What would you do??

[IC SARAH-CPP]

Hi Eveyone,
Well the saga with my hydro continues! I am STILL in SO, SO , SO much pain from this. I still have the severe knife pain with urination and I still have terrible burning and pressure down there. I have called and called and even been back in to the uro and he said he thought I might have an infection and gave me antibiotics, which I started taking on Sat.Nothing has gotten better!! I am getting to the point where I can't stand this. Everytime I go in to the bathroom, I sit in such agony and just cry :headbang: .
So my question to you all is what would you do?? I have called and called the uros office and that isn't going to help me. He told me that if it got too bad,to go to the ER but I really dont want to do that for various reasons. Number one is it costs 100 dollars, also because they will most likely not give me any pain medicine and will treat me bad. My uro is getting ready to be off for a month because he is having surgery on his back, so he wont even call me back. I dont know how much more of this I can stand :mad:
Feeling Helpless
Sarah

[ICNDonna]

I would call my primary care physician and ask for help. If you do have an infection, you really should have a culture done to be certain you are on the most effective antibiotic for the particular "bug" you have. Your primary care doc should be able to help with that. Unfortunately, sometimes it takes several days for antibiotics to be effective so that could be the problem right now, but I do suggest you have it checked out.

Donna

[Babs RN]

Sarah,
You're not in California are you? Mayber even southern California? If you are, your private nurse could be on the way. I'm worried about you sweetie, you sound miserable. You have been there for me, I just wish I could help you somehow, even by calling your primary's answering service(mind you not taking over for hubby) and would even sit with you in the ER so I can make sure you get relief. If you can tolerate my flare too(which thanks to my lovely new FP that I am paying for completely)can at least keep my pain somewhat in check with what he gave me. I don't want you to be helpless, or alone--although I am going through the same at least I call tactfully reinforce the patient's bill of rights,and that JCAHO requires pain and its relief to be documented, in fact they call it the fifth vital sign now. If you need to go in and want a fed up nurse to come with, PM me your number and I will be on my way. If you just need to talk as a distraction, I have pretty broad shoulders(darn swimming)to cry on. Please let me know what I can do for you, k?

Warm fluffy healing hugs,
Barb :grouphug: :kissing: :love:

[vm]

I agree with Donna - I'd want to have a culture done. If he prescribed an antibiotic that isn't effective for this particular strain of bacteria (assuming you do have a UTI), then it really won't help. I'd want a culture to see exactly which antibiotics will work.

I was given 3 days worth of antibiotics after my cysto w/ hydro --- as a preventive measure. I still got a UTI!!!! Very common after this procedure.

[IC SARAH-CPP]

So do you think I should go to the ER?? I just dont know what to do. I know if I go in there and they dont treat me, or treat me terribly, I am going to feel worse and be so mad that I spent 100 dollars for that.
I just can't understand why I am being treated this way. I am so upset about it. I had surgery a week ago and they act like I am crazy for expressing any pain at all?? I just dont get it, I am so upset.
Love Sarah

[kadi]

I would call your doctor's office again, remind them you had surgery a week ago & that you'd expect to be feeling better, not worse. If they instruct you to go to the ER, write down the name of the person who told you that, the date & time you called. (That way if your insurance company claims it "wasn't medically necessary", which they might do if no infection shows up in the test, you have proof that a doctor did feel it was medically necessary for you to go). Having the name, date & time of instruction to go to ER got me several hundred dollars off my ER bill when I appealed it.

OR Maybe your urologist or primary care doctor can call in the urine culture to be done at a local lab. Just make sure they put "rush" on the order so that you get the results in 3 hours, not 3 days. Much less expensive than the ER, if an antibiotic is what you're looking for.

Wishing you relief soon!

[IC SARAH-CPP]

Thanks Kadi, well the bill wont be a problem because I have Kaiser, so everything is done in house and it was already in the computer that I was to go if the pain was too bad. I am manly worried that the doctor will be mean to me. I went about a month ago and was treated SO SO badly, I dont even like to think about it. I guess I am worried now because of that, I swore last time that I would never go to the ER again unless I was really dying or something. I don't know if the same docs are always in there or not, so i didnt want to chance getting the same jerk again. Calling the uros office again is out because i have already called this AM and they told me my uro was gone and the woman was TOTALLY unhelpful to me, she made me feel even worse. The thing is, they keep saying that I am STRONG medicine and blah blah, I am on 10 mg of vicodin every six hours!! That is not STRONG medicine, like they make it sound. I am just dying, I cant stand this you guys, I cant stand it!!
Sarah

[Debgail]

Oh Sarah :kissing: I just feel so bad for you. I agree with BabsRn ..go to the er and take someone with you to "vouch" for you about how muc h pain youre in. I had a 1st horrible ex. like you. next time I took my hubby and he was forceful when I just couldnt be and insisted on me being out of pain. They gave me a demerol shot. i know they woudnt have if my husband didnt back me up and insist. P.s antibiotics for me are irritating to my bladder and will make things worse if its the wrong one it delays things... so i insist on a culture just to make sure whatever bug I have will be taken care of by the antibiotic they gave me. Several times they have had to change it midstream which was just another cost too. Wishing you to be out of pain, prayers and lots of hugs! Love, Debbie :grouphug:

[vm]

If it was me I'd just call the doctor's office, tell them you still feel really bad and ask if it would be possible for them to order a urine culture. In my area the doctor's office can call in/fax a lab order to one of the hospitals and I go and just give 'em a sample.

[myra33]

Easier said than done, I know. But since I have had a VERY bad experience with the first Uro I went to, I speak from experience. I had a very long discussion with my Urogynecologist while he was doing my cysto last week because I was having trouble understanding why I was going to a urogyn, as I associate bladder involvement with a Uro. He said that urologists are much more in tune with men and their related problems and that their involvement with women is usually more related to upper urinary tract isssues such as kidney and ureter troubles. Urogynecology as a specialty arose over just that issue, as well as the fact that other female problems can present similar symptoms to IC. To hammer home the point of this: when I walked into the first Urologist's office and saw that there were no stirrups on his table, I should have know that was going to be a very baaaaad visit!

This urogynecologist I go to is WONDERFUL! Not only is IC part of his practice each and every day, he also treats me like I have a brain and can actually understand what he is saying and even contribute my knowledge to the discussion. I know that for some people changing doctors and insurance issues can often stop them from acting, but you have to be an advocate for yourself. Just calling a dr's office and asking what they know about IC can help you in deciding whether or not you want to chance that dr. I sure as hell would not go to an ER when I am in a flare - if a uro can't understand or solve your problem, do you think that anyone in the ER would have a clue?

Finding the right medical personnel can be a long and expensive trip. It is easy for me to say because I am on Medicare and so far insurance has not been an issue. But, I am also my own best advocate and I will not put up with medical ego trips - I simply will not return to anyone who treats me like I have had a lobotomy and who obviously has no clue how to help me.

Try to find a dr. who knows exactly what is happening to you, really knows what IC is, and is familiar with the diet and medications that many of us take. You may go through 4 or 5 or 10 before you find the right one. But, believe me it is worth every bit of time and $$ it takes when you find the right one for you.
Myra

[kadi]

Hi Sarah,
I used to have Kaiser (before IC) and I did have trouble with an opthalmologist who was really rude to me. I went to an office called the Patient Advocate and they managed the problem for me. They gave me an appointment at a different Kaiser hospital with the head of the department there who was really good. And I never had another doctor be rude to me in either hospital. (Don't know if that was just lucky or if somehow they knew I'd had access to Patient Advocate).

Since it is Kaiser, the nurse should be able to send a lab slip down for you so you can get a urine culture done in the lab if they can't see you. Also, if you are trying to avoid a particular ER doc, maybe they have an "urgent care" clinic, instead of the ER. And the idea of taking someone with you if you can is a good one, when I first got sick & was treated badly by doctors, I noticed they became instantly more professional & helpful when a witness was in the room. I now have really good doctors where I don't have that problem anymore.

I wonder if you printed out some info on IC & how painful it is & took it to the Patient Advocate if they would help you. I believe each Kaiser has to have one since you are bound to arbitration instead of having the option to sue (not that you'd want to do that). Going on vacation & leaving patients unattended (especially post-surgery) is not acceptable.

Wishing you relief soon!