Woes of a Prostatitis Newbie

[superuse]

I must have read at least of 30-40 or more member stories on various boards stating specifically the squat leg press or lunges as their culprit on various boards. I think we even have a member here username "Hacksquat". Gives one an idea of how important and how much a part of ones identity it becomes to many. It seems almost 2/3 or more of men in pelvic pain have significant exercise histories, most from a bike, and other activities.

It took me over a year and a half exercise free to get things to (suddenly) calm 50% and then head down. Stretching seems to irritate maybe half of folks trying it, so no need to become stretch armstrong. Really, when I recall how much discomfort I was in continuing to heavily weightlift, and how similar it is to many here its kinda astonishing. It seems we are in a midst of an obesity epidemic and perhaps 75%+ of adults refuse to do **any** exercise consistently except at gunpoint.

20 years ago someone so big they couldn't get out of bed was a big deal. The "heavy person "exhibit at carnival sideshows years ago was relatively modest. Now, when the firefighters (and engineers) remove the side of an apartment building and use a front end loader (forklift not enough) to remove a 1200 lb guy from the 2nd floor it gets 10 seconds on the local news.

A person I used to know working at the local zoo thought it unususal years ago for a call to come in requesting heavy medical transport equipment and expertise used on rhinos and such to move a person. For a long time the calls increased to about 2/yr. It seems recently hospital equipment manufacturers may be catching up with demand.

Get well
--jjf

Update:

My Theory:
. All the time. I have discovered via my physical therapist that my right leg is harder to lift than my left and that I have some really tight, knotty, and painful fascia on my right hip flexor. I've had problems with my hip in cross country in high school in that exact same spot where the fascia is screwed up now. The last 4 months before I got "prostatitis" I was weightlifting and my PT thinks I strained my pelvic muscles pretty bad by squatting with bad form. I've also had a traumatic childhood with both of my parents being chronically I'll with hepatitis C and breast cancer. I also have allergies, all my brothers have allergies, Every member of my family and all those on my mom's side of the family have depression. So based on what I have read, I think I fall into the general type of person to get this illness.

Conclusion:
I think I have "pelvic myoneuropathy" and that I just need months of physical and psychotherapy to calm my knotted muscles/fascia and my terrified mind. After I get this pain calmed down, I'll be able move along at a brisker pace.

Something I must say though, life does seem kind of lame right now. My girlfriend and I have been in a long distance relationship ever since going to college. I think me stopping weightlifting, dropping out of college, being depressed, and being in constant pain with no end in sight is going to be the proverbial "straw that broke the camel's back". Plus the transmission in my car is as F'd up as my pelvis right now.

[sediment6]

Update:

I've been prescribed Elavil 25mg daily to be taken at night. I would like to say that it has helped me some. The testicular/urethral/perineal burning calms down when I take it. I've only been taking it for three days though and I hope that it will continue to make things better. One thing I must say about Elavil is that it really knocks you on your ass!

[guy97]

Elavil is not yet something that I have tried, but it gets a pretty good pedigree on here. Given that my gabalpentin seems to have done butt all, I may swap it for Elavil and see if I feel any improvement.

[sediment6]

Today I feel pretty good with the 25 mg Elavil that I took last night. So far I have been on it for three days. As a side note, for the last three days I had strep throat and I have been sleeping a lot so that may affect how I am feeling. The testicular and urethral burning has gone down noticeably, Although It is still there. Now its more like a tingly discomfort. I'm starting my job washing dishes soon and today I have physical therapy. My physical therapist was not trained by Dr. Wise, she was trained by Dr. Jerome Weiss from the pacific center for pelvic pain or something like that. Isn't that annoyingly similar? I feel like physical therapy hasn't started to help yet but that eventually it will.

Have you gone on to being pain free superuse?

[robertpagen]

Those Buddha Quotes are awesome!

Jerome Weiss knows his pelvic stuff, even if he is a money grasper. That puts him ahead of many other pelvic PTs, who dont know their stuff but are money graspers. That is based on my direct personal experience.

