Suffering for 25 years and have questions...

[neue01]

Holy smokes!!! Do not have your prostate removed!!! That's the most insane thing I have heard.

I had this condition for 8 years or so before finding the path out of the woods. I can relate to what you've been through. It's hell on all levels. This is a muscle issue and being that you've had this injury for so long it's going to take a lot to loosen the muscles up again. The pain medication is not going to cure this. You need to start physical therapy, stop activities that aggravate your symptoms (sex and masturbation included), start relaxing and stretching. I can say without a doubt, you will get better over the next two years. I look back at the road I took and where I was when I started here and things are so different now. I'm still learning about this condition today even. It's not an easy road and massage and the like will test your limits at times. You will get better though. Welcome aboard. ;)

[REV800X]

Thanks neuo01, I just called to try and get a prescription for PT. We happen to have an expert in these issues locally so I will try to get in and see how that goes. I have ruled out the prostate removal deal, and will evaluate that whole thing once my results come back for infection. Will know next week on that. I just wish there was more concrete evidence on the PNE surgery. It sure is difficult to get information. You are right though as the first thing I need to do is get a good PT evaluation and find out where I am at. I also have some chronic SI joint issues which may be contributing. Then the recent confirmation of IC probably doesn't help either.. I appreciate your help. Thanks.

[webslave]

I see from your profile that you have been taking 15mg diazepam for 16 years. What do your doctors say about this? Please review the long term effects of benzos. Diazepam is only recommended for short-term therapy at the lowest possible dose owing to risks of severe withdrawal problems from low doses even after gradual reduction. There is a significant risk of pharmacological dependence on diazepam and benzodiazepine withdrawal syndrome. You could be experiencing the paradoxical effects of the drug, which lead to more anxiety, not less.

[REV800X]

Wow, I didn't even think about that. I guess I trusted what had been prescribed. I believe I started the diazapam in about 1990, so 21 years now.... I will look at the link you have provided. I do have to say that between that and the ibuprofen that that was the only relief I got, and was in misery without both. During the good years as long as I maintained about 2400 mg of ibuprofen and the diazepam I could do anything, but not things like ride a bike, and no foods such as caffeine impacted me. Now with this flare up life isn't fun.

If nothing shows up on the prostate culture, I'm thinking that maybe it all started out with the IC, then over the years my pelvic muscles started to tense up and got out of whack, and maybe this combination led to some nerve issues... Not sure..

[REV800X]

Well, after the diagnosis of IC last November by Dr. Antolak, I wasn't sure what to expect. He prescribed 90 days of Cipro which I took as well as have been seeing a pelvic pain PT now since December. I had been functioning perfect with no pain the last several months. 5 to 7 miles a day on the treadmill, working out, snowmobiling, and on the motorcycle. The Cipro ended two weeks ago and the pain went right back to a 10. I could hardly function. Woke up each morning burning up and sweaty, painful urination, and the same old pain issues. I got back on Cipro a week ago and today have no pain.

I spoke with Dr. Antolak yesterday and he says there is no way I have an infection, and it is just the anti inflammatory aspect of the Cipro that provided the relief. He said I need surgery.

With my history I just can't understand this and my gut tells me he is wrong. The only problem is I can't live in pain, can't take Cipro forever, and no other dr.s to work with. And now this cycle of Cipro is giving me tendon pain, so I'm concerned about that...

Any opinions on this from anyone? Just go ahead with Antolak's surgery? I'm out of answers....

[elitynski]

Dear Rev - I don't want to give you medical advice. I think it's disheartening to see a doctor treating you with ABX when there is no bacteria present.

I've heard repeated stories of ABX working due to the anti-inflammatory aspects of the drug.

I would caution you against this surgery until you try some other routes. If you are dealing with an IC issue - you might want to consider a consultation with Dr. Shoskes at the Cleveland Clinic or Dr. Robert Moldwin out in Long Island.

I know that insurance benefits and money can play into these decisions but hopefully you have resources available so you can conisder these possibilities.

I totally understand about the pain and I'm so sorry you are having to deal with it. I wish they could find a way to calm these inflammatory conditions but it seems so complicated.

I am wishing you the best and hoping that you can find some answers.

[webslave]

Stop the Cipro. Stop seeing Antolak (a one-trick pony). Get to a uro who is an expert in this, such as Elitynski suggests. When they have diagnosed you, come back.

[REV800X]

Thanks. Yes I agree.... I'm doing the pelvic PT, I'm doing the other right things, now I just need to see an expert. I'll be back then. Thanks.