I think it's been a year since I last posted. Funny to think just 7 years ago I was on here 24 hours a day. Those days still make me shudder.
Anyway, I'm doing ok. Still at 80-90%. Rarely have bad flare ups now. Still use donut cushion religiously. I truly believe it helps the most of anything. I have 3.
I still have a discomfort down there and some urinary issues, but I can live with them.
Life returned to normal eventually. Well, almost. Funny what becomes "normal" after a wretched Hellish experience like 2-3 years of brutal CPPS.
Special shout out to Mark and Shoskes...is Dimitrikov still around? Word up to all you old schoolers. Ciao for now.
checking in
checking in
Age: 41. Onset: 28. Symptoms: perineum burn and urinary. Musts: donut cushion and stay unconstipated.
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Dave (rhemium) never did the Stanford/Wise-Anderson Protocol or any other specific thing, as fas as I can remember, besides Quercetin. Is that right, Dave?
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Rhemium, so nice to hear from you. I am also one of the "old schoolers". Back in the google site days when the Miami protocol(sit in a hot bucket of water for 30 minutes) was all we had. I am also about 80% and can live with it. I am also full strength, playing golf twice a week and really don't have any restrictions. Back in 2001 I wish I had known what we know today. It would have been so much more bearable. I eventually did the SP and still do the stretches and relaxation I learned from the PT. Glad you are doing well.
Age: | Onset Age: | Symptoms: | Helped By: | Worsened By: | Other comments:
Update
No, I never did the Stanford/Wise-Anderson Protocol. It was sort of a new theory about the time mine burned out.
I used any accredited quercetin product for awhile back in the day, but it was during a time when my chronic prostatitis / chronic pelvic pain syndrome was so bad and so inflamed NOTHING was going to help. I did the broccoli broth for quite awhile too. All the quercetin surely didn't hurt.
But I think sitting on the donut cushion and avoiding constipation are my primary ways of minimizing symptoms.
The rigorous massages helped a lot too.
It was a dark time for me and I always felt a little guilty for abandoning the group. But I'll check in from time to time.
I used any accredited quercetin product for awhile back in the day, but it was during a time when my chronic prostatitis / chronic pelvic pain syndrome was so bad and so inflamed NOTHING was going to help. I did the broccoli broth for quite awhile too. All the quercetin surely didn't hurt.
But I think sitting on the donut cushion and avoiding constipation are my primary ways of minimizing symptoms.
The rigorous massages helped a lot too.
It was a dark time for me and I always felt a little guilty for abandoning the group. But I'll check in from time to time.
Age: 41. Onset: 28. Symptoms: perineum burn and urinary. Musts: donut cushion and stay unconstipated.
Well good to read this post. I am on this board for several hours a day. Given my bed ridden position this is all I can do for hope. Good to know though that the condition does heal.
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 ;
6 weeks with little pain for me. Best period in 2 and a half years of this. I'm seeing like a lot of men this thing calm down in time if you do the right things 
Age: 29 | Onset Age: 26 | Symptoms: initially severe burning throughout pelvis - much better; muscles spasms all over region, back pain, chronic IBS (much better) | Helped By: Psychotherapy, SP stretches, swimming, accepting the condition (understanding there is treatment); stress/anxiety management; possibly basic quercetin; valerian root, vit B & calc & magn supplements; gluten avoidance & especially dealing with chronic constipation. | Worsened By: stress / anxiety, too much sex; repressed emotions; personality goodist traits. 80% better
This doesn't go completely away by itself, unfortunately.
when I first got this in 1993 mine burnt out 3 years later without treatment to the point where I was 100% pain free !
It returned in 2000 and I'm now at 60 % better
It returned in 2000 and I'm now at 60 % better
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
checking in
Ok veterans I'm just starting out, and hoping it doesnt get worse. Would SP help with frequency and pain in urethra? I am taking saw palmetto, quercetin and pretty strict diet, any more suggestions? I am going to order any accredited quercetin product too. Really encouraging to know I could get better. Hope you guys stick around and pass on the wisdom. thanks
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!
Re: checking in
Internal tight muscles are at the root of my frequency. So getting your pelvic floor worked on by a PT familiar with this is key. Then learning to do it yourself.calguy wrote:Ok veterans I'm just starting out, and hoping it doesnt get worse. Would SP help with frequency and pain in urethra? I am taking saw palmetto, quercetin and pretty strict diet, any more suggestions? I am going to order any accredited quercetin product too. Really encouraging to know I could get better. Hope you guys stick around and pass on the wisdom. thanks
Go back and read the what is pelvic myoneuropathy? under webslaves signature.
You just have to let go and understand this does not go away by itself because you are causing this. Not some micro-organism or bacteria that's made a home in your prostate.
Consider 10mg of Elavil to help with this as well. Ask your doctor.
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.
Try Prelief also to ensure your urine acidity is balanced (7.0). You can get urine pH test strips to check this in the morning when you pee for the first time.
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Age: 45; Onset: Jan 2007; Initial | Symptoms: perineal, pubic, penile, right testicle pain, pain while sitting; Current | Symptoms: 95% better; very seldom do I have pain now; caffeine was the culprit; Helps: No caffeine (even decaf), Red tea, Getting exercise, Pure Encapsulations Nutrient 950 multi-vitamin; Hurts: Caffeine, sometimes when my l5s1 back issue acts up.
Elavil
I would caution that Elavil can cause contipation as a side effect. Even at a small dose it was problematic for me.
Nothing irritates me more than constipation and/or sitting w/o a donut cushion.
If I avoid the above I barely ever notice my problem.
Nothing irritates me more than constipation and/or sitting w/o a donut cushion.
If I avoid the above I barely ever notice my problem.
Age: 41. Onset: 28. Symptoms: perineum burn and urinary. Musts: donut cushion and stay unconstipated.
Re: Elavil
Totally agree with you. I spent a day sitting on a hard chair at work this week and it gave me problems. Who would think that a one off, 8 hour event could give that little extra push back into the discomfort zone?Rhemium wrote:I would caution that Elavil can cause contipation as a side effect. Even at a small dose it was problematic for me.
Nothing irritates me more than constipation and/or sitting w/o a donut cushion.
If I avoid the above I barely ever notice my problem.
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.
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.
Re: Elavil
Rhemium did you suffer with frequency problems and feeling you needed the loo more often than you did?
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!!! :)