Haven't been on the board for a while...I'm a former moderator and friend to the site...Wanted to share an interesting ironic short story...
My regular doctor reached out to me and asked me if I can help a patient of his who has UCPPS...I look forward to trying to help him by telling him what has helped me and to encourage him and give him hope. I will direct him to this site. I already sent the link and my starter list to my doctor to send to him...
Imagine that
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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.
At least you have met an honest and sincere doc who isn't afraid to admit that you have more knowledge than him! I've met so many who have categorically denied that anything could be wrong with me due to the fact that I have passed the usual tests. None of them have been interested in learning more about the muscle point/trigger point angle and some have even advised me not to go down that path and to simply learn to live with it/stop thinking about it.
Age: 39 | Onset Age: 17 | Symptoms: Constant feeling of needing to urinate felt in the tip of penis. Frequency. Urgency. None of the typical pain associated with CPPS. | Helped By: Valium, Klonopin, and very hot baths, followed by lying down still/doing relaxation. Also made almost symptom free for a few seconds following a bowel movement. | Worsened By: stress, anxiety, skipping meals, lack of sleep, extended sitting, coffee, alcohol. NO other pain or discomfort although after ejaculation symptoms will usually get worse unless I lie still for 20 minutes or so. | Other comments: Symptoms began at the moment of ejaculation, disappeared after a few months and then returned a few months later and have not gone away since.
CMT23 wrote:At least you have met an honest and sincere doc who isn't afraid to admit that you have more knowledge than him! I've met so many who have categorically denied that anything could be wrong with me due to the fact that I have passed the usual tests. None of them have been interested in learning more about the muscle point/trigger point angle and some have even advised me not to go down that path and to simply learn to live with it/stop thinking about it.
+1
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.
