Hi guys. First off, I cannot tell you how glad/relieved I am to have found this site. And I couldn't be more surprised to learn how many guys around my age are working to get through this.
As is the case with many, I'm sure, I had never heard of prostatitis, chronic or otherwise, until the 2nd (of 3 )urologists I saw diagnosed it. And at the time, I had no idea what I was going to be dealing with - from past experiences, an 'itis' could be cured with an antibiotic and rest. The only symptom to reveal itself at that point was the dull pain on the left side of my pelvis, which had been there for about a year and a half prior, and I believed was probably related to working out. This urologist made it out to be no big deal, told me to lay off booze and steer clear of spicy foods, sent me on two rounds of Doxycycline, and then retired. At this point, my symptoms had matured and things had become pretty unpleasant.
The third urologist I saw looked at me with a sense of disbelief saying, 'now what is a young guy like you doing in my office?' A quick, rather rough, prostate check brought forth a stinging pain that I had not experienced on previous exams. Sure enough, he said, "prostatitis". We did a round of Cipro and Ibuprofen, which didn't do much - things had even grown a little more uncomfortable. An ultrasound revealed only a slight enlargement of the prostate though some small calcifications were present - signs that my poor prostate had, in his words, "been through the wringer." I gulped. As the Cipro did nothing to help, nor did the previous rounds of Doxycycline, I was told that this was something I was basically going to have to live with. Nothing much could be done. And I was told to try to concentrate on other things.
From what I've read on this forum, this is a story very similar to that of others. This is both welcome information and, I have to say, comforting. Nobody I know has heard of this. I don't have close male friends, and those that I do hang out with certainly aren't talking about their prostates, at least not at this stage of the game. This is the kind of thing that leaves you just not knowing where to turn. And there is not a great deal of positive information out there.
I'm really encouraged by what I've been reading here, and how open everyone seems to be about discussing what's going on with them. Knowing that I'm not the only guy out there with this has already helped my outlook a bit - and things have been pretty grim for a while.
So, I'm curious to know, there is a lot of talk about doing exercises, and stretches, trigger points, working on the pelvic floor, etc., and I'm wondering where I go to find more information about these stretches and exercises, and what/where exactly my pelvic floor is. Does all of this come from the Headache in the Pelvis book? And I see a lot about 'the protocol' which I am guessing is the Stanford/Wise-Anderson Protocol, but does one have to attend a clinic to learn about these different therapies? And physical therapists? How would I find one in my area who would be familiar with my situation? Would anyone happen to know of one in the New York City area?
I have noticed some alleviation of symptoms with acupuncture and Chinese Medicine - which I think is probably the result of the calming effect of acupuncture, at least for me, which reduces stress thereby reducing pain. But the effects are temporary. The notion that much of this is caused by muscle tension makes a great deal of sense to me as I have noticed that all tension in my body seems to be held right in my pelvis. No small wonder that things have gone haywire.
Any thoughts on how to get started with some sort of therapy would be greatly appreciated.
Hello - new to the group
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cjt
- New Member
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- Joined: Sun May 13, 2007 8:22 pm
- Location: New York, NY
Hello - new to the group
Age: 35. Age of diagnosis: 33. | Symptoms: dull pain in testicles, usually the left side, dull pain in perineum, occasional 'golf ball in the rectum' feeling, general tension/tightness in the whole pelvic region, pain/discomfort after ejaculation. Helped by: acupuncture (slightly); exercise; stretching. Worsened by: ejaculating; alcohol, somewhat; anxiety & stress
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HelpADude
- Experienced
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- Joined: Tue Jun 06, 2006 3:05 am
- Location: Northwestern USA
Welcome to the club... I know, you rather not be here. My Uro didn't give me any anti-biotic but also said the same "don't think about it" part. If it were only that easy. I tried not to "think" about for weeks before I saw my Family Doctor and another 2 weeks before seeing a urologist.
Ya, I started out with dull pain too and also a "tight band in the scrotum" feeling. But has been replaced with other issues later on. Don't be surprised to see your symptoms changes and maybe even go away for a while then return.
Get the book AHIP asap, it's a good introduction to the Stanford/Wise-Anderson Protocol which consists of trigger point therapy, stretching techniques, and relaxation techniques. Lay off any kind of stimulants like coffee and soda pop.
You are right at the age where most men come down with this condition. I got it last year about this time and I was 35. My condition improved slowly over the last year and I'm 99% better and lives a mostly normal life but still got some distance to go before I can say I'm back to normal.
