My story of the road to CPPS - MajorSky

Male pelvic pain, prostatitis, IC
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MajorSky1
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???

Post by MajorSky1 »

Caedar wrote: Most important to know is that both processes involve the CNS and that the current thinking is that, with patience and time and work, they can be reversed partially or completely. There isn't a lot of definitive science behind it yet, but it's getting there.
For the "work" part, is meditation and/or mindfulness as good as paradoxical relaxation? Trying to figure out if there's anything else I should be doing that maybe I don't know about.

I spoke too soon yesterday, because today I've got a lot of pain. For whatever reason, a different part of the actual tailbone really hurt this morning - mostly just to the touch. Doesn't feel like the meds are doing much at all, but then I guess it's a little early yet.

Probably the most annoying, and scary thing is the painful spasming during and just after ejaculation, and then often the increased pain in the ischio area the next day or three. I waited a week lately and it still spasmed. Definitely a concern for any future relationship. But it has to be part of, or a byproduct of CPPS, correct?

Ever since that injection 3 weeks ago, pain has been increased, and more widespread. Was a stupid thing to do I guess.
Age: 49| Onset Age: 47| Symptoms: Pain locations: Intermittent left and right front pelvic floor lateral to urethra; occasionally left side tailbone pain (rarer); left spermatic chord pain (become rare); Post BM-Pain helped by distraction during Bowel Movement.| Current meds: None. Helped by: deep breathing, mediation, hiking, distractions, exercise. Approximately 98% improved, varying depending on stress levels.
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Re: My story of the road to CPPS - MajorSky

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The tailbone pain I had yesterday has changed today by feeling like it's at, and just below the surface of the skin. It's as if something causing pain started down by one of the sections of the coccyx, and made its way to the surface. Not sure what would act in that way.
Age: 49| Onset Age: 47| Symptoms: Pain locations: Intermittent left and right front pelvic floor lateral to urethra; occasionally left side tailbone pain (rarer); left spermatic chord pain (become rare); Post BM-Pain helped by distraction during Bowel Movement.| Current meds: None. Helped by: deep breathing, mediation, hiking, distractions, exercise. Approximately 98% improved, varying depending on stress levels.
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Re: My story of the road to CPPS - MajorSky

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Well, some good news at least - turns out the tailbone pain that I thought was something new right on a vertebrate of the coccyx, was actually the early stage of a small pilodinal cyst, or even just an ingrown hair. :facepalm: Didn't realize it until this afternoon when it started to hurt and itch toward the surface of the skin, and feel more swollen in the skin itself. Still doesn't look like much - barely noticeable on the skin surface. Probably caused from taking a couple of baths a few days ago, and reclining in the tub on a towel in the hot water, or from sitting differently on the inflatable ring while driving. I NEVER got these before. Good grief. At least it will heal in a few days. :smile:
Age: 49| Onset Age: 47| Symptoms: Pain locations: Intermittent left and right front pelvic floor lateral to urethra; occasionally left side tailbone pain (rarer); left spermatic chord pain (become rare); Post BM-Pain helped by distraction during Bowel Movement.| Current meds: None. Helped by: deep breathing, mediation, hiking, distractions, exercise. Approximately 98% improved, varying depending on stress levels.
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Re: My story of the road to CPPS - MajorSky

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My doctor just recommended caudal epidural nerve block. It sounds like your experience has been bad. Did you get any relief at all?
Age: 36 | Onset Age: 20 | Symptoms: frequency, perineum pain, pain going from the perineum going up the penis through the uretha and Ibs constipation. Chronic pelvic pain everyday and anxiety| Helped By: heat pads, excersise, but really haven't found anything | Worsened By: ejaculation, stress, constipation, travel
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Re: My story of the road to CPPS - MajorSky

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3 weeks today. Nothing yet.
However, my pain has been worse, actually.
Last edited by MajorSky1 on Tue Sep 01, 2015 12:01 pm, edited 1 time in total.
Age: 49| Onset Age: 47| Symptoms: Pain locations: Intermittent left and right front pelvic floor lateral to urethra; occasionally left side tailbone pain (rarer); left spermatic chord pain (become rare); Post BM-Pain helped by distraction during Bowel Movement.| Current meds: None. Helped by: deep breathing, mediation, hiking, distractions, exercise. Approximately 98% improved, varying depending on stress levels.
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Re: My story of the road to CPPS - MajorSky

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MajorSky1 wrote:Well, some good news at least - turns out the tailbone pain that I thought was something new right on a vertebrate of the coccyx, was actually the early stage of a small pilodinal cyst
Did you get it looked at by a doc? A pilonidal cyst can turn nasty if you don't get it fixed early; I've had one before.
Age: 26 | Onset Age: 23 | Symptoms: Neuropathic-like pain and hyperalgesia (lateral/anterior thighs mostly, but distributed throughout body); Pain (penis shaft, right side, when erect for long or excess masturbation) | Previous Symptoms: Pain (testicles; penis underside, mostly near base and running up urethra, sharp/burning; perennial region, dull; ejaculatory; post-ejaculatory); Urinary (moderate incomplete voiding; moderate frequency and pain on bladder filling); Sensations (cold in head of penis) | Helped By: Stretching (especially hip rotators and flexors); Yoga (especially lunges, warrior 2, and pigeon) Trigger point release (abdominals; iliopsoas; gluteus muscles and piriformis; bulbospongiosus & ischiocavernosus; thigh adductors); Meditation (mindfulness); Walking & Aerobic Exercise | Worsened By: Stress, anxiety, too much alcohol, lack of sleep, sitting at length | Current prescriptions: nortriptyline (10 mg, 1x at night; for CNS sensitization and IBS) Previous prescriptions: hydroxyzine (10 mg, 1x at night; for urinary symptoms/mast cell stabilization; useful), clonazepam (0.25-0.5 mg, 1x at night; for anxiety/CNS sensitization; useful for short time)
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Re: My story of the road to CPPS - MajorSky

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How was yours treated? And how bad was yours?
Age: 49| Onset Age: 47| Symptoms: Pain locations: Intermittent left and right front pelvic floor lateral to urethra; occasionally left side tailbone pain (rarer); left spermatic chord pain (become rare); Post BM-Pain helped by distraction during Bowel Movement.| Current meds: None. Helped by: deep breathing, mediation, hiking, distractions, exercise. Approximately 98% improved, varying depending on stress levels.
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Interesting article

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http://www.painresearchforum.org/news/1 ... emory-pain

But does central sensitization eventually reverse itself?
Age: 49| Onset Age: 47| Symptoms: Pain locations: Intermittent left and right front pelvic floor lateral to urethra; occasionally left side tailbone pain (rarer); left spermatic chord pain (become rare); Post BM-Pain helped by distraction during Bowel Movement.| Current meds: None. Helped by: deep breathing, mediation, hiking, distractions, exercise. Approximately 98% improved, varying depending on stress levels.
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Re: My story of the road to CPPS - MajorSky

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MajorSky1 wrote:How was yours treated? And how bad was yours?
First tried to lance it. Didn't work, so it had to be excised. Took a few months to heal. I'd recommend getting it checked out.
Age: 26 | Onset Age: 23 | Symptoms: Neuropathic-like pain and hyperalgesia (lateral/anterior thighs mostly, but distributed throughout body); Pain (penis shaft, right side, when erect for long or excess masturbation) | Previous Symptoms: Pain (testicles; penis underside, mostly near base and running up urethra, sharp/burning; perennial region, dull; ejaculatory; post-ejaculatory); Urinary (moderate incomplete voiding; moderate frequency and pain on bladder filling); Sensations (cold in head of penis) | Helped By: Stretching (especially hip rotators and flexors); Yoga (especially lunges, warrior 2, and pigeon) Trigger point release (abdominals; iliopsoas; gluteus muscles and piriformis; bulbospongiosus & ischiocavernosus; thigh adductors); Meditation (mindfulness); Walking & Aerobic Exercise | Worsened By: Stress, anxiety, too much alcohol, lack of sleep, sitting at length | Current prescriptions: nortriptyline (10 mg, 1x at night; for CNS sensitization and IBS) Previous prescriptions: hydroxyzine (10 mg, 1x at night; for urinary symptoms/mast cell stabilization; useful), clonazepam (0.25-0.5 mg, 1x at night; for anxiety/CNS sensitization; useful for short time)
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Re: My story of the road to CPPS - MajorSky

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I got it checked out today. He said it was mostly superficial, prescribed some antibiotic ointment, and that was it. Definitely sore.
Age: 49| Onset Age: 47| Symptoms: Pain locations: Intermittent left and right front pelvic floor lateral to urethra; occasionally left side tailbone pain (rarer); left spermatic chord pain (become rare); Post BM-Pain helped by distraction during Bowel Movement.| Current meds: None. Helped by: deep breathing, mediation, hiking, distractions, exercise. Approximately 98% improved, varying depending on stress levels.
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Re: My story of the road to CPPS - MajorSky

Post by Caedar »

