do know that is as close to "the answer" as there is.
So maybe that's the most important first step.
Take care - great luck with your continued recovery.
Joseph
Age:46 | Onset Age:42 (first occurence Age 17). | Symptoms: A belt of pain that wraps around my waist radiating down my groin & into testicles. Also: Radiating from hips down thighs, Urinary urgency even after voiding, lightning bolts of pain that shoot through my rectum, penis & perineum, muscle spasms in my bottocks, fear of sexual arousal or erection. | Helped By: Hot Water Therapy, RSA Breathing, Pacing more than sitting, Avoiding Negative People, Painting & Writing, Painkillers. | Worsened By: Wearing Pants, Anger, Panic, Depression, Stress, Vigorous Sex, Prolonged Sitting, Constipation, Abrupt Movements, Lifting/Carrying anything more than a Gallon of Milk, Forgetting to do the above things I'm helped by. *Ejaculation is a Mixed bag: It definitely relieves pressure & pain in my Abdomen (as well as a good emotional release) - But, causes bigtime burning in my penis & perineum for 10-45 minutes after.
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rellis
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Re: 3 Years since My Onset

Post by rellis »

Glad your doing well Carl. Thank you for hanging around and passing along on the positive help and hope to us new folk.

As far as exercise goes I'm still experimenting:

racquetball- doesn't flare me up
golf- doesn't flare me up
motocross- flared up perineum burn/inflammation but no freq/urgency.
gym- treadmill is fine , bike seat irritates perineum and light weights so far so good.

Seems like I need to avoid anything with a seat .

I get about a week before I need to see the PT again for internal work or the golf ball burning sensation returns
Age: 43 | Onset Age:43 Feb 2008 95% better since seeing PT | Symptoms: tightness in hips and thighs, perineum pain, groan tightness burning golfball sensation , urinate frequency every 10 minutes | Helped By: eliminating coffee and diet cokes ,meditation, hot jacuzzi, PT visits weekly w/ trigger point internal therapy, extra padding for chair ? | Worsened By: ? sitting in chair at work , stress, anxiety
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calguy
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Re: 3 Years since My Onset

Post by calguy »

I know garyholc had to give up his Motorbike riding it caused him problems. Glad to hear you being so positive about this, it will help in your recovery. I was a wreck for months. :crying: May have to give up few things for a while but sure one day you will be able to pick them up again. Will be running down to see chrissy myself in a couple weeks.
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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HelpADude
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Re: 3 Years since My Onset

Post by HelpADude »

Hey carld, remember me? I haven't been on here for a while now, where's Lightingtree these days? I hope he is doing well.

My onset was April of 2006, wow, almost three years too and I'm doing good right now. I post my chronic prostatitis / chronic pelvic pain syndrome history today but I can't find my post anymore... something I meant to do for 2+ years.
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Jay
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Re: 3 Years since My Onset

Post by Jay »

Hi,

Just to answer your question, HelpADude ... I spoke with LightningTree via email a couple of months ago, and he was doing great at that time. :smile:
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.
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