New Here - Hello

[mike7311]

Hello all, My name is Mike. I'm 46 years old married with 2 kids and have been battling this condition since the first week in Nov 2010. First visit was to my GP, she assumed a UT infection and put me on Cipro for 8 weeks. Before the 8 weeks were up I had to go back due to pain in the shaft of the penis and in the testes. She wrote me up for percocet once at bedtime and referred me to a Urologist. My first visit with him he asked the same questions about my life. They did tests of urine/blood/DRE/STD/PSA all came back normal. This didn't happen all in one day mind you. I live in Mississauga Ontario, So our "great" health care system takes its time. During the month or so it took for the results of the urine/blood etc to come back I went back to my GP several times for pain. My GP put me on Lyrica 225 total plus Flomax. This now brings me to mid Jan 2011. My Uro did the Cysto procedure and another DRE. He said that all looks good, no inflammations found. On my follow up appt which was less than 5 mins he patted my on my head and said it will pass in time but he referred me to another Uro that deals with more "problematic" issues. This now takes me to mid March 2011. I saw this Uro and he did another DRE and gave me Celebrex for use on top of my other meds and to see him in 2 weeks. 2 weeks go past and nothing, so when I see him again I get to pee into a container that measures vol etc. I'm in the low normal range for that test. Uro #2 says that I should try PT or Massage and it will get better on its own over time, then refers me to Mount Sinai hospital in Toronto. My appt there is for April so in the mean time I see my chiro for spinal work and a RMT for trigger point release massage (painful at times). Still no positive results. Now Its early April and I'm at Uro #3. this one I get a MRI/bladder ultrasound, more STD/Urine/DRE etc all come back normal. He asked me to try Keflex to replace Cipro...no results. Pain is 7/10 all the time. I've had to reduce to work hrs to part time. My sex life is nothing. So now its late April and I see another nurse/dr out of the same clinic in Toronto. He did a prostate massage and milked some fluid for testing. He came back and said there was inflammation there. Not sure what he can see or if it's a scam (150.00 for the first session 60.00 after that). I go back for round 2 today. I also got a referral to a chronic pain clinic. I was there on Monday and was given a nerve block into the groin/pubic bone area.....no effect. I also now have another test for ultrasound of the testes and x-ray pelvic bone planned. The pain is bad, I feel so depressed. I can barely function terrible thoughts race through my head is there any help for me/us? If anyone can add there feelings or thoughts please do.

List of Meds that I can remember
Ciprofloxacin - 90+ days
Keflex - 14 days
Doxycycline – 10 days
Flomax – 90+ days
Tylenol NO. 3 – 20 Pills – No effect
Percocet – 30 pills – some relief
Lyrica – 225mg – some effect to start/none now
CELEBREX – no effect noted.
Saw palmetto
Muti Vitamin
quercetin
No caffeine
No Alcohol
None Smoker
No spicy foods
limit sugars
no soda drinks
etc

God bless.
Mike

[webslave]

Hello and welcome, you are certainly one of us, and there is an extremely good chance that this will be over if you are prepared to calm down, stop seeing urologists, stop taking antibiotics, and read, read, read the advice in this forum.

[mike7311]

I'm ready but where to start?

[chewydog]

Spend some time on this site and read up on it! You're not alone ! If your prepared to help yourself it will get better!

[webslave]

I'm ready but where to start?

viewtopic.php?f=34&t=6475&p=36256#p36256

[chillysun]

Hi fellow Canadian! I'm from Montreal Quebec...I've been hit by prostatitis real hard one year ago while under great load of stress...I'll share with you what I've learned so it can helped you. I had every symptoms you could imagine...frequency, pain with ejaculation, pain sitting, burning, tingling and numbness in my legs and perineum. I can tell you, I hate that fucking prostatitis...real real difficult to deal with. It's normal to feel angry and depressed, who wouldn't under so much pain? It is completely normal to have those emotions. I'm a medstudent who's done with medschool...I've done that despite the pain, even though sometimes I wanted to quit. I tell you this so you don't feel alone, because people don't really understand until they've been hit by this. Now, some positive things to help you out...my uros told me 70% of patients get better with time (study ) which seems to be true since many guys on this forum have gotten better. Try to find a physical therapist who specializes in pelvic floor dysfunction in your area...it has helped me out to calm down the pain down there (I'd say maybe by 15%-20%). ..don't expect a miracle cure, I haven't found one yet, and those who claim to have that miracle cure, in my opinion, may be just quacks who wants to get money from desperate people...be aware...but definitely physio helps a great deal...stretching helps also...stretching from headache in the pelvis are great..a stretch that has helps me out is trying to look under my chair while sitting on it...it stretches sacroiliac joints...Medication may helps also from chronic pain condition... I've just started Elavil to give it a try...it doesn't make you like a zombie and what we've got to lose seriously? If I Have to take it all my life, I don't care...I really think multidisciplinary approach is the way to go to control this problem...psychologist could help you deal with anxiety issues and give you strategies to control the pain, and not the other way around...Try to control your stress (GOD that is difficult...still working on that everyday...really difficult because in chronic pain anxiety and depression is kinda intertwined...when you're in pain, you're anxious and then depress which makes the pain worse...and anxiety can make pain worse...one objective in pain management is to try to break that cycle of anxiety-tension-depression-fatigue...so take the problems from multiple angles...Other things that have helped me...light exercise with no impact ( like elliptic or stairmaster or swimming...hot bath..cut down caffeine and alcohol but doesn't seem to be that big of a problem for me right now. I'd say I'm maybe 50% better one year and a half later...but I've just started Elavil so if it calms down the nerves down there...maybe I'll get an other 20-30% which would be great...

My theory, and take it with a grain of salt, is that prostatitis is a myoneuropathy disorder and I think there's something neurological about this like if our pain threshold is fucked up and nerve keeps sending pain signal even though there's no more infection or disease....we need to stop thinking about it and trying to forget it...easier said than done..

I keep hoping I'll get better and I think I will, as you will.

You are early in the game...so you are ahead.

email me if you wanna talks. Dont hesitate to ask me questions...

Chillysun

Get well!!!

[DMcU]

This is interesting, it just hit me now - doctors keep telling me this is all in my head .... and you say

My theory, and take it with a grain of salt, is that prostatitis is a myoneuropathy disorder and I think there's something neurological about this like if our pain threshold is fucked up and nerve keeps sending pain signal even though there's no more infection or disease....we need to stop thinking about it and trying to forget it...easier said than done "

Maybe there might be some truth in this to some extent in that it's our continuous negative thinking like waking up and waiting for the pain and looking to feel it that hastens what might have only been something small to a fully blown condition. I find that when I'm kept busy or doing things that change my routine I do better because my mind is on something else.

If this is true and I believe it's at least partly true because my instance of chronic prostatitis / chronic pelvic pain syndrome was probably started by falling through a roof and rotating my pelvis (i.e. something small) but it was definitely worsened hastily when the negative thinking began.

It would be very enlightening and encouraging to find out that this condition is simply a 'trick of the mind' so to speak, in that nothing physically would be wrong with us. But there are inflammations etc to explain in many cases and I'm not sure if we can trace this back to anxious and negative thinking. Interesting though.

Another person whose case was very much fuelled by anxiety and over-thinking is d_man. Him and I kept in touch a lot a while back and if you read his latest post he tells us that it was getting to grips with stopping thinking about the condition that was the biggest factor in his recovery.

[chewydog]

Chillysun: My pharmacist says you need to take both the Elavil and Flexeril together, they need each other to work somehow! I've been on them for 3 months now and it did bring me to the next level (80-90). Like you said, what have you got to lose! I now have a normal day, in fact it's becoming normal days, several in a row!

Cheers!!

Chewydog

[chillysun]

Thx Chewydog!!! Thx for your help!!
I'll keep you updated to tell you how I'm doing with Elavil... just started one week ago... it may takes as much as 3weeks-3months to work... right now I think it has already helps me out... I feel more calm... much less negative thinking for now... maybe it's because I have less pain or the other way around... I don't really know... tough to say... but I'm positive it's gonna help me. Not too many side effects right now... except a little sedation... I feel like myself and not like a zombie...

