Questions from a newbie.

[sam5935]

Hello all-

I'd like to give a brief run-down of my case history, then ask a few questions.

In February, I began having a slight ache in my right testicle. This had happened once before. I had been given some NSAID's and it went away. This time however, the NSAID didn't help. I was given a scrotal ultrasound and was told that I had a hydrocele and some blood in my scrotum, and was given Cipro for epididymitis. This cleared things up for a few days, then symptoms returned. I was then referred to a urologist who did a digital rectal exam and diagnosed me with prostatitis. I then tried 2 1/2 months of various anti-biotics, to no avail. I then went to a 2nd urologist who diagnosed me with chronic prostatitis / chronic pelvic pain syndrome and gave me Flomax, saying that basically it would "burn itself out" in time and go away.

My symptoms are as follows:

right testicular pain
reduced/split urine stream
urinary frequency
slight tingle in penis
lowered libido
low back pain
general pain in pelvis, thighs, most often in medial(inside) part of right
thigh.

When I'm having the urinary/frontal pain symptoms, sitting makes it worse. When I'm having the low back pain, standing makes it worse and almost kills me. Laying flat on my back makes it go away almost immediately.

It should be noted that the urinary symptoms have been bothering me for years, I just didn't realize it should be any other way. Other risk factors include:

1. Depression
2. I'm generally a very anxious person
3. 20 oz. of coffee per day
4. Very strenuous exercise for years
5. I love refined sugar
6. Had a groin injury several years ago that still nags at me.

One interesting thing is that when the urinary and frontal pain issues are there, there is no back pain and when the back pain is present, the frontal issues subsude. Lately, the low back pain has been severe.

Luckily, I am in San Francisco so seem to have some treatment options. So far, here is what I have decided to do:

1. Eliminate coffee
2. Greatly reduce sugar
3. Eliminate "impact" exercise such as running, jumping rope and replace it with yoga, swimming, and maybe continue a light upper body weight routine.
4. I have ordered "A headache in the Pelvis"
5. Physical therapy.

Here are my questions:

1. When I have it, my back pain is severe. Is this common? Is it common for symptoms to be so polarized(i.e. when having urinary symptoms, no back pain and vice versa)?
2. How do my initial treatment choices look?
3. Does this indeed often "burn itself out" and go away completely?
4. MOST IMPORTANT: Luckily, because of where I live, there seem to be several clinics at my disposal. I have contacted Dr. Weiss for an initial consult, but I've read on here that he may not be the best choice. It seems I have 4 choices

a. Dr. Weiss
b. Dr. Wise
c. Stanford clinic
d. Some other local PT that does pelvic floor therapy.

I am on Kaiser health insurance. However, the people at Dr. Weiss's clinic said they may be able to help me get Kaiser to pay for it as they have about 15 patients who have successfully gotten Kaiser to pay. If I can't, then it's out of pocket so I'd have to either go to a less expensive PT that does triggerpoint, pelvic floor therapy, or try to find a way to pay for a few sessions from one of the others, and get as much take-home info. as possible. ALL OTHER ISSUES BEING EQUAL, WHO SHOULD I GO SEE? IS THERE ANYONE I SHOULD AVOID?

5. Has anyone here had any luck getting their HMO or Kaiser to pay for this condition out-of-network? If so, what did you say?


THANK YOU SO MUCH FOR TAKING THE TIME TO READ THIS!!! I know it's long winded. Please give me any thoughts you have. I am at wits end and really feel like my life is ending. Most of my favorite things(travel,sex,dancing/working out) have been taken from me and I don't know where to turn. I am really fearful for my state of mind and need help. Thanks again!!

Sam5935

[webslave]

1. When I have it, my back pain is severe. Is this common? Is it common for symptoms to be so polarized(I.e. when having urinary symptoms, no back pain and vice versa)?

These symptoms are not unusual.

3. Does this indeed often "burn itself out" and go away completely?

No, you should take active steps to improve your condition. Neglect is not usually useful.

a. Dr. Weiss
b. Dr. Wise
c. Stanford clinic
d. Some other local PT that does pelvic floor therapy.

Given your location, you'd be crazy not to access David Wise and the Stanford group. That's easily your first choice, and whether your HMO pays or not should not stand in your way. Email David to ask about the HMO issue.

[sam5935]

Thanks for your reply. I will contact Dr. Wise. I am assuming however, that if I can't get my HMO to pay for it, it will be several thousand dollars just for initial treatment. If that's the case, it will be prohibitively expensive and I'll have to go another route. Hopefully I'll be able to get my HMO to cover it. either way, thanks for your input as to the best route to take!!

Sam5935

[CppsDad]

Sam,

I live near you. I went to see one of Dr. Wise's clinic PT's privately. He helped tremendously, and is very knowledgeable about the PT part of the condition. His name is Jeff Franceschi of Franceschi and Associates. They are up in Rohnert Park (about 30 minutes north of the city, and not far from Dr. Wise). If you don't end up going to Dr. Wise's clinic, I would at least schedule a consultation with Jeff Franceschi to have him evaluate your trigger points, and muscle tone.

Your symptoms and responses to various treatments is all typical, or at least, not atypical. Symptoms move, polarize, get worse one week, better the next. The latter change causes us to think something is making it better (a dietary change, a new antibiotic), but this is just the typical waxing and waning cycle.

It sounds like you've had some pelvic floor dysfunction for years, but only now symptoms are bad enough to make you take heed. My recommendation is to tackle this head on, and then you can spend the rest of your life not worrying about it. Letting it "burn out", and doing nothing, could possibly result in things being much worse a year from now. This is one of those "if I only knew then what I know now" moments, and take it from me, ignoring your symptoms and letting them go away on their own is a bad move. They might reduce a bit, but in the meantime some of the triggers that are causing them may get worse, undetected, and the next iteration of your chronic prostatitis / chronic pelvic pain syndrome could be even worse.

You have all the common personality traits for those of us with CPPS, and many of those traits will be stressed to the fullest if your chronic prostatitis / chronic pelvic pain syndrome problems get much worse. Anxiety and depression, for example, become much more severe when you have chronic pain or chronic symptoms of any kind. You don't want to end up in that spiral if you can help it.

So tackle this right now as Webslave suggests. You have one of the best tools for beating chronic prostatitis / chronic pelvic pain syndrome at your disposal. AHIP was a revelation for me. Fighting this with the SP costs very little long term, and is great for your overall health. When you look at things objectively, AHIP makes so much more sense - you don't have a sudden failing of your pelvic floor - you have a gradual build-up of trouble spots that results in confusing symptoms that go away and come back and change almost as quickly. It's all there before you, so just take it and run with it. Becoming an advocate for yourself will feel good at this point.

Read a lot on these forums, check out the success stories, and hopefully you'll find the answers you are looking for. I haven't diagnosed you (nor am I a doctor), so I can't say 100% you have CPPS. But I can say that you'd be foolish not to treat yourself with the SP while at the same time pursuing whatever low-success-rate options you want. At least that way you are hitting all options, and not leaving anything to chance.

Good luck!

Mike

[texas2006]

To mods like Mike (CPPSdad) who take time out from their lives, and their own struggles with CPPS, to write thoughtful, insightful responses to forum posters.

[CppsDad]

To mods like Mike (CPPSdad) who take time out from their lives, and their own struggles with CPPS, to write thoughtful, insightful responses to forum posters.

Today I went on a steam-train ride with my daughter and my 20 month old son. I remember two years ago going on that same ride, nearly in tears due to my pain, having trouble breathing due to anxiety, because my wife had to go out that day, and it was up to me to take care of my daughter as best I could. It was one of the hardest rides of my life. I stuck through it. Today, I enjoyed the ride like it was meant to be enjoyed, like I was wishing I could enjoy it two years ago. All I can say is that I wish the same experience for all of you, and it is no trouble to me to spend time giving words of encouragement to those of you who still need it. There are another dozen events just like the one above that were basically ruined for me years ago, and like a man on a mission, I live to get revenge on each one of them and erase the bad memories one at a time.

Mike

[scotsman]

Sounds like a great day out Mike

I played 9 holes of golf yesterday afternoon - without pain medication and almost entirely symptom free. The good days taste really sweet

Richard.

[robertpagen]

CPPS Dad
I can so relate to the before /after quality of your steam train story.

Same here, when I share time with my son I feel the same awareness of ENDURING the old days.

Be well, Robert

[GARYS]

That story just brought back one of my worst memories. I also took my daughter to a place where you drive around on a small train and see the animals. My wife went to work and when my daughter and I (she was only about a year old) got there I could barely even hold her. It was one of the worst days of my life!! Not only because I was in so much pain, but I wanted children so bad, and I finally had one and that's how both of us got to spend our time together. I guess looking back I have come a long way, thank GOD, but I always live with the fear that I could go back to feeling that way. Knock on wood. Do you ever lose this fear?

[CppsDad]

but I always live with the fear that I could go back to feeling that way

I don't lose the fear. But I live with the knowledge that I can beat it, because I've beaten it before. I do not fear I will be stuck with this the rest of my life, which was always the worst part of chronic prostatitis / chronic pelvic pain syndrome for me. Yes, I'm sure chronic prostatitis / chronic pelvic pain syndrome can ruin days for me still, but I won't catastrophize it any longer.

[sam5935]

Thanks to all of you who have taken the time to write. And yes, CPPSDad, it's great to get so much good information. I e-mailed Dr. Wise and will post something when I hear from him. Meanwhile I'll keep reading the posts. I have additional questions but think I'll wait unitl I receive and read AHIP so I don't ask unnecessary things.

Take care,
S-

[texas2006]

I've talked to a couple of guys that have been symptom free for years. They still are the same people they were born as, but they have changed their lives and thinking so the things that gave them symptoms in the first place, don't do it anymore. That's my goal. Get the muscle tissue stretched and relaxed so the tissue can heal, and learn to deal with stress/tension/anxiety better. Maybe I can skip the heart attacks that plague out family when a fella reaches the peak of 55 years or so.

Ryan

[CppsDad]

Maybe I can skip the heart attacks that plague out family when a fella reaches the peak of 55 years or so.

This is the hidden benefit of CPPS. Those of us that learn to conquer it have learned the affect stress, anxiety, and tension can all have on a body, not to mention the affect our thoughts have on our health. I haven't turned into a herbal-remedy doctor yet, but I think the Yoga-masters and deep meditative cultures got it right.

[CppsDad]

Meanwhile I'll keep reading the posts. I have additional questions but think I'll wait unitl I receive and read AHIP so I don't ask unnecessary things.

Sounds wise to me. Sorry about getting off topic in your post.

[LightningTree]

Hang in there. Your storyt sounds sooooo familiar to me. I've had the same story myself, so did my twin, and so do many people on this site. You can beat this.