Cystoscopy w/hydro cancelled again!!

[glassd18]

Hey Everyone,

Well I just cancelled for the second time another cysto/hydro. I decided that after quitting my job a couple of weeks ago that I could not afford to do it, so I opted for a regular cystoscopy. This way at least I will know for sure if there is anything else going on beside IC, and then I can relax. I don't think my uro was too happy, but she agreed to do the regular cysto so she can't be too upset. (I hope). I felt a huge weight lift off my shoulders too when I cancelled. I really don't think my treatment would have changed much anyway: Elavil, Atarax, diet, cystoprotek. Oh yes, and my uro refused to do the Potassium Sensitivity Test to diagnose my IC.

The one thing that has been bothering me a bit is that my uro is part owner is the surgery center where it would have been done, and I had to sign a paper acknowledging this. I felt that I was being pushed a bit to have this done. When I called to find out my alternatives the assistant was almost giving me a sales pitch as to why I should have it done. She said that when I get it done I could have medicine instilled. I could have medicine instilled without having to be under general anesthesia anyway, couldn't I? This was disturbing to me a bit. I thought some people do their own instills at home too. I understand the importance of the diagnosis with this procedure, but in reality it will not change anything anyway. I have IC, and there is no cure. My main concern right now is to look inside to make sure there is no cancer (which my uro doesn't think there is) or stones etc... To me the rest is what it is.......IC. I'd like some opinions on the uro as a part owner thing.

Thanks a bunch.

Di

P.S. I don't think my uro's assistant likes me very much because she is never very friendly when I call her and ask for questions. I feel intimidated, that would be how I would describe it. I am as scared as the next patient, and so I do have to ask questions. No one should take their health lightly so why do I feel that when I have genuine concerns I'm treated like an idiot. I don't know what I've done to be treated this way. I have a hard time taking prescriptions because I'm very senstive, and get a lot of side effects that I can not tolerate, but that's my system, not me. I would love to be able to take everything they offer as medicine, but the cure shouldn't kill you. So maybe they view me as a difficult patient? I hope not because I'm really trying. I did the diet right from the start, I took cystoprotek, and I'm trying to get on the Elavil and Atarax. Anyhow I'm afraid my uro might drop me, but then why would she agree to do the regular cysto if she was in that frame of mind. Oh gosh, I'm rambling!! So sorry I'm just a little worried, is all!!! Thanks again for listening to me!!

[ICNDonna]

When I had my first hydrodistention, I decided to go for it because my father had symptoms almost identical to mine with his bladder cancer. I wanted the biopsies done to absolutely rule that out. At the time I didn't even know what interstitial cystitis is --- I've learned a lot since then! When I had my office cysto, my bladder looked completely healthy and normal; the only problem was that capacity was smaller than normal.

That was 31 years ago and I think there are simpler tests now to rule out cancer so that isn't as huge an issue any more. The great thing is that hydrodistentions have helped ease my symptoms so much that to me it's well worth it.

In this day of higher and higher hospital costs, many physicians are investing in surgery centers --- in most cases it's less expensive than the hospital setting.

Donna

[glassd18]

My uro said she would do a biopsy during the cysto/hyrdro unless she saw something that bothered her. I asked her if she would test for mast cell at the same time, and she said no to that as well. She told me it would not effect the treatment.

I know that unless the bladder is hyper extended you can not see the pin point bleeding, but at least a regular cysto would let her take a look around for any other abnormalities such as bladder stones. On a regular bladder cysto they would still see a tumor or something of that nature, right?

Thanks for the info Donna, I appreciate it!!

[Ginny]

Have you already been diagnosed with IC? Is the reason for the Cysto/Hydro to get a diagnosis?

Ginny

[RAS6]

Just to let you know, you are not alone in being sensitive to medication. I tend to have negative side affects with EVERYTHING I take, though I am lucky that it is only nausea with the Elmiron and not hair loss. It is difficult when you feel like your Doctor and staff are not listening to you. I felt like this too, and finally stopped beating around the bush with the Doctor's and nurses I was seeing. If I had a concern or felt like I was being treated a certain way, I said something about it. I made sure to be polite and not jump down any throats or make accusations, just express my concerns and explain that I like to be on top of my treatments and health. It went well and I think it was necessary. One of my biggest issues (driving so far for treatments) was solved when I brought it up and the nurse mentioned that I could get those at a closer office (no one told me this before). At the practice I go to there are 4 offices and 6 Doctors and I really have to ask questions and make phone calls to get things done.
Good luck with this situation and I hope you feel well soon!
-Rachel

[Trishann]

I just want you to know some doctors do not check for mast cell. It really depends on the doctor.

My heart doctor has a center too, and I love it. It beats going to the hospital and having test run there. People seems to be more polite and nice and not just another patient.

Hugs, Trishann

[glassd18]

Yes the cysto/hydro was to confirm that I have IC. Without a job right now though I couldn't afford another medical expense. I will be glad just to have the inside of my bladder looked at next Monday with a regular cysto just to ensure that nothing else is going on. I've already told the insurance company that I have IC because we were applying for new insurance.

[Trishann]

If you was not diagnosed with IC yet, why tell your new insurance you have IC.
I understand about the money issue, that can be a sticky situation, but why telling your new insurance something that might cause you to paid more money, and yet you have not been diagnosed with IC yet.

Hugs, Trishann

[glassd18]

Well my uro knows I have IC because everything has been ruled out one by one. CT Scan, Ultasounds, STD tests etc... The only test not done yet is the Cysto/hydro. It was the insurance broker ( I was the plan administrator at the time) who suggested that I put in down because it could be looked at as a preexisting illness and then insurance would refuse to pay, and that would be bad. On my last physical at the bottom of my check out chart my md wrote IC as the diagnosis as well, and my uro and md communicate to one another. Better safe than sorry in this case.

[Trishann]

I hope the best for you. Maybe once this new insurance kicks-in, hopefully they will paid for you to have the test done. Hope you start feeling better too.

Sending hugs,
Trishann

[Trishann]

I noticed you said you had an ultra-sound done also. I did too. Absolutely nothing show up. I can't understand it because my bladder is already serverely damaged. I wonder why they couldn't tell that from the outside of the bladder. But also they expected me to hold my urine, which was impossible. I felt like a dog urinating on the side of the road. It was to the point urinate in the car or pull over. I just could not hold it no more and I hurt so bad. This IC is something else.

Hugs, Trishann

[glassd18]

I went for an ultra sound because they saw a fibroid on my CT Scan. Funnily enough the fibroid is on the right side right near the bladder so I was thinking all along that it was the fibroid causing my problems, but the md and uro say that it is too small to be causing my bladder pain, frequency, urgency etc...My pain is always on the right side too. Thanks for your well wishes. I'm actually feeling pretty good these last few days. I still have symptoms, but they are pretty low right now. I'll let you know how my cystoscopy without hydro next Monday goes. It is a killer to try to hold water for an ultra sound for an ICer, but I managed. I believe the damage to the bladder is on the inside not the outside so an ultra sound would not have shown anything. Thanks again!!

[Trishann]

Yes, I think you are right about the utra-sound. Hope you find out something and I am glad to hear you are doing better.

Hugs, Trishann