calguy wrote:Going to try and see what PT can do this week and go from there.
I would learn to do the internal work your self. Have your PT go over this with you. The best results come from learning to do the self treatment.
Also I'm not sure if you are doing any relaxation and anxiety control on a daily bases. This is a huge part to recovery. Without an easy peaceful feeling, the healing can't start. So check that and see if you are relaxing daily...moment to moment and evening relaxation.
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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.
I have been doing relaxation every night and it puts me right to sleep. I feel great when I am laying down with relaxation cd playing and totally relaxed. In fact I look forward to those moments which is kinda of sad because I used to be so active throughout the day. I do try to stop and do some deep breathing and relax the pelvis but I may not be doing a good enough job. I have been avoiding my own internal work as I dont like the idea of sticking something up there to get to the spots I need to. I was also going on PT advice that I felt okay inside. I am going to tell her to be more aggressive with internal work and see what we can find. I know I have to get over my probably with sticking something inside bum but just dont like the idea.
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!
calguy wrote:I know I have to get over my probably with sticking something inside bum but just don't like the idea.
I would rather stick my own finger up my ....It's a very uncomfortable spot to have a PT do this, but I got over it quick...Unless the PT is some hot babe with a pair of natural big knockers. Then I would do PT every week...
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.
Fingers dont really reach hard to reach spots and I'm afraid I could hurt something with tool. I guess I may have to try eventually though. By the way my PT isn't bad on the eyes.
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!
I am in my 7th month of this crap and from what I've read and been told I can expect to get a worse or have many changing symptoms during the first year. Mine have been getting a little worse and can't figure out why, may be due to some of the yoga moves I was doing, so cut them out for a while. Or may need to add some meds like Elavil. Anyways my point is, that even though I am doing everything right, I guess I just have to keep doing what I am doing and just suffer for a little while. Everyone I've chatted with has said almost the same thing. -- It gets better, or give it some time, first year or two is the hard part. I will try not to get down and feel like PT and everything I'm doing is not for nothing and will pay off and I hope all the new guys in there first year do the same.
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!
By the time I was at my seventh month, I was at my worst and I found this site, joined, found a PT followed my version of SP....Learned to take control of this myself and not depend on F**king doctors/uros other than getting scripts and slowly started to get well as I'm sure you will as well.
Cheers...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.
Thanks for the vote of confidence Carld. After you started protocal how long till you started to see improvements? My point was that I have been seeing qualified PT for 2 months now(may need more internal work), on supplaments(prostate pils, flower plloen ect..) and trying to focus on relaxation--and still getting a little worse in the pain department. At 7 months I think you just started your protocal. I just wanted to tell all the new guys to keep pressing on and that this doesnt get better over night from I've read no matter what your doing. Thats what I'm telling myself. Thanks again Carld
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!
I can't speak for Carl but I can say that I didn't start to feel even a bit better until about six months, slightly better after twelve and only really quite a bit better after twenty. YMMV though.
Funny enough my worst pain was around mid year, prob month 7-8 around that time. Had pain in my groin radiating down into my legs, my thighs, behind my knees. I still get pain now, but not much, for example, today I have had the odd feeling like someone is stabbing my right testicle, comes and goes every hour or so but it lasts less than a second. I've never taken any medication for this and still intend to try and get through it without any. I have been through a complete 8 year relationship breakdown, change of jobs into one I hate, financial problems, you name it. How I didn't have a nervous breakdown I dont know.
For me, the most important thing was trying to stay positive. I kept reading this site about how people who were in my situation have pulled through. When I had the worst of the pain, yes I would have a moan on here, and people on here who I would refer to now as good friends helped me through these times. With the pain I would say to myself, "it will go". I would just accept it, try and ignore it and get on with my day.
Its still at the back of my head now, what if it gets really bad... but I can't live my life like this. If it is one thing this disease has taught me, its to not wait around and to get on with life and enjoy it as best I can, see the world and treasure each day. People in normal health with no worries dont appreciate this. I didn't. I do now and I am thankful of that.
So my advice to you is to focus on the fact that you are not alone, I went through it, others have too, but we are still here and more importantly we are now feeling better. The pain you have now WILL go, but when it is ready to. You can help it along the way by thinking positive, getting on with your life, focusing on other things instead of the pain, and always saying to yourself, it will go away, this isn't forever.
I would say my pain at worst probably went up to a level 6 during that time in month 7-8, I was on the borderline of taking painkillers. I didn't because (1) I didn't want to lower my pain threshold and (2) I was giving in to it. I am thankful so far (touch wood) I havent experienced pain higher than this, some people have and they are more qualified to give you advice regards what to do then, but my own story is that this thing is like a rollercoaster, you really appreciate the ups, and not so much the downs, but its a ride which will eventually come to an end. So jump onboard, pull down your overhead restraint, put your head back and hold on tight!!!! :)
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!!! :)
Time especially after 2-3 years chronic prostatitis / chronic pelvic pain syndrome often improves think for many
Regarding pain killers dont think you really lower your pain threshold by avoiding them if you can lesson your pain with a med then you are improving the quality of your life why suffer
If you had chronic headaches or back pain etc then most would not think twice about taking pills there seems to be a bit of a stigma against pain killers for no reason the worst symptom of chronic prostatitis / chronic pelvic pain syndrome is pain i know many dont work but if means taking a strong prescribed one for releif then hey so what our pain deserves relief .
What if thoughts rarely happen and are a waste of energy and create stress avoid these pointless thoughts ,if the worst did happen you would manage again like you did when this first hit
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
I started to feel my improvement shortly after 1 year and really started to improve at approx. 18 months into this. Right when I changed from . Any accredited quercetin product to Quercetin...not for sure certain
Infact, this month is my 2 years since my onset...and enjoying life even when I have slight symptoms. It use to be I would think about this all the time in a destructive way always worrying if and when I would get well again. Now I think about it everyday in the way that I use it to keep my self in check and make sure I'm relaxed and keeping on the right path in a mental and physical way. I think of it as my gift to stay focused and in charge of taking care of my self. If I feel irritated or flaired, then I know I'm at dis-ease and need to get back in my flow....
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.
When I lay on my side the muscles in my lower abs (almost around bladder) and legs tighten up and start burning a little. Only other time I feel this is when I'm sitting for long time or on hard chair. Is it that the pressure or weight puts pressure on muscles and causes this burning? When I lay on back everything is okay. Very strange as everything else is with this problem.
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!
Laying on my left side is about as bad as sitting. Occasionally I have pain laying on my back.
I am not a doctor too!
Age 64, sudden onset 5/06 during bout of flu, colitis, lung and liver problems. Pain in penis, then moved to rectum. No urinary symptoms. Use Lyrica, Elavil, paxil, Xanax, morphine, vicodin, relaxation, pads for sitting, 100+ PT sessions. Sensitive to gluten, milk protein, soy. I have CFS, anxiety, GERD, Barrett's, colitis, kidney stones, one of which referred pain to penis.
can internal work really help pain in my groin, burning in leg and tightness in lower abs. If I can't recreate pain then its not going to help right? Or am I not hitting the right spots? Just dont want to keep feeling around in there and not getting any where.
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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Everyone I've chatted with has said almost the same thing. -- It gets better, or give it some time, first year or two is the hard part. I will try not to get down and feel like PT and everything I'm doing is not for nothing and will pay off and I hope all the new guys in there first year do the same.