Be good to yourself, take it one moment at a time. I was so stressed out when I first encountered this my heart would beat so fast that I can't get to sleep. Meditation helped a lot with that.
Be sure to read all the stories in the Success Story forum and also check out Dr. Sarno's work as well. Hopefully, you will post your own success story soon.
Cheers,
-H
Ya, I started out with dull pain too and also a "tight band in the scrotum" feeling. But has been replaced with other issues later on. Don't be surprised to see your symptoms changes and maybe even go away for a while then return.
Get the book AHIP asap, it's a good introduction to the Stanford/Wise-Anderson Protocol which consists of trigger point therapy, stretching techniques, and relaxation techniques. Lay off any kind of stimulants like coffee and soda pop.
You are right at the age where most men come down with this condition. I got it last year about this time and I was 35. My condition improved slowly over the last year and I'm 99% better and lives a mostly normal life but still got some distance to go before I can say I'm back to normal.
Be good to yourself, take it one moment at a time. I was so stressed out when I first encountered this my heart would beat so fast that I can't get to sleep. Meditation helped a lot with that.
Be sure to read all the stories in the Success Story forum and also check out Dr. Sarno's work as well. Hopefully, you will post your own success story soon.
Cheers,
-H
Age: 38 Onset: April 2006 Current | Symptoms: Update, doctor found no hemorroid but pruritus ani. Was doing very good for a while but lately are having more flares. | Symptoms: raw, irrated feeling, spams in balls and bladder area. Drugs: Omega 3 oil only and just started Prosta-Q in Feb 2008, currently not taking Prosta-Q. Treatment: relaxation, AHIP stretches, the book EVERYDAY ZEN, Worsened by: Coffee (not 100% sure)
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kevin
- Retired Mod
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- Location: USA
Hi cjt,
Yes, a lot of the material on this forum is based on the Stanford/Wise-Anderson Protocol, which you can read about in A Headache in the Pelvis.
Marilyn Freedman in Great Neck (Long Island) has a good reputation:
viewtopic.php?=&p=9307
Yes, a lot of the material on this forum is based on the Stanford/Wise-Anderson Protocol, which you can read about in A Headache in the Pelvis.
Marilyn Freedman in Great Neck (Long Island) has a good reputation:
viewtopic.php?=&p=9307
Started: Spring 2003; high urinary frequency and pain associated with bladder filling; urinary hesitancy; pubic/prostate/perineal discomfort; Helped by: trigger point therapy, Afrin nasal spray, Cymbalta, hydrocodone (small doses), distraction. Makes worse: sex.
Not medical advice. Consult your doctor.
Not medical advice. Consult your doctor.
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LifeInTurmoil
- Beginner
- Posts: 27
- Joined: Thu Sep 09, 2004 5:50 am
Hi CJT,
Welcome to the "club!" I, like you live in New York City and have been suffering for almost 4 years now with this debilitating illness. It has turned my whole existence into a horror of constant pain! I have been working on physical therapy both internal and external for a year now with a Great doctor who resides in White Plains, NY. He can be reached by using Metro North. He is the only chiropractor that I know who actually knows how to work on INTERNAL as well as external trigger points! He is also working on my herniated disk in my back which we believe is an agitator to my symptoms. I cannot speak highly enough about this doctor. He has been going all-out to help and advise me and to keep my spirits up when I am feeling most grim about this condition. I wish all doctors were as caring as he is about his patients. If you are interested in speaking with him, drop me a private message and/or respond on this post and I will give you his name and telephone number. I also know of another person who lives in the city with us who has/had been suffering with this condition for quite a lot longer than I have been. He has become a great friend and supporter of mine and he was the original guy that recommended the doctor that I see in White Plains. Remember that you are not alone and hang in there!!
LifeInTurmoil
(Joe)
Welcome to the "club!" I, like you live in New York City and have been suffering for almost 4 years now with this debilitating illness. It has turned my whole existence into a horror of constant pain! I have been working on physical therapy both internal and external for a year now with a Great doctor who resides in White Plains, NY. He can be reached by using Metro North. He is the only chiropractor that I know who actually knows how to work on INTERNAL as well as external trigger points! He is also working on my herniated disk in my back which we believe is an agitator to my symptoms. I cannot speak highly enough about this doctor. He has been going all-out to help and advise me and to keep my spirits up when I am feeling most grim about this condition. I wish all doctors were as caring as he is about his patients. If you are interested in speaking with him, drop me a private message and/or respond on this post and I will give you his name and telephone number. I also know of another person who lives in the city with us who has/had been suffering with this condition for quite a lot longer than I have been. He has become a great friend and supporter of mine and he was the original guy that recommended the doctor that I see in White Plains. Remember that you are not alone and hang in there!!