As it says in your banner that alcohol worsens your symptoms you should completely eliminate it. Anyone as down as you have indicated, understandably, you feel ought not to drink anyway.

Be Well,

Robert

[sediment6]

I finally ordered a headache in the pelvis. I'm going to start doing everything my PT tells me to do and start trying to get out of the apartment and live.

[sediment6]

Update as of now:

I am doing "ok" as of now. My primary symptoms now are *suprapubic pain, *testicular ache and tenderness, roaming abdominal pain, dysuria, urethral burning, and I uncommonly get this charlie horse sensation at the very tip of my tailbone (only during the worst "attacks").

I have noticed that the transition from a less painful calmed down state to a ramped up painful state with more intense and varied symptoms tends to happen after 6pm. Its almost like my body decides to "turn on", like the nerves decide to go crazy and then the pain gets so bad that I can't sleep. From what I gather it is common and this phenomenon is called a flare up. Is this the dreaded mast cell degranulation that I have read about? The nervous system deciding to turn on the pain that produces all the familiar calling cards.

Developments:
I have noticed lately two new things. First, whenever I have a bowel movement coming on I get a painful constellation of cramps in my pelvic/abdominal area that pretty much makes me stop whatever I am doing and go to the bathroom. Bowel movements generally are painful for me. Second, I have noticed that the post ejaculatory pain has pretty much gone away, although if I can "feel my jeans" then I think it may set me off sometimes.

The "feel my jeans" phenomenon:
I have noticed that If I'm having a good period of time, I notice the sensation of jeans on my thighs. When I'm in pain, the sensation of feeling my jeans is overloaded by the pelvic pain and gets outcompeted. When I'm doing well, I notice the feeling of the fabric of my clothing on my skin, and during these times I feel like I can go back to doing what I used to do. Slamming my girlfriend, listening to cheesy rap music while weightlifting, binge drinking, all to be repeated every week. However me and the universe have had a "conversation" about that lifestyle, and it is still an ongoing conversation. It would be stupid to go back to that stuff. Although my girlfriend has since dumped me, of all the things that are different between now and before, I miss weightlifting the most. I miss the buzz, I miss the sense of accomplishment. At this point I will have to direct all my type A histrionic personality energy towards school. My dysfunctional pelvis will not allow me to rock n roll like a wild animal.

I have learned tremendously from my suffering with this condition, whatever it actually is. I said this before but I feel like I have been taught compassion for people that I did not have nearly to the extent before as I do now. There's a lot of sick people out there, a lot of sad sick people. I've decided I'm changing my major from chemistry to biochemistry and that I want to work in the biotech field. I think that biotechnology holds the greatest promise for helping people with this condition, and many other terrible conditions out there.

The pain is so damn subjective for me, I think one of the most difficult things for me to quantify is how I'm doing to others. They ask if I'm better, and I am unable to tell them. I can say that I'm better than yesterday night when I stayed up all night because of the burning, I can say that my balls started to burn a few hours back etc, but I can't graph it.

One thing I will say is that I'm doing 50% better because psychologically I have made peace with having this condition. I am not less of a man, I am not ruined, I am not a loser. I can do everything I want to do with my life still, nothing has changed. I just have pain that I didn't have before. Yea it has "subtracted" from things, but it hasn't made my life unlivable or pointless. In fact, it has empowered me to take shit seriously. A major trigger for my depressed thoughts is when I see all the hot girls around campus. When I see them, I feel like I'm not "good" enough for them. I get these recurrent, warped, non helpful thoughts of inadequacy. That's all baloney I've come to realize. The pain would have to get a lot worse before it starts to actually inhibit me. The reason why I dropped out of school was because I was depressed because of the pain, it was because I felt inadequate and lost the desire or motivation to study. Luckily I resigned before it impacted my grades or the money my parents paid for tuition. next spring, I am going back to university. I'm going to conquer biochemistry as swiftly as the pain I feel once conquered me.

[webslave]

Good decision to go back, and the attitude to girls is more constructive too.

• Discomfort on bowel filling is probably related to pressure on pelvic floor nerves and muscles
• Increase in symptoms as day wears on is typical

[sediment6]

Update:

Well I have to say that at this point in time, despite my skepticism, starting smoking cigarettes regularly, being dumped by my girlfriend of 4 years, and totally abstaining from the stretches prescribed to me by my physical therapist; that is to say, completely in spite of myself and the unremarkable effort I have put into my recovery. I have gotten significantly better.

Pretty much the only thing good that I have done for myself is that I have stopped worrying about my condition almost entirely. I'm extremely depressed about it, but the key I think is that I'm not worrying about it; two very different emotions.I feel like I don't really care anymore and that as a result the pain has gotten a lot better. Now I will still readily tell anyone that the pain is disturbing and has completely destroyed my life, but it has gotten better as of this last week and a half; pretty much ever since my physical therapist had a patient cancel an appointment and she spent extra time with me doing internal release. When my physical therapist worked internally the other day it burned like unholy hell. I got this fiery urethral/ suprapubic referral that is somewhere in the 8 to 9 on the pain scale and I think she's releasing it successfully. One of the things she said when I first met her is that right now I have a variety of symptoms and what she's going to try to do first is to narrow the symptoms down to a smaller variety. To narrow the symptoms down to the core group of perpetrating muscles and I think her prediction is coming true.

As a sidenote, I have recently been reading Dr. Shoskes book and I am considering scheduling an appointment to see him if possible. My birthdays coming up and by that time, I will have officially gone chronic. Yay for life! However I won't get too attached to that label. If things keep progressing at the rate they are I think I'll be pain free soon. Things are certainly looking bright, but I'm not going to do backflips yet.

Also one last thing, this forum is F-ing awesome, do yall take donations?

[webslave]

donate/donate.html

Thanks

[sediment6]

My birthday is coming up a few days after next week and by that time I will have had What I think is Chronic Pelvic Pain Syndrome for 3 months and 19 days. I have noticed a modest improvement over the last three months in terms of external trigger points in the abdominal area. This is corroborated by my physical therapist who says that I have improved. I have also noticed that suprapubic pain has gone down a good deal as well. Other than that my condition and all the grief and misery that I has caused remains in full effect. It is hard to be encouraged by modest improvement if at the end of the day you're still down in the dumps. I see little difference in terms of how happy I am between a modest improvement and no improvement. If someone were to tell me as a child that right before I turned twenty my quality of life would be annihilated by a rare but all consuming disease called chronic pelvic pain syndrome I don't know what I would've done.

For the last three months I have experienced these symptoms

• Testicular pain, usually burning/aching in the right and less in the left.
• Post ejaculatory pain. It feels like there is something caustic in my semen that burns my urethra for hours after ejaculation.
• Groin pain, a new recent symptom.
• Muscle spasm in the pelvic floor, felt in the perineum. Muscle spasm in the suprapubic part of the rectus abdominis. Muscle spasm in the tailbone.
• Rectal and urethral burning.
• Fatigue. I get out of breath from simply walking and am very tired during the day.
• A profound and far reaching depression.
• Difficulty concentrating
• Horrendous muscle spasm and cramping associated with the onset of a bowel movement. I know that I have to defecate when I get debilitating muscle cramps about ten minutes beforehand. If I am in the middle of something everything stops, I have to bend my torso forward and walk slowly to the nearest restroom.
• I have no libido.
• I have great difficulty going to bed at a regular time of night. I don't feel very well rested when I get up the next day no matter how much sleep I get.

My parents think that soon I'll be better enough to go back to school. This condition has showed no sign of letting up. I get tired just walking. I feel like shit all the time every day. My condition does not allow me to sleep either long enough, well enough, or regularly enough to function the way society expects me to function. I am not even half the person that I used to be and I don't think I'll be able to pull off going to school even with an enormous effort on my part.

So cheers to the good years of youth, the "prime" of my life.

[webslave]

You have a nasty variant of CP/CPPS, the one that comes with CFS. That's what I had too. You're also catastrophising, which is easy to do in the circumstances.