That's good. You got it early!
Age: 26 | Onset Age: 23 | Symptoms: Neuropathic-like pain and hyperalgesia (lateral/anterior thighs mostly, but distributed throughout body); Pain (penis shaft, right side, when erect for long or excess masturbation) | Previous Symptoms: Pain (testicles; penis underside, mostly near base and running up urethra, sharp/burning; perennial region, dull; ejaculatory; post-ejaculatory); Urinary (moderate incomplete voiding; moderate frequency and pain on bladder filling); Sensations (cold in head of penis) | Helped By: Stretching (especially hip rotators and flexors); Yoga (especially lunges, warrior 2, and pigeon) Trigger point release (abdominals; iliopsoas; gluteus muscles and piriformis; bulbospongiosus & ischiocavernosus; thigh adductors); Meditation (mindfulness); Walking & Aerobic Exercise | Worsened By: Stress, anxiety, too much alcohol, lack of sleep, sitting at length | Current prescriptions: nortriptyline (10 mg, 1x at night; for CNS sensitization and IBS) Previous prescriptions: hydroxyzine (10 mg, 1x at night; for urinary symptoms/mast cell stabilization; useful), clonazepam (0.25-0.5 mg, 1x at night; for anxiety/CNS sensitization; useful for short time)
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Another good read on Central Sensitization

Post by MajorSky1 »

A good explanation and some good advice.
https://www.painscience.com/articles/ce ... zation.php
Age: 49| Onset Age: 47| Symptoms: Pain locations: Intermittent left and right front pelvic floor lateral to urethra; occasionally left side tailbone pain (rarer); left spermatic chord pain (become rare); Post BM-Pain helped by distraction during Bowel Movement.| Current meds: None. Helped by: deep breathing, mediation, hiking, distractions, exercise. Approximately 98% improved, varying depending on stress levels.
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Pain Diagrams

Post by MajorSky1 »

Worked these up real quick, and doing so actually took my mind off the pain for a bit. Otherwise, it's been a very rough few days. Any word on which is a better choice: ice? Or Heat? Heat feels better during the application, helps bring blood to the area, but usually seems to leave me hurting worse after. I wonder if ice is better for nerves?

Gabapentin hasn't seemed to kick in yet, but wondering if it's intensifying any depression.
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Age: 49| Onset Age: 47| Symptoms: Pain locations: Intermittent left and right front pelvic floor lateral to urethra; occasionally left side tailbone pain (rarer); left spermatic chord pain (become rare); Post BM-Pain helped by distraction during Bowel Movement.| Current meds: None. Helped by: deep breathing, mediation, hiking, distractions, exercise. Approximately 98% improved, varying depending on stress levels.
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Re: My story of the road to CPPS - MajorSky

Post by webslave »

Try both heat and ice. Take care with ice.
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Remeron?

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Hey webslave, thanks for making the key to my diagram more legible! Looks better. I'll try both ice and heat. I'll try that Ice test/treatment first. Thanks!

It's getting to the point where I think I'm ready to give Remeron a shot. I've read a lot of the threads on it here (not all, yet) and I've seen some positive ones. Webslave, do you recall if anyone ever mentioned that they believed Remeron made a difference for them in reaching recovery? Would you recommend it? I've been really down for the past few days, lower than usual, and it's not good. Might be a little of the gabapentin effect, might not be. The psychiatrist says after a week or two of taking it, you start waking up happy. That's sounding really good to me, because I've been waking up with a lot of dread lately, and my outlook is terrible. I can't picture returning to normal activity in society from the constant pain nagging me. The buspar is helping with my anxiety, but now I'm just very very sad, unhappy. I feel beaten down and blockaded by this crap. Any chance Remeron would diminish the pain at all?

I've read most common side effects are weight gain, and drowsiness (which is why they say take it at bedtime), and sometimes possible bladder tightness. The psychiatrist said for me it would be a good one because it doesn't cause stomach issues. Apprently it helps with H1, so that's a good thing. When my dad was on it in the hospital after his bypass surgery back in Winter, he would physically go through motions of unwrapping food and eating while he slept :wtf: That was a very strange thing to watch. But then, he was on a ton of other drugs too.

Psychiatrist said you should be on it for a year. He also said in a different sentence that most people with anxiety/depression need to be on these kinds of drugs for life. I don't see being on it for a year, and absolutely not for life. Normally, I'm pretty even keeled and happy, believe it or not.

I appreciate and thank you in advance for any words on this.
Age: 49| Onset Age: 47| Symptoms: Pain locations: Intermittent left and right front pelvic floor lateral to urethra; occasionally left side tailbone pain (rarer); left spermatic chord pain (become rare); Post BM-Pain helped by distraction during Bowel Movement.| Current meds: None. Helped by: deep breathing, mediation, hiking, distractions, exercise. Approximately 98% improved, varying depending on stress levels.