Hi all, new here

[mta_464683]

Hi all, I'm 29 and this is my first post. I've been suffering with this condition for about 4 months now. I have pain at the tip of the penis, burning urination and just a general discomfort "down there." I've been through multiple courses of antibiotics and while they've relieved my symptoms while on them, the pain always returns the day after. I think I'm a fairly typical CPPS patient since I've had some anxiety and OCD in the past few years. It's ironic because I was getting those better under control and then this hits.

I had my first trip to a uro a few weeks ago. I'm optimistic about this guy because he used words like "pelvic pain" and "muscle tension," but that being said he did just give me a new ABX (doxy this time) and some Flomax and told me to come back in 4 weeks. The uro did diagnose me with "prostatitis" but did not do the cystoscopy to rule out other things.

I have a few noob questions:

1. I've been on Flomax for a few weeks, no help yet, but no side effects either. Is it worth staying on this for longer?

2. I have the Headache book and any accredited quercetin product on the way. In the meantime, I've been on a generic brand on quercetin for about 5 days. It seems to have given me burning worse than usual. I saw another post that this is fairly typical when first starting quercetin, but how long does it typically last for?

3. How common is it for Uros to refer to a PT? I ask this because my insurance requires a referral to see anyone except my primary care doctor. That being said, even my insurance won't pay I think I'm committed to the PT route, but I do have concerns about cost and finding a good one in my area.

4. I've read that cold weather aggravates symptoms. My pain certainly started right at the start of the cold season here. Anyone have any ideas why that is considering most of us probably spend most of our days in climate controlled indoor environments anyway? Just seems weird to me.

Thanks in advance!

[webslave]

1. Yes. Studies say 3 months to see an effect, if there is going to be one. Don't get your hopes up on this though.
2. Not too long. The irritating, chemokine-filled secretions are draining.
3. Not sure. Becoming more common. Since your uro knows about the muscle connection, it shouldn't be too difficult. If you need material to convince him, there is plenty here (see Research Subforum).
4. Cold is a mast cell trigger and muscle spasm promoter. See viewtopic.php?f=4&t=7879 and viewtopic.php?f=4&t=5008

[mta_464683]

Thanks webslave. I didn't have much hope for Flomax anyway since I have pain only with no urinary frequency, but I guess it doesn't hurt to keep trying it.

A few more questions:

1. Is exercise good or bad? I run a slow, 10 minute mile every other day or so. Should I reduce that to walking for now?

2. Since I'm a relatively new sufferer, might I be able to completely cure myself just by quercetin, relaxation, and self massage? Just wondering if it's necessary to go the PT route at this point.

3. Any idea why medical professionals on the whole are so ignorant about this condition and insist on antibiotic after antibiotic? I mean my GP wants me to go on ABX for 8 weeks! No thank you! Is it just that they're not up to date on their research? I mean a quick Google search reveales that 90-95% of prostatitis is non-bacterial. I'm just so thankful for the internet and this forum in particular. It would have really sucked to have gotten this back in the "dark ages," without knowing what the hell was wrong with you and going from doctor to doctor in vain.

[webslave]

1. Good, in moderation. Some sufferers have a CFS component too, in which case only the mildest exercise is appropriate. If there is no sign of persistent fatigue, exercise is fine, but not weightlifting-type exercise that involves the pelvis, like squats.
2. Yes. And use the advice in the A HEADACHE IN THE PELVIS book to supplement all that.
3. GPs are notoriously ill-informed about CPPS. Most have not even heard of it.

[mta_464683]

So I had a follow-up with my uro yesterday. He scheduled a urodynamics test for tomorrow and said he will likely refer me to a PT next appointment. He also gave me some rectal valium suppository to try when my flares are really bad. This is my first uro, and I think I'm really lucky to have found a guy that seems to really understand this condition and believes in the muscle tension disorder theory.

1. Anyone get a urodynamics test before? Will they be able to tell if my pelvic muscles are tense from this test? Will they be able to rule out other possible things like stricture?

2. Anyone ever tried the rectal valium suppository? My uro thinks this will help calm the pelvic muscles but not give as many of the traditional valium side effects like drowsiness.

3. Had bad burning for a few hours the other night after being constipated and dropping a large stool. Is constipation something to be avoided with this? I do have a history of IBS. Thinking of getting some Metamucil to make sure this doesn't happen again.

4. A couple months ago I got a really bad cold/flu with a cough that lasted for 6+ weeks. Can a cough contribute to CPPS symptoms? I'm thinking most of us tense our pelvic floors when coughing.

Thanks again!

[webslave]

1. Urodynamics cannot see pelvic floor spasm but can see stricture and any disorders involved in the smooth muscle used for urination etc.
2. See viewtopic.php?f=7&t=7432
3. IBS is linked to this condition. Take any measures you can to control it.
4. During coughing, the pelvic muscles are tensed and this could have exacerbated the underlying condition.

[mta_464683]

So my urodynamics testing got extremely painful when the inserted the catheter. I almost wasn't able to finish the test. Really surprised they didn't use an anesthetic, but I suppose the pain is worse for us CPPS people than normal folks. Still in quite a bit of discomfort, so just took a valium. The official pamphlet says the discomfort should only last for "a few" urinations after the test, but I'm worried now this triggered a flare-up that will be hard to get rid of.

I don't have the official results yet, but the nurse said they would probably be normal. I guess that's not a surprise. Guess I'm almost officially a card carrying member of the CPPS community. Yay?

Another thing is that they gave me two doses of Cipro just in case the tests gave me an infection. I'm laying off the any accredited quercetin product for now since I read there could be an interaction with quinolone antibiotics. Anyone know how long after finishing the Cipro I can get back on the Quercetin? Thanks!

[webslave]

The urinary excretion of ciprofloxacin is virtually complete within 24 hours after dosing. So you can go back to any accredited quercetin product after that.