UCPPS - Prostatitis, Interstitial Cystitis Forum

Yes, I've read the book. It's excellent.

The book is good. But I still don't understand what I have to do to get healed. They give case histories and how people became aware of their thought processes and healed. I know Sarno has been discussed here and some people have found it useful. I said the same sentence to the psychiatrist who did hormonal work up last year. She said - read it over and over again and internalize it. Good sentence but I still don't know where to find hidden rage.

I have had a real interesting week. I wound up having to go to the emergency room because my regular uro wouldn't see me. He said he had too many patients to see and for me to go to the ER. Isn't it nice to know there are people with so much compassion? I had so much burning pain and I couldn't stand it any longer and it was coupled with that constant feeling of needing to pee. What a combo. I have a new uro and he wants me to have a urinary study done, which I'm not looking forward too, but maybe it will shed some light on what is going on with me.

My bowel movements have been all over the place; hard, soft, black, brown, little, thin, constipated, normal, loose, all hours of the day and night. I'm really a mess down there. Today I'm just cleaning myself out and preparing myself for tomorrow. I think it's just all the pelvic nerves that are out of control. My issue seems to be more the nerves than the muscles even though I understand they work in tandem.

I've been keeping myself from going nuts by taking Klonopin with Effexor daily. Sometimes I have to throw in half a Vicodin if I'm really not able to hack the feeling. For those of you who have never experienced the feeling of having to pee all the time even after you go, it is worse then hell. I can't get my uro to give me pain pills so I'm getting them from other people. I have to work, and I have to take pills to function at work than that's what I'm going to do.

I'll keep you posted.

Hi strobers,

I know you've been having a hard time of things, and I wish you the best with the colonoscopy. Everything will go fine, I'm sure. Best to get that all sorted out if you're having stools odd enough to alarm you. Mine have been constipated and hard for years, but that's the way it goes. IBS is such a wonderful quirk.

I'm sorry that the urologist dismissed you in the way that he did. Three months ago, the urologist who diagnosed me with chronic prostatitis / chronic pelvic pain syndrome did the same. The Elavil he gave me caused retention, and when I called about it, I was booted as his patient for having emotional issues. Not surprisingly, the retention left after I stopped the Elavil, though I did have a number of lingering "emotional issues" toward said uro. The good news is, there are ones out there that do give a care. I managed to find a very compassionate one, and while he couldn't fix me, he was able to support me in whatever next step I wanted to take - whether a referral to PT or to a neurologist.

I am coping with this thing like we all are. I'm going in for a urodynamic test on Thursday because for the last month I continue to have problems with clenching when I void. It seems that now I can only void when I press down. If I don't press down then I clench. It does not always work, but most of the time it does. Unfortunately, it seems that now whenever I urinate, I start to flare up again.

What is the most distressing thing is that for the last couple of weeks, it's hard to tell when I need to use the restroom. 95% of the time I always have this urge to void, but I never have any urgency, not even a little bit. When I woke up this morning I barely had the sensation of needing to void, but I knew I must have to. I went, and it seemed that I voided normally, but I didn't really have the urge to go.

Any idea of why this is happening and why I can't void normally? In the fourteen months I've had this, it's only in the last month that I have had the stated problem.

Strobers,

You have similar symptoms as I did in terms of burning and the sensation of having to pass urine even after emptying the bladder. This is the hell that CP/CPPS was for me for months on end....You get better by following the many protocols as you already know and mix time with it. Most importantly is to get control over the anxiety through cognitive work and deep relaxation daily moment to moment. That clenching you do is from anxiety that has not yet been resolved so you have dysfunction all over the place.

After you have the urodynamics....keep us posted.

My Last Month

Hello everyone,

Well, it has been an interesting month. I had been feeling about 90% better and then went out to eat and had what I thought was a safe sandwich, but after taking a couple of bites of it, I realized that the bread had a light sauce. I stopped eating it because I never take chances with my food, but about 20 afterwards I went into a bad flare that lasted about 8 days. I mean 8 really bad days. It ended about the middle of last week.

At this point I am back to my previous level of improvement. I switched my Klonopin to Valium, but only take it as needed. I average maybe 5 to 10 mgs a week. I haven't had to take a Vic for about two weeks.

My main issue right now is frequency, although when I'm sitting, even in my special chair, I feel that sense of smoldering and irritation deep inside my pelvic area. I just try to ignore it.

More things are making me flare these days in terms of food and supplements. The only supplements I can handle are cod liver oil, flax seed oil, and Vitamin E. Everything else is making me flare. In terms of food, I have sworn off eating out or going to someone's home to eat, unless I bring my own food. I was eating macrobiotic food, but I think the high sodium content of the sea veggies made me flare; and honestly I felt worse without the meat in my diet. I reintroduced chicken and fish in my diet and continuing to eat quinoa, millet, brown rice, chicken, sweet potatoes, squash and a few other things that I know are safe.

I have a telephone consult with Dr. Sherry Rogers in N.Y. in a couple of weeks. I had to send her my complete medical chart and a very comprehensive questionnaire, but I feel that her input will be valuable. She's one of the premier M.D.'s specializing in environmental medicine in the United States. I've read most of her books and have learned a lot of things. Hopefully, she will give me some suggestions.

I also have an appointment at the Whitaker Wellness Center in Newport Beach. I mentioned in a post a while back that I had done the cardio-ion panel and I found out that I was low in quite a few amino acids. Well, my nutritionist put me a protocol that included the amino acids that I was low in, but unfortunately they all made me flare. The B vitamins are particularly troublesome for me. She referred me to to Whitaker because they have successfully used minerals and vitamins via IV in mega doses to cure a number of problems. I'm hoping that they can also do the same thing with my amino acids. Something interesting to note, I am super low in L-Arginine. If I'm flaring and I take a handful of cashews and almonds, within 40 minutes my negative symptoms decrease substantially. Both of these nuts are high in L-arginine, so I believe that if I can give my body what it needs, it will help speed up the healing process.

Regarding my clenching, it comes and goes. Obviously it's worse when I'm stressed, but I found if I pee first thing in the morning while in the shower, that tends to set a positive tone the rest of the day in terms of the clenching. We all do what we have to do, right?

I ran out of money, so I'm no longer doing the infra-red sauna treatments, but I hope to resume them sometime in the future because I think they are very helpful.

At this point in my life I am functioning to the point that I can concentrate on my job and taking care of my responsibilities. Like many of you I worry that I won't be able to provide for my family, I will lose my house, etc. However, I try to minimize this thinking as much as possible because I know how our minds can work at destroying us.

I'm also keeping my life as simple as possible. I still take the train and bus to work, try to keep myself detached in the classroom and the BS at our school, and am paying down all my bills. I have managed to pay everything off except my car and of course my mortgage. Not having credit card debt really takes a weight off of my shoulders.

I am able to have an orgasm once a week, as long as I take a 5 mg Valium table beforehand. Usually I have no negative symptoms, although today it has kicked up my frequency somewhat for some reason. I remember when having an orgasm would put me in a three week flare, so in some ways I seemed to have healed. However, I won't rest until I'm normal.

The only other thing I'm doing Dr. Scott Brady's, "Pain Free for Life" program. It's based on Dr. John Starno's (The Mind/Body Connection) model of how and why pain develops. I do deep journaling every day and some visualization exercises. Since I got sick at the tail end of my Master's program, I believe that stress and suppressed anger/rage towards my professors and the whole educational program in general, set me up to a degree for getting sick. I try pretty much everything if it has some validity. I personally refuse to lay down and accept this thing. Granted, acceptance and not obsessing is part of solution, but that does not mean that we have to give up and wait for this thing to burn out.

I feel for Jay, Brett, and you other guys who continue to be really sick or have had relapses. I hope and pray that you guys get better. If I was given three wishes, my first one would be that every man, woman and child who suffers from any type of sickness or chronic pain be cured for life of their particular ailment.

Being chronically ill sucks.

Strobers, it was good to see your update. I'm sorry that you had a bad flare and are still dealing with the frequency issue.

My drug protocol is Flomax 2x a day, 5mg valium 2x a day, zoloft 75mg a day, and detrol 1x a day.

I had a Urodynamics test done a while ago and learned that my "I ABSOLUTELY NEED TO VOID" threshold was at about 250ccs which is a little low but both UROs seemed ok with it.

I've made some progress on weight loss but the depression and stress in my life put some of the weight back on.

I have felt in some ways that I'm having better days with my bladder, but this weekend was more symptomatic and I was absolutely in the throes of depression. I sort of think that some of the symptoms do get worse when I feel very depressed.

I do hope for your continued healing - I agree that the chronic illness stinks and it's absolutely miserable, but I applaud your perserverance. Unfortunately, mentally and emotionally I feel very fragile and don't feel that same sense of perserverance.

It sounds like you are continuing to find resources to help you and I think that you're inspiration to a lot of the guys on the board.

Wishing you all the best.

Strobers...

Good post with all the info...I think you are in the right direction. The fact that you are aware of what flares you and what doesn't is key to helping you heal. The fact that you can say that at times you feel 90% is a true sign of even better times...as long as you are dealing with your inner demons that fuel the fire that is CP/CPPS...

Elitynski,

I know you have been having a hard time with all of this...but it is of absolute importance to continue to deal with your emotional struggles and just know that the mind and body are truely connected.

Thanks for the encouragement - tomorrow I am checking out "wellness" centers which are like gyms except they have warm water therapy pools which are good for stretching and exercising. They also have nutritionists, trainers, mind-body classes.

2 of them are connected with local hospitals and one is a stand alone. So I'm going to go that direction.

I'm also working on getting on a better eating regimen. I will be seeing a food sensitivity specialist in December.

Little by little.

I hope everyone is having a good day today.

I had my appointment with the doctor at the Whitaker Clinic last week and she made various recommendations. We spoke for almost an hour. She asked good questions and actually listened to me. (how about that, a doctor who can actually LISTENS) She felt that based on the type of pain I have, the issue was more bladder related than anything else. Personally, I didn't quite know how to respond. She stated that if I had true prostatitis I would have a much different type of pain and I would feel significant pain when my prostate was checked. I've had fingers in my bum numerous times since my onset of symptoms and although I have felt uncomfortable, I have never felt what could be construed as pain. However, I feel that the smoldering/inflamed/raw/irritated feeling is pain, it's just not the kind of pain that one would typically get with prostatitis. I've been in a netherworld for months, so I didn't argue one way or another. I just know I have a problem. It's simple as that.

She felt that before we do anything in regards to supplementing my low minerals and amino acids we need to get the inflammation in my pelvic area in control. She prescribed a couple of supplements that she felt would not make me flare since they are taken by spray. However, after a day, I found myself flaring with them. There is one more thing she wants me to try supplement wise to see how I respond and then she stated she wants me to try a series of DMSO treatments IV. I use DMSO topically and it seems to help, so I'm open to trying it a different way. She states that she has used it on patients with diagnosed IC and it has worked wonders. I've read a lot of research on it and it seems like something to try. DMSO is used via catheter, and is the only FDA approved use for DMSO medically as far as I know, so it might be something that helps. We'll see.

I have my appointment with Dr. Rogers early November and I'm hoping she can offer her own take on things.

I'm going on vacation for about a month early next year, so I won't be doing anything serious before then from the standpoint of personal treatment. I want to go have some fun and that's not going to happen being strapped for cash because of paying for medical procedures that my insurance won't cover. I was in remission while I was on vacation last November, with the exception of a couple of days, so it will be interesting how my body reacts to not working, and getting away from all the stress. When I get back I'll do the DMSO treatments and see what happens. Until then, I've had this thing for 18 months so another couple of months isn't going to change anything.

What is scary is that a part of me has just given up. I don't care that I feel this way. I've been feeling about 80%, a decrease from last month, and it's been more problematic from the standpoint of the consistency of symptoms, but part of me does not care. I'm so tired of it, that I don't have a shit anymore. Does that make sense? Yet, the other part of me refuses to accept it and refuses to give up. I'm not sure who is stronger and who is going to eventually win out.

I'll keep you posted.

S

strobers wrote: I'm so tired of it, that I don't have a s**t anymore. Does that make sense? Yet, the other part of me refuses to accept it and refuses to give up. I'm not sure who is stronger and who is going to eventually win out.

I think one way to think about is, the part of you that doesn't give a sh*t any more is the part that accepts your condition. Once you quiet the other half down that's not accepting it, you can let go. The days that I feel the discomfort and frequency now, I just let go and say this is where I'm at right now. Because I have days I feel 100%. So I know I can get back to that state.

I really think IC, CP/CPPS PBS is all part of the same thing...Dysfunction from diet, stress and injury from the mind and body. Hang in there and keep us posted on the IC meeting.

Hey Carld, I hear what you are saying, but honestly I can't let the other half of me quiet down. If I just lay down, I will never be able to put forth the energy to battle this. I think it's important to accept it, the fact that I'm sick, but not to the point that I don't do anything further about it besides what I've been doing. I look at it like trying to solve a Rubik Cube, I just have to continue to twist things around, investigate, and try everything that seems feasible, until the right colors line up. Until I figure out the key to what ails me body and what it is trying to tell me. I can never let that part of me die or I will just stay a victim.

Even though I have days when I just want to forget the whole thing, just chuck it all into the garbage, I know that I can't and won't let it happen.

I have to believe that I am going to be the victor, not my sickness.

Hey Strobers,

Believe me, I wouldn't ever suggest to just let go and accept this. I don't think I made my point here. All I'm saying is that the acceptance is the first step to recovery and then charge hard in a relaxed way in fighting these demons we have ..the ego or whatever it is that I think brings this on. The hard charger in you will be the key to when you recover not if you recover. Like I have said before...you are on your way to it. I really believe this.