Need advice...

[SickofCP]

Just thought I'd ask for some advice.

Since my last post, where I felt 90% better, I flared. This seems to be my pattern. I go through a pattern where I feel a gradual improvement to a point, and then flare up again. Probably sounds familiar to most of you.

I'm going to see my uro next week and need some advice as to what I should be asking or suggesting as my next course of action.

My first few appointments were spaced apart by 6 weeks, but last time he extended my visits to once every 3 months. I've been on Xatral since January, and although I think it has helped to some extent, in combination with Quercetin, I'm getting frustrated every time I get a setback.

At the beginning I was on antibiotics, which failed (levaquin helped the most, but gave me pain in my knees like you wouldn't believe, so I had to stop taking it - flared the next day). Then, as mentioned, I've been on Xatral.

What concerns me is that the only test I've had is a rectal exam on my very first visit. I feel that we need to be more proactive at this point. I was diagnosed with Prostatitis, but really don't know whether it's chronic prostatitis / chronic pelvic pain syndrome or IC, etc. etc. Or if that even matters given some of the recent discussions on Muscle Spasm.

So basically, what do you think I should be asking my uro to do for me? I'm getting tired of going in to see him for my 5 minute visit, and not getting much out of it.

[MS]

What are your symptoms during your flare-ups (e.g. frequncy/spasms/pain)?

Did you ever complete any antibiotics, in place of the Levaquin?

You are payng the Dr. for treatment (or, at least YOUR insurance is). Tell him you want your symptoms treated! Read the treatments page on https://ucpps.men and check other websites on CP/CPPS/IC. Ask the Uro for medication and/or physical therapy to treat the symptoms. For example, If you have pelvic floor spasms, ask his opinion on physical therapy or a muscle relaxor. If you have frequency, perhaps Detrol. Ask him to explain his decisions. It's his job. Be informed. Just my advice...

Please keep us informed of your progress.

MS

[SickofCP]

What are your symptoms during your flare-ups (e.g. frequncy/spasms/pain)?

My main symptom is pain and discomfort towards the tip of the penis. I also have muscle spasms in the perineum area (I guess this would be called pelvic floor spasms?). At times the perineum is very uncomfortable also. My pain is at its worst after urination. I have not had a problem with frequency for the most part.

Did you ever complete any antibiotics, in place of the Levaquin?

I completed Keflax and another antibiotic (sorry, can't remember the name), and they did not seem to help with any degree of significance.

I like the idea of asking for physical therapy. Any other suggestions? What about things I should be tested for?

Thank you for the advice.

[MS]

also have muscle spasms in the perineum area (I guess this would be called pelvic floor spasms?).

Spasms are the single-most uncomfortable symptom (of many) in my personal situation. Again, a physical therapist, specializing in pelvic pain may help with biofeedback and stretching. a lot of people recommend sitz baths. Again, I personally would tell your Dr. about the pain and spasms and insist on treatment of your specific symptoms.

My pain is at its worst after urination

Have you tried Prelief and avoided spicy foods/caffeine/acidic foods?

What about things I should be tested for?

I think a Physician should answer this. It is my understanding that urinalysis and digital rectal exam can rule out a lot. In my particular case, I didn't have a cysto for over a year after onset of symptoms.

MS

[SickofCP]

Have you tried Prelief and avoided spicy foods/caffeine/acidic foods?

I've been avoiding spicy foods/caffeine/acidic foods & drinks, although I have not tried Prelief. I think I should.

Thanks for the help, I really do appreciate it

Hope everyone out there is coping.

[SickofCP]

Saw my uro today. He suggested accupuncture, so I suggested physical therapy instead. He agreed and is going to find a therapist for me who specializes in the area.

I've seen a lot of discussions here recently on muscle spasms, but does anyone have an idea on how successful treatment is?

I also now have a cysto scheduled. I realize he'll likely find nothing, but I don't see the harm in looking.

[MS]

I've seen a lot of discussions here recently on muscle spasms, but does anyone have an idea on how successful treatment is?

Yes, from my personal experience, PT with biofeedback helped me identify when my pelvic floor muscles were in spasm, when they were tense, and when they are relaxed. Internal stretching of the pelvic floor (similar to the methods described in "Headace/Pelvis") was very uncomfortable, slightly painful in fact; but really helped reduce spasms. Hopefully, your PT will give you stretches to do at home on some of the muscles that connect to the pelvic floor. For example, stretching muscles like the thigh/groin (Adductors), buttocks area (Piriformis), and hip/back(Quadratus Lumborum) have contributed to relief of spasm in my case.

Kegel excersises have helped me, but be aware that there is controversy as to whether Kegels are helpful or harmful to your condition.

In addition, your PT or a Chronic Pain specialis may be able to dry-needling, or inject trouble muscles with xylocaine to release myofascial trigger points, which may be contributing to, or perpetuating your spasms.

Good Luck
MS

[alprost]

Internal stretching of the pelvic floor (similar to the methods described in "Headace/Pelvis") was very uncomfortable, slightly painful in fact;

Your physio must be less of a sadist than mine! Some of my early treatments quite literaly bordered on torture, and it took every ounce of will power I had not to ask the guy to stop on a couple of occasions. However as a general rule, I have found that the more painful the treatment, and the more pain and inflammation I have for the next few days, the greater my subsequent improvement.

A funny story - after one of these sessions, where my screaming and laboured breathing could probably be heard for a few blocks, I walked out into the waiting room to see the face of an older lady who was in next, and who had never been to a Physio before. I don't know what she thought of the noise I was making, but I'll never forget the terrified look on her face when my physio told her he could now take her for her appointment.....

Thanksfully he managed to reassure her, and her treatment was pain free