Second opinions

[Hangin' Tough]

I just went to a second Urologist yesterday at the request of my family doc. He was impressed with the work of my first Urologist and concurred with his findings. His comments "your so young it is sad that you have to deal with this kind of thing, hang in there". Wow. My frequency and urgency have been helped greatly with the ditropan xl at 15mg per day. The only symptom they refuse to treat is the pain. I ask for a referral to a pain management clinic. I am hopeful that this is the answer. This chronic pain just wears me out. My wife says that I am a bear, so I spend most of my hours out of the house. I just want to get back to some semblence of normality. Hope this finds everyone "well".

[Iris]

Hi I am so sorry you are having a rough time with the pain, I know exactly how wearing the pain can be, I thought I would never make it through at times until we found the right meds to control the pain. Hope you can find some relief soon, all the best Iris. hi grouphug

[ICWarriorHubby-iH8iC]

HT,

Get into pain management. DEMAND it. Don't back down until you get there, and switch providers/groups until you get what you need.

Most Uro's and PCP's are scared to death of Pain Meds and prescribing them, even referring you to them. Its all about malpractice lawsuit fear, and a culture of them thinking they can heal you without pain meds, and that you'll get hooked if you go that road.

Keep on, don't waiver. Sometimes it takes several demands before they refer you out. Once there the pain docs know how to treat you, although not a lot treat IC pain, especially in men. I've found that my wife has to bring me along as a "credibility prop" every other month or so to get good service. When she's in the pain management room by herself, an intern comes in, gives her 5 mins, and leaves, then the doc comes in and gives her 2 mins and leaves.

When I show up we get a good 15-20 mins if I'm in shorts and a T-shirt, 30+ mins if I'm in a suit and tie, and they're more likely to shift her to more powerful meds or new/experimental/trial meds if I'm along to support her claims of the drugs not cutting the pain.

"She's up all night, she cries all night, we don't sleep, can you tweak the meds/is there something new we haven't tried?" coming from a spouse generates more service/compassion from her docs at a major SoCal teaching hospital. I don't know what it is, but having hubby there helps.

Without the pain meds my wife would have killed herself 2 years ago, it's the only thing that gives her some semblance of relief and gives her a portion of her life back. With the new Fentanyl lolly pops on top of the Oxycontin, she can now leave the house and run (a few) errands for an hour or two. THANK GOD FOR PAIN MANAGEMENT, because we''ve tried EVERY thing in the uro's bag-o-tricks and nothing has worked long term.

Keep on those PCP's and Uro's, if one won't refer you, try the other. Just realize that they go to seminars about the dangers of prescribing narcotics. The pain specialists know how to monitor you and keep you in check. I'd suggest to my PCP or Uro that they send me to Pain Management "For an evaluation" and let PM take it from there.

Hope this gives you some mental support/relief. Getting to PM can be tough, but it is worth it in our case. -ICWarriorHubby

IH8IC = I hate IC

[Hangin' Tough]

No wonder you call yourself the IC Warrior. I appreciate you taking the time to put all of that into words. It is an uphill battle. It is funny sometimes talking to doctors about IC, it is generally regarded as a "womans disese". My wife was with me for my second opinion. It was a real eye opener for her. She believed my descriptions, but the explaination coming from a doctor was a shocker. I think my GP thinks I'm nuts. I will get a PM referral from him or from my second opinion Urologist. He said they would probably do me some good. I know and understand about the malpractice and DEA worries, I worked in a hospital for 8 years, but it just flies in the face of taking care of people in need. I am thankful that I have a job where the 20+ trips to the bathroom and having to get up and walk around because of the pain are not a problem, otherwise I would be in a great deal of trouble. Tell your wife to hang in there, somewhere there is relief for us.

Steve

[ICNJess]

I am in Pain Management...and it's a pretty good program. The docs are friendly, they know you are hurting, and they are ready to prescribe help! I wish you lots of luck, and welcome to the boards. :)

[Hangin' Tough]

I'm glad your getting relief. I only want a little relief. I'm not hard to please.

[ICNJess]

LOL I hear ya! They have yet to find a combination of meds to make me comfortable, but we're working on it! They're hopeful that I might be in that small percentage group that finds Interstim to be helpful with the pain. ~~sigh~~ I hope they're right!! :)

Hugs,
Jess

[ICWarriorHubby-iH8iC]

Steve...

My wife was an ob nurse for 6+ years and a surgical nurse for 5+ years. I've noticed that A LOT of nurses/healthcare workers tend to have IC. I've often wondered about some kind of viral/infectious work-related bug that can't be picked up by today's tests... but it just seems weird that SO MANY nurses have IC.

Although I do believe there is a major genetic component to IC, or at least the propensity to get IC, I can't help but thinking sometimes that there might be some superbug out there that causes or triggers IC. Any thoughts?

Anyone else out there? Nurses? Etc.

I H8 IC = I hate IC! Damnit!

[CoyoteMystro]

My mother is a CNA, Certified Nurses Assistant and for many years she worked at a Hospital in Oklahoma, even while she was carrying me. Now, she works in a Nursing Home. She doesn't have IC, but she does sometimes have PMS problems that she's had to seek help for. Maybe it is possible for Hospital workers to somehow "contract" or "carry" IC or something..

The entire female population on my mothers side are Nurses or Nurses Assistants.. Kinda wierd.. Only one of them possibly suffers from IC though, but she had/still has cancer, but it's not bladder.

[auntiedeb]

grouphug grouphug When I was first diagonsed in the 80s with ic, I was working at a state shcool for the mentally challanged. work there for many years 14 years. Then I got my nurses aide certifciate and worked in nursing homes and then got a home health aide certifacte worked in homes of the elderly. Then in 98 diagonsed again with ic and was working with a day care center. Had some remissons. now in 2003 I got diagonsed with ic again and working at Walmart. I have had ic since the early 80s but now it is back full force than it ever was. I hope steve that you get some relief and I will be praying for you. I have a wonderful uro who is willing to treat the pain. I don't have to ask that often for pain meds. Hope you get what you need. grouphug grouphug

[ICWarriorHubby-iH8iC]

My wife thinks that being on her feet on 12 hour recovery room shifts, not being able to void, skipping lunches and breaks, stressed her bladder and diminished its capacity. Just a theory.

Those bastards didn't let her take breaks at all. It was totally illegal, but standard "operating" (no pun intended) procedure. -IH8IC :mad:

[Hangin' Tough]

I fear that we may never know what causes IC. At this point, I have it and I have to deal with it. My strategy is always be as informed as possible. I felt like I was almost as knowledgable about IC as the Doc was, which is not a bad thing. If you are informed they cannot blow you off or bs you, unless you let them. My experience in the medical field had definitly improved the care that my family and I recieve. The old saying "don't expect anyone to take care of you, except you" would be a very wise thought for all IC sufferers.
Everyone just hang in there, it has to get better.

[ICNJess]

I'm sorry that you've had a rough time with docs. :( Not all are bad, though. I admit, I've had my fair share of lousy docs, but my Uros now are wonderful. One took his internship specializing in IC; one is highly regarded for IC and Interstim management.

Anyhoo, I have often wondered about the cause of IC. There are so many theories out there. I believe in a couple, but I imagine they will be pretty hard to prove. I certainly hope we can get an answer to our "why"!!!! They can put a man on the moon but they can't figure out why we are suffering??? *SIGH*

Hugs,
Jess

[ICWarriorHubby-iH8iC]

Going to docs at a teaching hospital, and watching the turnover there, we oftertimes know a lot more than the docs about IC, unless that docs is studying it specifically.

We keep an IC binder (about as thick as a metropolitan phone book now) with everything we've learned. It helps explain IC to friends/family and also to docs. We're more "up" on the research than they are, by far. They're too busy prescribing Viagra to study IC, more profit in it that way.

Am I getting cynical? Ok, ok, off the negativity trip. But its a good idea to document everything in an easy to grab binder. Helps document the SS case (if need be). -ICSamuraiWarriorHubby

"IH8IC"... I think I'm gonna put that on my wife's license plate!!!! hi

[Silverfox]

Hi IC Warrior Hubby,


Sent a you a special PM and I hope to hear from you real soon!

We need a true IC Warrior on our side!!

[sonick]

ICwarrior: your battles rank in the most heroic in history. I'm sure your modest about your resolve to help your wife, but you really must know that what you're doing is nothing short of saint-like. As you look around at the other people here and see what's going on, there can be no doubt that you are performing the most important service on earth.

Hangin' tough: I wanted to tell you I saw your support to me in another forum and was greatly inspired and appreciative, but I forget which forum it was! So I replied here, lol. You are NOT alone, this is my third year post-diagnosis, 8th year post frequency/urgency upward taper, and 1st full year of intense pain. I don't believe this is indicative of a "progression" as they say so don't project these timetables on yourself, just sharing where I'm at so you know there are other young men out here like you. We CAN beat this. Have you read "a headache in the pelvis" yet ? I feel there really be something powerful to be harnessed there, but that's just my opinion. You have my full support and I'd be glad to help in any way I can, whenever I am able to. My responsibilities have dropped considerably since difficulties with my job, and to tell you the truth, it's been quite liberating in the face of the great fear I had before. Point being, I have more time now to help, and I am dedicating my life to two things at this time: 1) IC , and 2) my firewall invention ,the latter being a means (I hope) to infuse more money into the research coffers for IC. Optimistic for sure, but my life seems to point towards this as a purpose, so what the heck!

Anyhow, you always have a peer with many of the same trials and triumphs as you, though sometimes the trials may seem to be too much. You can find me at sonick@sonick.com, no topic can shake me or embarass me, I dropped that guard down long ago before my first hydrodistension.

Stay strong brothers and sisters, there is a yin to this yang in the future.

Jayson