LifeInTurmoil
(Joe)
Age: | Onset Age: | Symptoms: | Helped By: | Worsened By:
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cjt
- New Member
- Posts: 12
- Joined: Sun May 13, 2007 8:22 pm
- Location: New York, NY
Thanks, guys. I will certainly get ahold of the book and get started with that.
You're right, Help, I've noticed a definite fluctuation in the symptoms and even several occasions where they seemed to have faded away for a few days only to return again.
Thanks again for the words of encouragement.
Hoping to get a 'success' story up there before too long.
You're right, Help, I've noticed a definite fluctuation in the symptoms and even several occasions where they seemed to have faded away for a few days only to return again.
Thanks again for the words of encouragement.
Hoping to get a 'success' story up there before too long.
Age: 35. Age of diagnosis: 33. | Symptoms: dull pain in testicles, usually the left side, dull pain in perineum, occasional 'golf ball in the rectum' feeling, general tension/tightness in the whole pelvic region, pain/discomfort after ejaculation. Helped by: acupuncture (slightly); exercise; stretching. Worsened by: ejaculating; alcohol, somewhat; anxiety & stress
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scoobysnacks
- Retired Mod
- Posts: 696
- Joined: Tue Jan 20, 2004 4:51 am
- Location: USA
Welcome.
In NYC there are quite a few therapists.
I second Kevin's recommendation, though I hear she is quite pricey and tough to get into. You might want to call Dr. David Wise or email him, his contact info is on the first page. He can give you a list of PTs in NYC.
I did attend his clinic, which was vital for me. I was not getting the direction I needed by any uro or PT in Ohio. If you can get out to see Tim Sawyer, his knowledge and bedside manner is amazing.
Regards,
Ss
In NYC there are quite a few therapists.
I second Kevin's recommendation, though I hear she is quite pricey and tough to get into. You might want to call Dr. David Wise or email him, his contact info is on the first page. He can give you a list of PTs in NYC.
I did attend his clinic, which was vital for me. I was not getting the direction I needed by any uro or PT in Ohio. If you can get out to see Tim Sawyer, his knowledge and bedside manner is amazing.
Regards,
Ss
Age:29 | Onset Age: 25.5 | Symptoms: Initially burning in prostate/perineum, burning in urethra, uncontrollable muscle contraction before urinating, dual ache in groin, left testicle pain, feeling of golf ball in rectum, soarness in rectum, and muscle spasms, now mainly very mild urinary tract inflammation, burning mildly after ejaculation, some days after physical activity involuntary mild muscle contraction before urinating | Helped By: .5 mg of Ativan, Aleve (naproxen), quercetin, alcohol in large quantities (vodka and soda), stretching, walking, internal massage the perineum area and levators. | Worsened By: sitting, weightraining, jogging, coffee, caffeine in general, alcohol bothered me at first, overdoing sex
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LifeInTurmoil
- Beginner
- Posts: 27
- Joined: Thu Sep 09, 2004 5:50 am
A friend of mine used to go to see Marilyn Freedman in Great Neck (Long Island.) From what he told me she was very nice and understanding but she was VERY expensive. We are talking between $200-$500 per visit expensive and she does NOT except insurance!! I recommend that you give my doc in White Plains a try first because not only is he really good, but he also takes most major insurance plans as well. Let me know when and if you want to give him a call. Stay well!!
Age: | Onset Age: | Symptoms: | Helped By: | Worsened By:
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carld
- Retired Mod
- Posts: 1554
- Joined: Mon Aug 21, 2006 11:49 pm
- Location: Newbury Park
Welcome CJT,
I find it amazing that so many Men in their 30's come down with this. It may have to do with the fact many men by the time they get to 30 something or early 40's are finally established with family, home and full time job supporting their families. Although the fruits of our labor can have it's reward and the joy of a family, the stress that comes with it sets up the condition to hit us. I think for many men we run through our 20's tying to figure out what the hell we are going to do with our lives which plants the seeds of stress. So it seems like our 30's makes sense that this condition goes full blown for many men.
You will find the many posts here to be very helpful...
I find it amazing that so many Men in their 30's come down with this. It may have to do with the fact many men by the time they get to 30 something or early 40's are finally established with family, home and full time job supporting their families. Although the fruits of our labor can have it's reward and the joy of a family, the stress that comes with it sets up the condition to hit us. I think for many men we run through our 20's tying to figure out what the hell we are going to do with our lives which plants the seeds of stress. So it seems like our 30's makes sense that this condition goes full blown for many men.
