What I learned about CPPS in two years...

[MS]

Well, after dealing with this horrible condition for over two years now, I have declared myself an "intermediate sufferer." I realize that many of you are in far worse pain than I, more educated than I, and that many of you have been suffering for a lot longer than I have. Anyway, I would like to share several anecdotes, perceptions, and personal experiences that I have learned, from which I hope at least one fellow sufferer can benefit. Please do not take my words as any type of medical advice. I'm just a patient, venting and sharing.

Background:

February 2001 -- Perfectly healthy, 35 year-old male in a very prestigious, physically and mentally demanding profession.

April 2003 - - Two years of hell: call it what you will -- Chronic Pelvic Pain Syndrome, Chronic Nonbacterial Prostatitis, Prostadynia, Recurring Cystitis, Levator Ani Sydrome, Myofacial Pain Syndrome. I got something bad inside me, and I have no idea what caused it. Trying to make ends meet by working from home.

What I have learned:

1. It Sucks. Live with it, but don't EVER give up. I have no idea what evil I did to get this suffering inside of me, but it's here. Experience it. Learn what makes it feel better and do it. Learn what makes it worse and stop. Constantly focusing on how much it's going to hurt next time you have to pee WILL make it even worse. Accept, but don't expect, that you will have pain. Easy to write, almost impossible to do.

2. Find the urologist, chronic pain specialist, or any other doctor, who you feel comfortable with, and who you believe will help you. My first urologist just kept calling in prescriptions for me -- didn't even let me finish my sentences. He told me there is nothing more he can do"¦ I finally found a great, compassionate urologist, who explains everything to me and listens to my complaints. I think we've finally found the "right" combination of medications and therapy to make my chronic prostatitis / chronic pelvic pain syndrome as tolerable as possible. Don't just go to same Doctor because you are "used to him."

3. Listen to your doctor -- But don't follow him/her blindly. If you are comfortable with your doctor, and he recommends an antibiotic -- take it all. If he prescribes you Cardura and you are uncertain, respectfully ask him why he is not prescribing Flomax or Hytrin. A good doctor will explain all his prescriptions to you. If you have severe pelvic floor spasms, ask him for a medication (e.g. Valium, Balclofen).

4. Learn. Read through the ucpps.men Website. There is so much knowledge, experiences, data, links, questions, answers here. Do a Google search with any terms you hear -- you don't even need a dictionary -- Google will usually correct "mispeled" words. Register with Medline/Pubmed. Look it up. When my treatment was at a plateau last year, an article about chronic prostatitis / chronic pelvic pain syndrome and Myofascial Pain caught my attention. I called one of the co-author's, who recommended a local physician to me for myofascial trigger point release treatment. I now see this physician regularly, and he has helped me tremendously.

5. ASK. If you don't understand, then ASK. Post a message. The Webmaster and moderators, and many fellow sufferers give great GENERAL advice. Listen to their advice then ask your doctor.

6. It's not in your head, so don't let it get in there. Don't listen to ANYONE who says your pain is psychosomatic, or that you are making too much of it. Unless they feel what you are feeling, they don't know. Don't expect anyone to really understand what you are going through. Everyone has different thresholds for pain/discomfort. Remember, the people who care for you most don't want to see you suffer! It is a natural social-psychological response for those who care for you to want to minimize their perception of your suffering, so while they may offer you sympathy, sometimes they too can't handle you being in pain.

7. No miracles. There may be a "magical" cure out there somewhere, but don't expect one single medication or treatment to solve everything all at once. Try Algonot and Quercetin. Try hot baths and broccoli. Try relaxation, yoga, physical therapy, and myofascial release therapy. Try Dr. Stoll's S-R techniques. Try Dr. Sarno's method ("The Mind-Body Connection"). All or none of these may help.

8. Don't ever give up.

May you pee pain free"¦
MS

[webslave]

That's a very good post, thanks! Yes, a positive mindset is best. If the men who visit here in a suicidal frame of mind come away with just this one message, then this site has performed its function.

[A50]

I have to agree. What a great post! I'm going to take your advice on your #2 sugggestion, and find me a new Urologist.

[ddarcher]

Excellent Post!!!

[Desperato]

Dear MS:

You made a wonderful readable post. It is perfect. I liked it a lot. You are a strong man, I would like to greet you for this.

Best regards,

Desp

[waynenf]

Thank you such much for such a well-detailed post! I've been newly diagnosed (maybe bacterial, maybe not) with CP, and just started a regimen of 60 days of Levaquin (500 mg) to see whether or not it helps my situation. I'm glad to hear that there are so many others out there suffering from the same symptoms I am. For months, I couldn't get to the bottom of my pain... had utrasounds, pelvic and abdominal CT scans, blood tests, and many doctor visits, only to be told I must have a musculoskeletal disorder. Finally, a urologist I visited thinking I was suffering from testicular cancer checked the prostate, did a fluid extraction, and is working on doing something to help me.

I'd hate to suffer with this chronic condition for the rest of my life... you've given me hope that something can be done!

- Wayne

[Baltimark]

I am a bit at a loss to understand why some here think that symptoms of prostadynia involve painful urination and such.

I have had chronic prostatitis / chronic pelvic pain syndrome for many years, on and off, and my main symptoms seem to be a feeling of "fullness" or a squeezing of the prostate that is uncomfortable. I have never had urinary problems, painful urination, or the need to constantly urinate (unless I have been drinking a lot of water). I have some burining and itching sensations in the upper rectum, and them a feeling like my prostate has expanded (this is all from some sort of internal inflammation).

I am convinced this is brought on my mental stress, and am surprised that many do not accept this idea. My bouts with chronic prostatitis / chronic pelvic pain syndrome seem to be triggered by certain (but certainly not all) anxiety related situations. For me, long term travel is a major trigger. However, sometimes I do not have any problems.

I have been to one very good urologist over the years; he has examined me at length and early on we tried all sorts of meds: antibiotics, urethral anesthetic pills, etc. all of which worked for a while and then quit. In recent years (the last 10) I have only seen him 3 times; each time my prostate was extremely healthy but the symptoms were there. It was he who suggested the symptoms were anxiety related.

I think everyone who has this particular condition should consider anxiety as an issue. Your body is reacting to something (as is mine) that we may not directly feel we are doing to it.

Your thoughts?

[scotsman]

I have had chronic prostatitis / chronic pelvic pain syndrome for many years, on and off, and my main symptoms seem to be a feeling of "fullness" or a squeezing of the prostate that is uncomfortable. I have never had urinary problems, painful urination, or the need to constantly urinate (unless I have been drinking a lot of water). I have some burining and itching sensations in the upper rectum, and them a feeling like my prostate has expanded (this is all from some sort of internal inflammation).

You're fortunate that your urinary symptoms have been relatively mild - for a lot of chronic prostatitis / chronic pelvic pain syndrome sufferers this isn't the case.

I think everyone who has this particular condition should consider anxiety as an issue. Your body is reacting to something (as is mine) that we may not directly feel we are doing to it.

Your thoughts?

Everyone agrees that stress/anxiety is a major factor of CPPS.

Richard.

[robertpagen]

two months of Levaquin is a staggering amount which you might want to reconsider, in the absence of compelling evidence that you have an infection.

[scoobysnacks]

Two months of levaquin destroyed my GI tract. In the aftermath, I had to fast for 8 days, then slowly begin eating foods that contained the same flora that are in your intestine, as well as supplement with them in pill form that you keep cold in the fridge. I had gas so bad I was sitting in class and actually pulling in very hard with my sphincter which I know exacerbated my condition.

If it doesn't start to work in 10 days it ain't gonna work. I was blind to that fact thinking the medicine couldn't get in, etc. and so forth. What crap!

Try it, but don't do 60 days at 500mg, death sentence to the GI.

I hope you see this message.

[Sleeper Service]

Four weeks of Cipro killed my GI tract. I couldn't crap and when I could it was brown soup.

Be sure this is an infection before you try that length of treatment.

[robertpagen]

The doctors love to say this BS that it is so difficult for antibiotics to penetrate the prostate, in order to justify these long durations.

It also must be considered that FQ's have a pernicious effect on the mental state of a significant subset of people taking them. There are documented cases of individuals experiencing anxiety and suicide after taking FQ's. There is even a modest warning on the inserts.