Just curious to discuss it with members here... Do you think (more than just a wishful thinking that virtually all of us share) based on your current knowledge and experience that an effective treatment (one or more) will be found till 2030-2040 for CPPS? (not even talking about a cure).
Research in many directions is still ongoing, but personally I think it has got "stuck" as the diverse aspects of this phenomenon keep confuse the researchers (even at MAPP Network).
Maybe using new genomic and proteomic tools in clinical studies will shed significant light on this "thing" or maybe not...
CPPS - The future
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Wolfcub
- Experienced
- Posts: 117
- Joined: Sat Oct 13, 2012 12:06 am
- Location: Israel
CPPS - The future
Age: 30 | Onset Age: 19| Symptoms: Urinary frequency, Urinary urgency, constant 24/7 sensation in the penis (in the tip mainly - burning/pressure/discomfort/"wetness"), Nocturia, discomfort and pressure in the pelvic region radiating to the abdomen and becoming severe as time passes since last urination (resolved in 2014 by myofascial release), Stream velocity is somewhat slow and prolonged with an average velocity of ~13cc/min (and max 18cc/min) found in flowmetry test when bladder is filled with 500cc at age 25 (I always feel like I need to press my abdomen to urinate, improved later on when using alpha blockers)| Helped By: especially MYOFASCIAL RELEASE (especially in the areas of hips and abdomen) - generally resolved my abdominal aches, but penile symptoms remained the same| Worsened By: Coffee and possibly some other food as well| Other comments: Quercetin and acupuncture helped me no more than a placebo effect. Age 25-26: Diagnosed with indirect inguinal hernia and medium hydrocele at the same side. After operation many of the acute symptoms disappeared, but the chronic urinary and pelvic symptoms remained much the same.
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Caedar
- Old Hand
- Posts: 319
- Joined: Mon May 20, 2013 9:08 pm
- Location: Massachusetts, USA
Re: CPPS - The future
Considering I've found about 90% relief for about 90% of the time, I think we've already got effective CPPS treatments for at least some phenotypes. I think the most important advances we're just starting to figure out are how to reverse the changes to the central nervous system induced by chronic pain. Currently we can indirectly reverse those (through meditation, reducing stress, re-contextualizing pain, etc.) but a more direct method would be helpful. This is a drive of pain research, so I'm sure at least some kinds of effective CNS treatments will be figured out by 2040.
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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MajorSky1
- Old Hand
- Posts: 378
- Joined: Mon May 25, 2015 3:13 pm
- Location: Grand Rapids, Michigan
Re: CPPS - The future
I think there is more to be done. My urologist said yesterday that she would like to see more definitive studies done. In my opinion, the vibe going around is that it's just starting to be taken seriously. Current treatment do work well for some, but for others with the same or very similar symptoms, the results often seem to differ greatly.
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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webslave
- Maintenance
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Re: CPPS - The future
I suspect there will never be a simple cure for what is a complex, multifactorial condition. Lots of things help (some a great deal), but no one thing, on its own, cures.
Good News! The great ProstaQ is BACK at last! You must try it.
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European
- Senior Veteran
- Posts: 241
- Joined: Sun May 11, 2014 3:35 pm
Re: CPPS - The future
I think the things are getting changed. At least the clear tendency is to abandon every monotherapy. CPPS cannot be healed/cured by sequentional monotherapy but by highly customized targeted management with three fundamental layers> PT (trigger point eradication, dry needling, stretching), relaxation and pharmacological assistence (benziodiazepins, Lyrica, Elavil...) Dont think that anything will be added to this portfolio in next 10 years...
Age: 41 | Onset Age: 36 | Symptoms: Chronic pain in the penis, groin, pubic area and pelvic muscles, mainly ischiocavernosus area | Helped By: Elavil, PT | Worsened By: Stress, ejaculation, depression | Other comments:
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blasteen
- Beginner
- Posts: 46
- Joined: Mon Apr 17, 2017 11:03 pm
Re: CPPS - The future
I believe taking the necessary steps to cause a greater level of awareness to this condition can certainty aid a faster response from academia and pharmaceutical companies. I guess for them to justify a move towards any means, they require to see the devastating impact of this disease effecting many men. And this could be achieved by groups and communities such as this, I believe these groups should start having a more stronger voice by reaching out to media and the government
Age:30 | Onset Age:16/25 | Symptoms: pelvic pain, lower back pain, pain after urination and ejaculation, burning during urination, abominal pain, IBS | Helped By:Not seating on most chairs, diet, not lifting heavy, summers, wearing warm trousers, less frequent ejaculation, consumption of a lot of water, prostaQ | Worsened By: seating on hard chairs, lifting heavy objects, cold weather, diet with allot of acidic foods, | Other comments: