Very interesting...I think Webslave will have strong insight into this...
There could very well be a wheat Glutin issue and your UCPPS... It's my belief that allergies can come on at any time in our lives.
Mast cells when they degranulate, they become permeable...There for they release nasty chemicals that cause problems...Been a while since I have thought about the breakdown...
Mark is the master at explaining that stuff...
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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.
Thanks for the response. See, I don't know about the gluten, like just today I had Chick fil a and I was fine. I have been tested for it (rather recently, and within the time I've had CPPS, and was negative on gluten) But I see that eggs can cause a lot of problems.
The doctors still believe that it could have been the disinfectant i used to much of, but I'm going to stay away from muffins, eggs, and the cleaner for a little while then go get test for more allergies as a pre-caution.
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The doctors said I had a "mild" reaction and to simply stay away from whatever it was. The question was, is there a relation with mast cells and my CPPS, as in are people with chronic prostatitis / chronic pelvic pain syndrome more like to have a response like this because of mast cell degranulation that occurs with this condition.
I have never had this happen before and the food I ate, i've eaten recently without any issues, so the docs simply told me just to stay away from it for now and in the next few weeks check with my primary doc.
"Mild" anaphylactic reactions can become severe the next time you have them. They tend to get progressively worse.
If you experience an episode of anaphylaxis, especially if you do not know what caused it, you should see a specialist who can help you pinpoint your allergies. Episodes of anaphylaxis tend to get progressively worse, meaning that if you have experienced one before, the next one may be worse.<source>
UCPPS is associated with an atopic disposition but not anaphylaxis, although I have had an anaphylactic reaction to penicillin.
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Have you found anything in your research that could be a cause that isn't food or medicine related. The only new supplement recently was I was taking fish oil since monday a new type. Do you think cleaning in my office with a disinfectant spray and a decent amount of dust not well ventilated could have caused it? Can they even test for that?
Get tested. Allergies to fish are common, but with this sort of thing guessing is useless and dangerous. The doc will give you a proper test, starting with a skin test.
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attention whoaday and carld- I sure wish we could use the Private message system on here. (WEBSLAVE, can I post my personal email address for someone to contact me directly if they want to or is that against the rules on here? ) I am also a drummer! Professional going on 15 years of playing an average of 5-6 nights a week plus rehearsals and practicing! I have heard over and over that many cyclists have had problems with CPPS. I am wondering if there may be more and more of us drummers dealing with this as well. I have sat on a motorcycle seat (the same model) for 15 years, many days up to 8 hours a day between teaching practicing rehearsals and gigs. This is my passion as well as my primary source of income, so stopping drumming is not an option for me. I have begun to roll up a black towel (doesnt stick out as much at the gig) and sit on it, putting the pressure on the back of the legs and not on the perineum. My URO from the onset has thought I have inflamed my prostate from putting so much pressure on the area for so many years. I would be curious to hear of any others who are drummers, or anything else you guys have done in your drumming to help this situation. This has definitely affected my drumming as well. I hold back more and have to sit more steady now instead of rocking around and all. Any insight or thoughts are always welcomed....
I'm a Professional musician, and have spent much of the last 14 years of my life sitting on a motorcycle style seat for hours at a time. My doctor and I feel that this, couple with a case of epididymitis and extreme anxiety from thinking I had and may have spread an STD, is what has brought on my condition. I am new, have had severe symptoms for 10 weeks (but now that I know what's going on I realize some little pains I had for years in the perineum and penis that I brushed off). It started as simply a red area at the base of my penis and top of left scrotum that itched a little. Then I had some redness and itchiness around the anus and thighs. Then the pain in the testicles started with only very minor sensations on the left tip of the penis. As things have progressed, now I have severe pain in the penis (all the way down not just the tip), pain down the inner thighs, and some 'creepy crawly' feelings all over the area including the testicles. Ejaculation makes it much worse. Trying relaxation techniques, stretching for over an hour a day, and since I can't find any PT's with experience with this in my area, I'm going to try self internal PT today.
I'm with you on the sitting thing. That is usually my primary complaint. My PT does skin rolling and myofascial release in the area thinking there is nerve irritation/impingement. She says to minimize the sitting as much as you can, but it is hard, as I drive a desk.
I haven't found a cushion I like yet...I've tried about 5.
I feel better when I exercise 1st thing in the AM. I can get through more of the day without sitting pain.
I'm scheduled for a second nerve block in 2 weeks, this time in the ganglion impar. I'll keep you posted.
Age: 40 | Onset Age: 38 | Symptoms: Pain in buttocks & ischial tuberosity/lower psoas especially while sitting. Occasional urethra burning. Diagnosis: CPPS/Pudendal Neuralgia | Helped By: Tramadol/Ultracet, Low dose Valium, Q-Urol, Yoga, Stretching regimen, swimming, relaxation, distraction. | Worsened By: Extended sitting at work or in the car, stress. Current Meds: Low dose valium, tramadol, Q-Urol, Omega III Fish Oil
Obviously, caffeine causes a lot of problems for people with our condition, and with other conditions as well. All my life I have gotten headaches, and everything "dangerous" has been ruled out but a lot of times I get this dizzy headaches. Now, for years I have been told that caffeine helps to get rid of a headache, and for a long time it did, but I started making a connection a few weeks back, that I think the caffeine might be causing my headaches...and I did some research and I saw oh boy it could. A few weeks ago I had what I thought was my first migraine with head splitting, throbbing, nausea, et cetera but I also hadn't had soda in a while and wondered if maybe that was it.
I then read there are all sorts of things that caffeine and soda in general can cause, like early heart disease...prostate and bladder issues, et cetera, and it convinces me that I need to get off of it. I def. only drink like maybe 1 or 2 12 ounce cans a day or every other day now but I used to be a 2-liter a day kind of guy...I would go to 7-11 get a super big gulp in the morning...then go refill it at lunch and then again on the way home.
The reason I bring all this up is, I don't know that cold turkey is the best way as it can and has caused near debilitating headaches, fatigue, et. cetera. Knowing that a lot of guys struggle with this, does anyone have any advice about how to proceed? I'm thinking a lot like smokers who maybe use a patch or gum which titrates nicotine, maybe there is a way to titrate on the soda and the caffeine, but is it that simple?
Any advice would be appreciated! I'd like to get off of it with as little head trauma as possible...I've made ridiculously awesome headway with my pelvic pain, but I don't want to go backward by dealing with this too, and I know if can conquer this, it will greatly help both issues!
I have gone off caffeine cold turkey several times and am currently off again for a few months, although I never consumed as much as it seems you do.
If I got a withdrawal headache, I was recommended by my doctor to take 800-1000mg ibuprofen. It seems to do the trick.
Age: 30 Onset Age: 29 Symptoms before: Extreme frequency, urgency, nocturia (x10-20 per night resulting in severe lack of sleep and depression), pain after ejaculation Symptoms now: Urgency, frequency (both much improved) Helped By: Physical therapy, stretching regimen, self massage/TP release, relaxation, distraction, having a full stomach Worsened By: panicking/obsessing, alcohol, caffeine
Detoxing off of caffeine when you're accustomed to a daily intake can be rough. I did so when I was first getting sick, and managed to kick a habit of 3-5 cans per day! Better for your health in general.
I now drink mostly water. When I need soda, I go for clear sparkling water with a little flavoring, and it doesn't seem to bug me at all. No caffeine in it.
I am not a physician. This is not medical advice. Consult your doctor!
Age: 26 Onset Age: 17 Symptoms: Shooting, nerve-like pains throughout the penis, which abruptly hit and leave. Testicular pain, perineum pain, burning/irritative urination, extended pain after ejaculation. Occasionally, some allodynia or ache in the coccyx/sacrum/thigh/buttocks/legs. Diagnosis: Pelvic floor dysfunction, degenerated lumbar disk, and mildly herniated lumbar disk. Helped By: Physical therapy, pain management doctor, hot baths, therapy pool, stretching regimen, breathing exercises, relaxation, distraction. Worsened By: Arousal/ejaculation (worst), constipation, panicking/obsessing, other triggers depend upon current symptoms. Tests/Prior Treatments: Too many antibiotics to count, multiple urine tests (all normal), testicular ultrasound (normal), bladder and renal ultrasound (normal), lumbar and pelvic MRI with and w/o contrast (revealed disk problems), Elavil 25mg (caused retention), Flomax 0.4mg.
Hello coppertop
Please keep us posted about the ganglion impar nerve block. PM is disabled so I can't really use that. I am thinking of trying that out in October next month but after discussing this on this forum and with doctors it does not appear to be of much value. Yet given the fact that I am still not out of the woods I am willing to try it out.
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 ;
I have a sort of success story to mention. For the past two months I have had horrible daily, all day headaches. As you may have read, I have gone to the allergist, and the doctor, been on various medications for the face pain, sinus like pressure, pain in and around the eyes, bad headaches, often throbbing. I've modified my diet, I've done massage, I've done just about everything.
No pain medicine was working for me, and so I though to myself this could be tension, the same kind of tension I have had with the my chronic pelvic pain. NOT one thing ever lowered my pain with chronic prostatitis / chronic pelvic pain syndrome except for biofreeze and the like analgesic creams...my PT had told me that most medicines are made for the central nervous system, and most chornic pain is autonomic and so it doesn't respond the same.
Either way, I have been going a long with this new though of it being tension (which should have been my first thought) all day today. At one point today, there was something in my teeth and i went to pick it out and I pushed hard on my jaw and it reproduced the terrible headache, neck pain, pain behind the eyes, cheek pressure, all of it. My next thought, TMJ. Well there are some mixed results on the effectiveness of it, but while searching I saw some mention of trigger points. BINGO! My next thought, my trigger point manual book. Sure enough there is an entire section about the trigger points than can cause the headaches and face pain, et cetera.
Now, keep in mind I have had a headache ALL DAY LONG SOLID for just under 2 months now. I spent about 5-10 minutes working on all the areas dealing with TMJ, and I kid you not, my headache is 10 percent of what it has been in the past two months! 10 percent...for about an hour, it was completely gone!!! I have not had it relent once in two months, and it's been terrible.
I work with youth and so all the activities in the past few months have been horrible for me, trying to grit and bear it (and more than likely clinching my jaw). I tend to be a ice chewer and finger nail biter too (anxiety I am sure) so I am working on fixing that.
I do have pretty messed up teeth so I am sure there is probably some dental modification of my jaw in my future, but at least in the immediate this is an amazing development!!!
I don't know how many of you have looked to this as a solution, but look at it this way...if myofascial release works for the tense muscles in the pelvis...why not in the jaw...the same person who shows us all the various trigger points in the pelvis also shows us trigger points in the jaw.
It is definitely worth a try. From now on, I am not going to freak out and think the worse, and immediately go to the trigger point manual. I told my wife tonight to remind me to first and foremost search for trigger points and tension, then go further.
I hope this helps any and all of you! I am going to continue it daily ( i couldnt do more than one tonight, as it is quite sore) I am excited about this new development. I am also going to eat soft foods for the next few days too to give my jaw a break!
Age: 30 Onset Age: 29 Symptoms before: Extreme frequency, urgency, nocturia (x10-20 per night resulting in severe lack of sleep and depression), pain after ejaculation Symptoms now: Urgency, frequency (both much improved) Helped By: Physical therapy, stretching regimen, self massage/TP release, relaxation, distraction, having a full stomach Worsened By: panicking/obsessing, alcohol, caffeine