I have read a lot on chronic pain... and many pain syndrome are caused by lower pain threshold... like if the nervous system is more vigilant and takes non pain stimuli for pain... with medication, relaxation and physical activity I think there's hope to calm down the nervous system and elevate the pain threshold progressively (that's why it takes time and maybe why many guys get better with time). .. explain pain by David Buttler is a nice read... what is encouraging in a way is that, from what I've understand, brain keeps changing, like in in real time, forming new synapses every seconds... so I hope there's a way to shut down that fucking prostatitis hahaha... another interesting thing is that thoughts have the power the reactivate pain circuits ( like negative thinking, fear, stress). .. so I keep believing there's something neurological about this, but that doesn't mean it's all in our head... there's a physiological explication to explain that pain... but we don't understand very much about it...

Pleasure talking with you... don't feel alone and it's great

Chillysun

Best regards

[chewydog]

Hey Chilly, one side effect I had was I got bunged up!!!

I'm on daily fiber now, no issues!! Well worth the relief I got from these 2 drugs. Just thought I'd give you the heads up!

I sure hope it works for you like it does for me! I'm now planning again for the future!!!!

Chewy

[carld]

To avoid having to say much these days I just ask new people to read my signature to help get you started...This will help you if you are willing to put the time and effort...

Best

[mike7311]

Hi All, I thought that I will provide an update to all.

I went to a chronic pain clinic at Woman's College and had 3 nerve blocks in the pelvic bone region. Let me tell you all that it hurts. It’s not going to feel like a "pinch" as the Dr. said. After 15 mins all I felt was some numbness in my leg...no pain relief. On Monday I go for another pelvic x-ray and ultrasound on the testicles. I have also completed 3 pelvic floor adjustments. For a few hours after the pain/discomfort is better but comes right back. I’m going to another “pay” clinic this afternoon. They do prostate massage and analyze the prostate fluid. The Dr There can see some “inflammation” plus other signs of possible infection. Well I’m back there again today to see what they say after 10 days on Zithromax. So as I said in my other post I’m on even more drugs now.
Add – Zithromac 10 days
Anti-inflammatory rectal suppository (no effect)
Percocet 1 pill 4 times a day.

I wish I could control my stress. As it stands my marriage of 22 years is not going well. I get very depressed and negative. I withdrawal from my wife and children. I barely speak and my wife has had enough of that. Also my work is starting to question my effort/ quality etc adding for stress to my life. This condition deeply affects not just men, but their loved ones as well. I wish more research into this field could be done.
That’s the update for now. I’ll email again after these appts today.

[chillysun]

Hi Mike!! You're not alone with this... there's a lot of guys here that may helps you... I still have pain everyday, but I have just started Elavil and I still have lots of problem with my anxiety and catastrophising thinking that really get set in motion when I'm in pain... I really feel like I'm losing control sometimes... and that I'm going to lose everything I work for my whole life... still live alone and I'm starting residency in July with 70 freaking hours a week... I sometimes feel like I'm heading right to a wall at 160 miles per hour hahaha....I'd say I'm maybe 50% better since this all started... what depress me is that I can't fucking sit loool... but what is positive about this... it's that it changes your way of seeing life... I feel like maybe it has some positive after all... I sometimes just want to show the big finger and do what I wanna do... makes the most of life... I plan of maybe switching career... going voluntary simplicity... who knows I might be happier... I'll start dating again and see what it brings... and i'd say fuck off to all people who judge me because until they walk one day in my shoes they don't understand shit... sry if I sound angry..still working on letting this anger out... part of a long process I think... thx for listening

Chillysun.
Best.
You'll get better and many good things still to come in our life. I'm sure
keep me updated

[chewydog]

Hey, guy's I know things may look dim right now, but things will slowly get better! I just had an internal session with my PT and I've had "no" issues since then. Life's finally starting to come around, but let me tell you stress is a killer, you all have to lose the stress!

[mike7311]

its been a few weeks since I last posted and to date I have no good news. I can't even find a clinic that will assist me. The latest is the last ultrasound has found calcification in the prostate and perhaps this is causing issues. I go for a TRUS on June 28th that will determine size and position. All I can say is that I'm very, very depressed right now. Nothing seems to work even marginally and I now fear for my job and marriage. Going to see a shrink to see if she can provide any type of pain coping routines.

God Bless

Mike