My story...What can I do?

[User-CPPS]

Hello there,

I am 27 and I am suffering from chronic prostatitis / chronic pelvic pain syndrome for 5 years now. It is just since last year that I know what I got, since before all urologists said that I am healthy after examination! So everybody said it was psychosomatic!

Since I found this homepage and heard about the then called "Stanford/Wise-Anderson Protocol" I found a description of my pain that perfectly fit my symptoms!

I have to say, that I suffer from OCD and always had fear that something would harm my genitals, so this all makes sense, that it is a muscular problem and my pelvic muscles just need relief from the tension.

I tried Tamsulosin (alpha-blocker), it somehow relieves my pain, but it also makes me soo dizzy and sleepy that I get depressed and cannot work or do anything besides sleeping and yawning! So I have to quit it!

Besides Prozac I take Calcium, Magnesium and Omega 3 fish oil (about 6 grams a day).

I am ready to do anything to get rid of my pelvic pain, sitting e.g. is horrible, it is like one of my testicles is squeezed all the time and many other pain symptoms.

I am afraid of quitting Tamsulosin, but living a life disabled because of sleepiness is no alternative either!

So, my research taught me these options:

1. Go to California and participate in the Wise-Anderson Protocol. Should be expensive, but if that helps, I need to go this way!

2. Visit Dr Pohl (Psychologist) in Munich, since you pay her each hour, and if you see any improvement, I could continue!

3.Osteopathy...can it help me?

What I dislike is, that these people who will work with my triggerpoints are no medical doctors, and because of my OCD I am fearful that they would harm my body.

................

other options would include other medication! (Before Tamsulosin I tried Pregambilin and Gabapentin with no success!)

I tried to keep my story short but with enough information.

I no I will not get any medical advise here, but maybe you still can give me some helpful thoughts!

My aim is to be a happy member of society that is not disabled and can achieve the same goals than other people who set these goals!

Thank you very much in advance!

[carld]

1. Go to California and participate in the Wise-Anderson Protocol. Should be expensive, but if that helps, I need to go this way!

Your best option if you can afford it

2. Visit Dr Pohl (Psychologist) in Munich, since you pay her each hour, and if you see any improvement, I could continue!

cognitive therapy is a must

What I dislike is, that these people who will work with my triggerpoints are no medical doctors, and because of my OCD I am fearful that they would harm my body.

Most doctor for our disorder are useless anyway...Other than prescribing the meds we can use to help us.

Please read my starter list...
Best

[Jay]

What I dislike is, that these people who will work with my triggerpoints are no medical doctors, and because of my OCD I am fearful that they would harm my body.

Hi there,

Welcome to the boards! Carl has already said what I would've, but I wanted to touch briefly upon the above quoted concern of yours.

I can certainly understand the fear of being harmed. However, physical therapists (at least, in the United States) must be trained and licensed in order to practice. It's not as though someone can just decide to buy an anatomy textbook and start working.

It's possible that a physical therapist could harm you, but the same potential is there with a MD. I would argue that many PTs are more familiar with the structure of the human body. Either way, I wouldn't allow this fear to hold you back from doing whatever you feel needs to be done. It's worth noting that they teach you self-PT at the Wise-Anderson clinic, if that wasn't clear, so you'd have the ability to be your own therapist once you've returned from the clinic.

[snoopy]

What exactly are your symptoms?

Snoop

[User-CPPS]

Hello,

My symptoms:

• pain is mostly in the right half of the body -- testicles, glans (tip) of penis, buttock, sometimes adductor, just the whole area of the pelvis, depending on how I sit and the muscles are flexing. You can describe the pain as squeezing!
• Sitting makes it worse, especially if the chair is very hard!
• Before alphablockers, I sometimes felt that I have to go to the bathroom very soon after urinating (great urge, but little urine). Also, after ejaculation I would have severe pain and discomfort, as if something was inflamed or hurt inside, and I just could not relax the tension inside my body (it was horrible). Tamsulosin just makes it much better!
• While sitting, it is like someone is kicking or squeezing my genital area all the time, it is just a constant pain taking away part of my concentration. Sitting is just not relaxing any more! Of course, there are times, when I focus on my pain like now writing this text, and times where I "forget" the pain (with big help of the alpha blockers!). Muscles and tissues are constantly tensed, sometimes more, sometimes less!

I do a lactose and gluten-free diet! No alcohol and tobacco! I normally just eat this:

• chicken breast or sardines
• white parboiled rice or potatoes
• vegetables (including onions, tomatoes)
• lemon juice, paprika, salt and pepper as flavour
• bananas and berries
• pure water
• lactose free cow milk
• cocoa powder without sugar (contains small amounts of caffeine, right?)