Take a deep breath, and calm down. Even if this slices a few years out of your life, it's no biggy. You can catch up later. The CFS element means you really do have to try to unwind and take life at a slower pace for a while. The causes of CFS are controversial, but one of the best explanations was given to me by a doc who said that when you become profoundly stressed, the immune system revs up and can't go back to the idling state (to use an engine analogy). viewtopic.php?p=36182#p36182

[sediment6]

Medical science needs to find the etiologies of CPPS. Theres more at work in it than just strained muscles. We need a cure.

[sediment6]

I had to go to the hospital for pain for the 4th time in the last 3.5 months today. At this point I think I'm gonna go for pain management. I can't sleep unless I'm exhausted, I can't eat unless I'm starving, I don't think I'll be any use at the physical therapy office until I get this pain under control because I can't function in society just as is.

[sediment6]

Hello everybody,

Yes I still have chronic prostatitis / chronic pelvic pain syndrome (what a surprise ). However I think at this point I am on a waning phase of it. I still have significant amounts of pain, and it is difficult for me to characterize the general pattern. It happens all the time, the urethral burning sensation just comes and goes and with it, my sense of comfort in life. I have pretty much gotten used to living life with constant pain and discomfort. This pain is miserable and makes me question why people are born to suffer. One thing I will not tolerate is when people tell me that chronic prostatitis / chronic pelvic pain syndrome is my fault because I am too tense. Tension is a personality trait, its something you learn as a child or teenager, and the vast majority of the time its unconscious. Nobody would ever wish upon themselves CPPS. I had a physicians assistant basically blame me for it once. All I can say is fuck that lady. I got another bottle of vicodin and I have been taking it about 1 or 2 a day and it helps a lot. I also went back to weightlifting simply because I can no longer stand doing nothing in the vain hope of improving this incurable disease and quite frankly I would rather die than stop working out. Plus I'm not doing crunches and I'm not doing squats or dead-lifts. I think the "worst" exercise I do is the leg press, but when I do it I always breath and I never clench. I still take quercetin now and then, I think quercetin is like most supplements in that it helps a little but basically doesn't change the lot of your life. I stopped taking Elavil because it doesn't work, and because I hate my urologist so much that I want to eradicate all traces of his influence on my life. I've been playing guitar a lot, in fact I just picked it up 2 weeks ago. I've also been playing my piano a bunch too with Handel being the latest composer that I've been studying. I'm applying for a job at IHOP which I hope works out. As far recent developments in my life? I've been smoking a lot of weed lately. Ghanja doesn't really help the pain, it kinda soothes it a little bit, like it'll reduce the pain by a maximum of 5%. Overall its like a supplement, it helps a little, but it doesn't change the lot of your life. I do like weed because it makes me more interested in music, which causes me to play more music, and then because I play more music I'm more relaxed which leads to less overall pain. I wouldn't really recommend it for chronic prostatitis / chronic pelvic pain syndrome though, I would just recommend it if you're trying to get high :happy:

Man it sucks being expected to perform sexually with this disease. I just never feel normal down there, everything is either sore, actively burning, actively aching, or lacking enthusiasm. This girl was talking to me about having sex with me the other day and she was joking with me about various sexual things. Funny how life is awkward sometimes. You ever have a conversation with someone, and have a parallel conversation at the same time with yourself in your mind? I find that when I have those parallel conversations I just end up being torn in half and both conversations just end up being unfinished or unsatisfying. All the while that I was having that conversation with her, in the back of my mind was this dismay about whether or not I would enjoy having sex with her, would I be "allowed" by my pain to enjoy having sex with her? Would I be lucky that day and not be in that much pain? There is something about sexual insecurity and sexual dysfunction that I think is particularly disturbing, and serves to set it apart from other fears. I think one of the reasons I started weightlifting is because I feel so inadequate as a man. My therapist told me that living through suffering is what makes you a man, not having enjoyable sex. I never did know what to make of that statement.

http://www.youtube.com/watch?v=3On4rAJdeKg