You will find the many posts here to be very helpful...
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.
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.
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cjt
- New Member
- Posts: 12
- Joined: Sun May 13, 2007 8:22 pm
- Location: New York, NY
Thanks, SS. I will be in touch with Dr. Wise.
And, Joe - I'd be interested in having the name of your chiropractor on hand as well - thank you. As you say, White Plains is accessible on MetroNorth.
Carl - I agree. Amazing how many guys in their 30s are dealing with this (and younger guys, too). Certainly more than I imagined. I actually thought I was one of only a few. At least that what one of my urologists lead me to believe. As men, we know the possibility of developing some sort of prostate issue is out there, somewhere, but its certainly not something I ever gave any thought to until it was upon me.
From what I've gathered, this issue is just sort of percolating away in many of us, long before we have any idea what's going on. One urologist told me it could take a couple of years for the symptoms to really manifest themselves. And whatever anxieties we are carrying around only exacerbate it without our even knowing it.
For me, attempting to facilitate a career change, coupled with a fairly traumatic event brought it all to a head. And now I have the feeling that I'm about to start getting to know myself in a way I never expected I would have to.
And, Joe - I'd be interested in having the name of your chiropractor on hand as well - thank you. As you say, White Plains is accessible on MetroNorth.
Carl - I agree. Amazing how many guys in their 30s are dealing with this (and younger guys, too). Certainly more than I imagined. I actually thought I was one of only a few. At least that what one of my urologists lead me to believe. As men, we know the possibility of developing some sort of prostate issue is out there, somewhere, but its certainly not something I ever gave any thought to until it was upon me.
From what I've gathered, this issue is just sort of percolating away in many of us, long before we have any idea what's going on. One urologist told me it could take a couple of years for the symptoms to really manifest themselves. And whatever anxieties we are carrying around only exacerbate it without our even knowing it.
For me, attempting to facilitate a career change, coupled with a fairly traumatic event brought it all to a head. And now I have the feeling that I'm about to start getting to know myself in a way I never expected I would have to.
Age: 35. Age of diagnosis: 33. | Symptoms: dull pain in testicles, usually the left side, dull pain in perineum, occasional 'golf ball in the rectum' feeling, general tension/tightness in the whole pelvic region, pain/discomfort after ejaculation. Helped by: acupuncture (slightly); exercise; stretching. Worsened by: ejaculating; alcohol, somewhat; anxiety & stress
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LifeInTurmoil
- Beginner
- Posts: 27
- Joined: Thu Sep 09, 2004 5:50 am
CJT,
I'm sending you my doc's name, tele#, address, and email through your private message option. I already spoke to him about you and he said that he would be glad to speak with you. He's a real nice guy and A#1 in my book. He also has a very impressive medical background and knowledge. I truly hope that he will be able to help you when and if you are ready to see him. I really believe that if I had known that he existed four years ago, he may have been able to help me sooner and this condition would not have "dug" itself in so deeply by now. And get this, he grew up just around the block from me and even went to the same grammar school as I and I never even knew that he existed until a friend of mine recommended that I see him!! Some strange coincidence don't you think!!?? Good luck and let me know that you received the info from me. I'll send it now.
I'm sending you my doc's name, tele#, address, and email through your private message option. I already spoke to him about you and he said that he would be glad to speak with you. He's a real nice guy and A#1 in my book. He also has a very impressive medical background and knowledge. I truly hope that he will be able to help you when and if you are ready to see him. I really believe that if I had known that he existed four years ago, he may have been able to help me sooner and this condition would not have "dug" itself in so deeply by now. And get this, he grew up just around the block from me and even went to the same grammar school as I and I never even knew that he existed until a friend of mine recommended that I see him!! Some strange coincidence don't you think!!?? Good luck and let me know that you received the info from me. I'll send it now.
Age: | Onset Age: | Symptoms: | Helped By: | Worsened By:
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LifeInTurmoil
- Beginner
- Posts: 27
- Joined: Thu Sep 09, 2004 5:50 am
Oh, and I also forgot to mention that the friend who recommended him to me I met on this Forum and he lives in Queens! He has had chronic prostatitis / chronic pelvic pain syndrome since he was about 16 and he is now 40! He is doing MUCH better these days I am happy to say. He has led such an extraordinary life while he suffered with this ailment that he should write a book about his experiences. He is a testament of great will power and hope to us all!!
Age: | Onset Age: | Symptoms: | Helped By: | Worsened By: