Advice? had cystoscopy and CMG today

[Toronto]

Hi everyone,
yesterday was my first time to this board, I had my cystoscopy and CMG test today, they froze me with gel and that is it. I didnt find the gel worked, and the catheter was quite painful, and when they filled my bladder it also was painful - is this normal? my family doctor had told me they would give me some painkillers, but they didnt. I still have some burning, and it hurts a lot to pee, so I hope it goes away soon. the actual cystoscopy wasnt too painful, but the first test (CMG) really hurt, it was done by a nurse.

At the end of the test he said that I have IC, because there is nothing else wrong. My bladder was a little red, and I couldnt hold a normal ammount of water in my bladder, but he said it was not too bad. How do I know that it is actually IC, if he says he is not exactly sure? I do have the symptoms, but shouldnt my bladder have appeared un normal.

He said I could take elmiron, and go for DMSO but I dont want to go once a week to the hospital, and I hate the catheter, I found it quite painful.

I feel confused, I dont feel like I have good medical advice, my urologist gets short with me if I ask him questions, and he is always running out the door before I am done asking questions. He doesnt have the time for me. I guess I am just wondering if anyone else is going through the same kind of thing - with not knowing what to do. Or does anyone have advice, on what I should do regarding the treatment.

Also will this disease get worse over time?

I am so scared

[patricia1]

Doing an in-office cysto is alot different then the one done in the hospital under sedation. An in office one is not going to show the abnormalities and stuff than the other. The reason doing in the hospital is to enlarge the bladder as much as they can. Under normal circumstances most would not be able to endure this even with out IC. Usually they dont give pain prescirptions for an in-office one either.

Starting elmiron is usually the first treatment most doctors start with. Be aware that it can take anywhere from 6 mths to 1 yr for it to work. Honestly, if you dont feel comfortable with your uro you do need to find another one. IC is a disease that is not going to go away. You may have times of remission, but you still need to have a great doctor patient relationship. For most of us it takes going to many uros to find the one we trust and like. Myself I have been to 6 different ones.

IC is not usually progressive. Usually once diagnose it does not get any worse than what it is at that time. Some IC'ers do tend to get worse of the years, and I believe this is due to lack of medical care because we are spending so much time trying to find someone to listen to me. It took me 5 yrs to get my diagnoses. My uro stated once that if it had been caught alot earlier the treatments more than likely would have helped me more. For me most meds and treatments did not work and I ended up with a faulty Interstim.

Diet plays a huge part in IC. Have you started or tried the IC diet? if not I highly recommend this. Hoping you start feeling better soon.

[Toronto]

thanks for the reply, I have not tried the diet yet, does it actually help? These are the kinds of things I wish my urologist would tell me, I know I am responsible for my own health but it would be nice to have someone to talk to.

My procedure was done in the hospital, but I dont know exactly what happend. first they put in the catheter and then filled my bladder with water, it hurt like hell, and I told them to stop, then the nurse said can I put a little more until it is unbearable. So she filled it more, and I said to stop so she stopped. Then I had to wait for them to drain it. I had really bad cramping and my bladder was fuller than it has been in a long time - that part of the procedure was awful. After they drained it, then the doctor came and did the cystoscopy, he said there was a little redness, but that it was not too bad.

And then he said I am going to diagnose you with a mild form of IC, but we cant really be sure that IC is what you have. My symptoms started to get really bad in November and since then I have been off of work, they cant find anything that is wrong, so after this test he says it is probably IC and that I should start on the Elmiron, and DMSO.

I think that it was caught early on, from what I understand. I think I will take your advice and try to find a new urologist, because the one I have now is not much help.

What do you guys to do cope when it gets really bad, Is there a certain pain medicine that you take for the flare ups? My doctor has given me different things, but they dont seem to help.

I guess I will start the diet too,

thanks again!

[patricia1]

Sounds like even though you had it done in the hosptial in still was not the cysto with hydro. usually they do this under anthesia of some form either complete or epidural type.

Yes the diet does help and for some people it can be the only treatment they need. You can find it in the patient handbook at the top of the page. There are different things you can do to help cope with flare ups, that to is in the patient handbook anywhere from the diet to using heating pads. For me, my uro will not prescribe narcotic pain meds. I get only 15 a month from my gyno, but I do get Ultram from my uro. It is a non-narcotic pain med. It does not last as long but for me it works well and for others it does not. Be aware that even though they say its not habit forming if you take it daily as I do and stop suddenly you can go through withdrawls just like the narcotics make you do.