Medications

• I take Tamsulosin, but I am thinking of switching to alfuzosin, since I hate retrograde ejaculation which happens sometimes! Now I take Tamsulosin in the evening and the side effects of being sleepy got much better in the daytime! Hope Alfuzosin does not have worse side effects!
• I started to use Pollenextract (Pollstimol)!
• Multivitamin, Gingko, Calcium, Magnesium and Omega 3 fishoil (about 6 grams a day)
• Fluoxetin 60mg
• Modafinil one tablet in the morning (just started, because of my life destroying daytime sleepiness)
• I am stopping taking Lyrica (75mg at highest dosage), since I think it did not help in the last two years, and the side effects are too strong. now I don#t take it any longer!
• I am trying Levitra (from my urologist)! Since my depression and OCD got worse and I started taking medication, my sex drive became very low and so my erections! With Levitra I had positive effects in my self tests (I am single) and also my pains were MUCH better! But I have to be careful to have a time difference with taking alpha blockers of approx. 4 hours, so that is unnerving!

Soon I will meet a specialist for trigger point therapy who said he had helped other people with pelvic pain before. I will start reading A HEADACHE IN THE PELVIS tomorrow!

In my dorm I only have a shower, and cannot do warm baths! :-(
I will see if I can join Yoga somewhere!

I am doing behavior therapy along my medication therapy!

As I said, I may have to try taking Alfuzosin, to get normal ejaculation again! But still, I hate that I have to take care not to take it with Levitra (which is very expensive, by the way).

I read here, that tomatoes citrus fruit are not good! I use mashed tomatoes and lemon juice for my rice!

Do I have to try any accredited quercetin product or Quercetin, or should I just use pure quercetin? Somehow I fear pure plant medication!

Maybe I should try Elavil...hope it does not make me sleepy

One thing:
Physical exercise is very important for my mental health. I started again working out in the gym, using free weights, but I am not overdoing it!!! Compared to other guys I am very weak and tend to become fat because of my genes! So I am on this strict diet and I have to do exercise to brighten up my mood and stay healthy. Now people in the internet scare me of doing so, because it can flare up symptoms. I do squats with 15kg on each side, because I am a beginner on free weights, I train my abs and adductors and abductors! I mention these points because some think they hurt their pelvis muscles with these exercises! On the other side, if I stay unfit like now, having no lean and good body, staying single will make me mentally sick! Because of my mental issues, I never had a girlfriend or sex! Now my mental state is near normal, in some cases even better than "normal" people because of my experience, but just sitting on my butt and gain weight and not exercising may harm my mood! I hope there is an alternative way, with trigger point therapy on one side, but light and short exercise on the other side! (no bodybuilding, just have a lean and strong body, not going for the ultimate painful muscle gaining process!) Or should I leave all weight training away and just do cardio, and things like yoga and pilates...?

Sorry for my long text! I need to find a solution for this, to save my life!

[Jay]

Hi there,

Firstly, I wanted to address your lack of a tub. That's understandable. The reason tubs are so often suggested is because they're much better at saturating the muscles with heat. If showers don't help enough, you could try buying a sitz bath from your local medical supply store. It's like a little tub you just sit on (some can be inserted on top of your toilet) and it submerges your perineal area in hot water which flows from a bag.

My personal opinion is that weightlifting is bad news until people have their condition under control. It just braces the pelvis and causes more tension. The best types of exercise for CPPSers, in my opinion, are swimming and walking. They'll keep you healthy while having minimal negative impact. In fact, many sufferers find some relief in a stroll around the neighborhood!

You won't be a muscled Adonis, but that shouldn't be high on your priority list right now. Neither should finding a girlfriend, I think. Get well and then worry about all of that other stuff. I'm perfectly happy living the celibate life my condition has led me to choose, and remaining true to that until I recover certainly isn't going to drive me mad. Sex is important, but there's no shortage of other things to live for.

There's no reason to, as you say, sit on your butt and do nothing. You can do stuff, and it's great that you want to, but you just need to be mindful of your limitations. Heck, even as mostly bedridden as I am, I still grab my cane and go places. Did a lot of painting last week!

Let us know how things go with your visit to the therapist!

[webslave]

paprica. cow milk

I found paprika goosed my symptoms. Not sure why, since I could tolerate Tabasco sauce... must be something about Paprika. Could be the fact that it is smoked during preparation (smoked salmon caused some problems for me too).

Milk (incl cheese) was a no-no for me. Causes sinusitis for me, and used to cause prostate pain, perhaps bec. it promotes mucus secretion. Milk allergy is very common. Milk contains cow pus cells and hormones ... not the best food.
http://www.milksucks.com/pus.asp

Since my depression and OCD got worse

OCD, huh? Figures. You need to think about controlling the mental aspects of all this. Read the Wise book. Unfortunately, the people with the most anxious dispositions (and OCD is an anxiety-spectrum disorder) have the most difficulty overcoming CP/CPPS. This is where you will have to do the most work, all foods and medications aside.

I read here, that tomatoes citrus fruit are not good! I use mashed tomatoes and lemon juice for my rice!

Tomatoes, lemon juice ... hmmm, too much acid. Lemon juice also full of preservative if not fresh.

Do I have to try any accredited quercetin product or Quercetin, or should I just use pure quercetin? Somehow I fear pure plant medication!

Get the free bottle any accredited quercetin product asap.

About exercising: don't overdo it. Take long walks (with a companion if you can find one!), use light weights, go for high reps rather than mass building. Yoga is fine.

[User-CPPS]

Hi there,

I started my PT and I hope this will help me! There seem to be dozens of TrPts in my pelvis area, mostly in my right body half!

Now I have quit eating gluten, dairy and fruit (fructose).

I eat sardines every day, 2 times chicken breast a week (my brand contains a bit lactose ), one cup of parboiled rice (sometimes less), plenty of zucchini, onions and olives steamed with a bit olive oil extra virgin.

I will stick with tomatoes and paprika though, just need some flavour for the rice!
Tasty food is also important for your mental health...what should I do...

I just drink spring water. Sometime I drink cocoa powder with water and glucose.

Of course, if there is some reason, like being with other people and I cannot perform this diet, I would eat other food like pizza etc.

--------------------------------------------------------------------------------------------------------------------------------

My PT told me, just to do walking and if I need to, do "upper body" strength exercises!
To be honest, I am quite fearful of doing something wrong! Maybe I should quit free weights and train on machines again, so there will not be any pressure on my pelvic at all times!

Do you know this ab exercise:?
you stand and lean on a ball, grip your hands and elbows, and then you pull your knees upward. Is this pelvic friendly?

...............................................................................................

I have thought, that maybe I should quit my gym membership and go to a yoga school, learning hatha yoga. And also do regular relaxation classes...
There must be some kind of exercise that I can perform in the future that can keep my lean, strong and healthy without stressing my pelvic...

[webslave]

Given your OCD and TrPts, you really should go to Stanford. You've said you can afford it, so do it. This food stuff is tinkering round the edges for you.

[User-CPPS]

Stanford must wait until I am done with my school, unfortunately!
I just cannot afford it right now, after I checked the expenses!

I am doing Triggerpoint Release with a PT, take alphablockers, and will start courses for Hatha Yoga and Progressive Muscle Relaxation in some weeks!

For Physical Exercise: I still have a gym membership. I go walking on the treadmill for 30minutes, and I have quit all kind of ab exercises! (Ok, I do not need a 6pack, just a lean belly)

Ok, use light weights! But can anybody tell me, if I should use machines or free weights for my upper body?
I really need to tone my breast!
And I need stronger looking arms! My lower body is naturally strong, that is why I may have so many triggerpoints in that area, since the muscles are very tensed there. It was the lower body I like to train most before I heard it was bad for me!
As I may have mentioned before, I am Single for a long time, and I need to look attractive to women! Feel very disabled now, no jogging, just light weights, no cycling...

Thank you for your support!

[carld]

Reading this post is telling me you are into what your body looks like and not how it feels...get that out of your head and focus on the healing of this condition. In a few years you can go back to a more progressive work out.

Best

[snoopy]

Interesting, your symptoms parallel my mine pretty closely. Is is a constant thing aside from some activities making it worse. Walking and exercise don't flare you up? I am pretty anxious but not necessarily OCD like washing and checking and having routines and all that. Hope you're feeling better now....

Snoop

[User-CPPS]

No, I am focussing at healing! I do not exercise at all for months, besides walking! It is just that if there is any workout that could tone me without harming me I wanna do this!

My anxiety is still there, but I always try to controll it! My anxiety is that somehow my genitals could get harmed by someone or something!

Thanks to Fluoxetine I am practically OCD-free!

If we don't exercise at all, we will soon get other health issues in the future!

[carld]

Walking

power yoga 3 times a week 1.5 hours a session

light weights

no sit ups...but leg lifts for core strength with stretching the abs after with cobra stretching...

stair master is fantastic...low impact great cardio and a belly fat burner I have been told...

steam room when done with light stretching

200mg a day of L THEANINE supplement for anxiety control...and a way you go...

http://en.wikipedia.org/wiki/Theanine

Best

[tamdc]

It's been said many times before, but treating chronic prostatitis / chronic pelvic pain syndrome is a slow process. I get the impression from your posts that you are anxious to do something (even multiple things) to fix your problem. What you need to do is calm down and let your body heal. Webslave is right about the food -- that's hardly your main problem.

One thing that helped me a lot was the moment-to-moment relaxation as described in HITP. Give that a shot for several weeks and see how your symptoms do. It can be difficult at first, but once you get the hang of it, you'll realize how tense you've been. If I had to guess, I would say it's not necessarily your exercise that's hurting you so much at this point, but your constant tension and high-strung personality. Again, calm down and let things settle down.