New to site but not the condition

[jasfra]

I wish I had found this site years ago. I've learned more in a few hours than in the five or so years I have been dealing with this.

The pain and problems started shortly after I finished grad school. Symptoms were pretty minor: occasional urge to urinate and some random pains in the groin. I didn't think too much of it; flares would last a day or two and then go away for months. I didn't see a doctor until until a really bad flare up that lasted several weeks. No real diagnosis, prescribed Cipro and everything cleared up. Since then the flares have been more frequent and longer lasting each time. I was mistakenly diagnosed with everything from kidney stones to UT infections to muscle spasms (the latter seems to be correct after what I have read here, although I think the GP pulled that one out of his ass.) Treatments have ranged from drinking a lot of water to the aforementioned antibiotics to muscle relaxers. All were somewhat effective but never lasted, symptoms always went away on their own after stopping the medication. I wasn't diagnosed with chronic prostatitis until I finally saw a urologist about two years ago, again more antibiotics, along with CT scans, MRI, cystoscopy, all negative. Again symptoms went away or at least became manageable after I stopped treatment. Frustrated and somewhat scared I ignored the problem for almost a year and a half. I went to see another uro a few weeks ago. Same diagnosis, same treatment, still no relief until I found this site. I've been on here for damn near 10 hours straight, so much makes sense now yet still so many questions.

This is by far the worst bought I have had with this condition, urinary symptoms aren't as bad this time around but pelvic pain is sometimes unbearable. I have always had bowel problems with flare ups but always told that just a symptom of what ever urinary problem I was diagnosed with at the time. I feel that most of my pain this time around is caused by the bowels, although I still have that proverbial golf ball in my ass. From what I read I feel that I have IBS, in fact I found this site by googling IBS and prostatitis. Mentioned this to urologist and again was told it was just a symptom only women get IBS. Drink water and fiber and it will pass. I'm unbelievably tired, muscle aches, and swollen glands in throat and arm pits again from what I've read sounds like CFS. I've been scared to death that something else is wrong and still am, but reading post's from others on this site is giving me hope that I haven't had in a long time. I guess my biggest problem now is how do I get my doctors to see that these other symptoms are real and get treatment for these other conditions? I am armed with a ton of new information but still don't know what to do with it.

Any help and advice will be greatly appreciated.

[webslave]

Please fill out your signature (see my sig for link on how).

Mentioned this to urologist and again was told it was just a symptom, only women get IBS.

Completely incorrect. Don't see that uro again.

I'm unbelievably tired, muscle aches, and swollen glands in throat and arm pits again from what I've read sounds like CFS.

Yes, CFS, that's the same as I had too.

I guess my biggest problem now is how do I get my doctors to see that these other symptoms are real and get treatment for these other conditions? I am armed with a ton of new information but still don't know what to do with it.

Doctors have limited utility for this patient group. Your biggest problem is to effectively re-orient your thinking and practices.

[dvdx2]

Welcome and sorry to hear about what you're going through - for me the key is physical therapy (stretching), reducing stress and anxiety and deep breathing.

Takes a while to find out what works - hope things improve a little for you over the next few months.

[elitynski]

Jasfra - so glad you're here and that this site has been beneficial for you.

It's interesting that I had the same experience as you. When I encountered this the first time (approx 10 years ago), my doctor gave me a script for Cipro and it worked and then no problems for another 5 years.

Since then it's been a different story - URO visits (and I agree with Webslave) - any URO that says only women get IBS is ignorant and you need to find another one.

You will find that everyone who is successfully battling this has a different protocol. The important thing is to find what might work for you. However, it seems that the mental work is as important as doing the physical things.

This is a very supportive board with a lot of good info.

Good luck in you journey!!