I think changing uros is a good idea especially if he did not even mention the diet. Along with treatments this should be the first thing he discussed. Even if you did not have IC it will help with a irrated bladder.... :grouphug: to you. I know in the beg it is so scary and confusing, I promise once you understand the disease more and know what bothers your bladder and does not it will get easier. Even with mine consider severe, it's alot easier to handle now than in the beg.

[Ginny]

Did they say if they did a biopsy? That is what would tell them if it is IC.
I was diagnosed by an in office cysto without the hydro but they did do a biopsy. I know you said you were in the hospital but like someone else said they normal put you out for the hydro and cysto that they do in the hospital.

Ginny

[Toronto]

I dont think they did a biopsy, he said it was a cystoscopy and a CMG, I ask him to explain but he does not take the time. He said it is a camera going into the bladder. But then I had that water thing done, which he did not even tell me I was going to have. I ask questions but he gets upset, like I am wasting his time. So I dont bother anymore.

What is the hydro thing?

I was confused becaue my doctor told me that for sure I would have something for the pain and to make me drowsy, but when I went the urologist gave me nothing but the gel. And I would never do it again under those circumstances because it really hurt alot.

So I guess with this disease, you pretty much have to learn everything for yourself? becaue he didnt say anything about diet, and I have been given nothing to cope. I feel like I am suffering, and I know many of you guys have it much worse, I dont know how you do it. I am getting really tired.

Has anyone tried Cysta-Q? I ordered it online, it is a herbal supplement.

Should I ask for a biopsy? What testing procedure were you diagnosed with?

[CanadaMel]

My cysto was in the hospital, but no anaesthesia. I had a potassium test done, which confirmed IC. They put water in first, see how you feel, then put a potassium solution in to see if that hurts - it really hurt! A normal person wouldn't know the difference. My uro basically told me to go online and read up about the disease. I was really upset and confused at first too (October/November). Now I've done my own research and I think I'm figuring things out. And yes, as much as I hate being on a diet, it does help. The stricter the better, at least at first.

As for the doctor, I printed out info to ask him about, so he was forced to see what I was talking about. I asked him about meds, etc. His way of thinking is do the hydro with instill (just did that last week), see how you do, then possibly proceed with instills. I go back in 3 weeks for a follow up and we'll decide what to do. I didn't like him at first, and went back to my GP to see about going to another uro, but after talking to him, he confirmed that the path we were on were typical "first steps". He also read me the follow up letter that the uro had sent to him about what steps he was going to take, etc. which did clarify it for me. I may still see another uro, but right now I'll wait and see. I may refuse the instills anyways, and see how I can do on my own with diet and allergy shots (I have a lot of food allergies which make it worse too). I currently don't get urethral pain, but I'm worried that weekly instills might cause that.

Yup, it's scary. I think I'm finally starting to accept it. You will too. Just don't be freaked out by what you read - that's what I did (and still do) to myself, and it's pointless. Just take it one day at a time. It's your disease, and you will figure out, with time what works, what doesn't for YOU. (oh, and stress/anxiety will make it worse. I've started yoga and it helps)

Take care

Mel in Vancouver

[patricia1]

A hydro is an hydrodistention where they over distend the bladder with fluid. After fluid is drained a camera is reinserted to look for pinpoint hem. and glum. Sorry for the spelling. People would not be able to withstand a hydrodistention awake is the reason for putting you to sleep or doing it witha epidural.

For me I learned everything about my disease myself. My gyno and I knew I had IC 2 yrs before diagnose. Even asked specifically to be tested but the uro refused

There are people on here that have used the Cysta-Q.

I would not specifically ask for the biopsy. IC can be specifically diagnosed without it. Through the above, by symptoms alone, or the PST (potassium sent. test)

[Toronto]

thank you for the information, I have learned a lot already from this site and from your stories.

I guess I was kind of hoping that maybe I didnt have IC, and that it could be something else more treatable/curable.

I am going to pick up my prescription for Emirol, so hopefully over time that helps.

Its going to be a long road...isnt it? There is no quick fix.

I am also going to try the diet starting tomorrow.

Thanks guys:-)

[Toronto]

do you know why they did the water test (CMG) does that have anything to do with diagnosing IC? I wonder why he wouldnt have done the potassium test instead???

[CanadaMel]

The KCL test (potassium) can be very painful and irritating, and not all doctors do it. I think there is some controversy about whether it's necessary. It's like putting salt on a wound! It wasn't that bad for me, but I suspect mine isn't as severe as others'.

I learned a lot reading the archives of guest lectures:

http://www.ic-network.com/guestlectures/

Hang in there babe!

Mel

[Toronto]

Oh, I'm glad he didnt do it then. I will read over those archives too.

Thanks:-)