Refusing my cysto with hydrodistention?

[mcdoll]

So, my urologist wants to do another cystoscopy, because the in office one I had obviously didn't show anything. However, the doctors are so sure I have ic they have already begun treating me. My main symptoms are frequency and urgency. I go about 20 times a day and wake up frequently through the night. Bladder control medications did nothing. My cystoscopy was the most painful experience I've ever had, they couldn't even keep filling my bladder, they had to stop early because of the pain I was in. 4 people went before me and none of them had any problem walking out of the hospital after. I've been checked for all the usual suspects, std's, infections, had an ultrasound and gynecological exam which all came back normal. I know that many people find their symptoms are permanantly worsened after a hydro/cystoscopy. So my question mainly is what else could it be at this point? I've seen so many doctors who think I have ic, none of them have given me any other probable cause other than ones which were checked out. So why do I have to go through another invasive painful procedure? Is it really necessary if they already feel so confident about it that they're treating me, and since I have been almost certain for months that ic was what was wrong with me? It just seems that everything else has been ruled out anyways. With my already fragile bladder, I'm really trying to make sure I don't have anything done that makes it worse.

[leelee88]

It never hurts to get a second opinion. And whatever you decide just remember it is your body! I have mixed feelings about the Cysto/Hydro. Some say it has been a lfe savor for them and others say it did nothing and some say it has made them worse. So it is completely up to you!

I was one that was not helpd by it at all, But at least I know without a doubt I have IC..And now I will not go on wondering if it could be someting else..So if nothing else it did give me a peace of mind knowing what my Dx was.

[ICNDonna]

I'm one who is helped by hydrodistention; it's your body and your decision. If you're not feeling comfortable with what is being recommended, it may be time to seek a second opinion.

Donna

[elamar]

I am kind of in the same boat as you. Pretty much every test I have ever had has come back negative for anything. Cysto - negative , pst - negative, all my cultures for every disease and std - negative. Even my hydro didn't show much - a few glomerations. I felt worse afterwards. Seven weeks of DSMO instillations were sheer hell. All I can say was staying on a bland diet and cystoprotek has helped me calm things down. I was having terrible urethral pain and Librax has helped tremendously. I just saw my doctor today. We are trying a new regimen - 1 Librax at night, and 1 ditropan in the morning. Urgency and frequency are my main symptoms. It is at a much more bearable level now. I am still having left sided abdominal pain which we can't figure out. I am also getting accupuncture once a week and have started chinese herbs. So I am doing a mix of east-west medicine! I scour these boards for ideas and am fortunate that my doctor is willing to try most anything if it sounds reasonable to her. The only thing she won't do is narcotics. But I can get some pain relief from Ultram. It doesn't completely stop the pain, but makes life more manageable. All I can say is you just need to keep trying various meds to see what works for you. I first thought ditropan didn't work until uping the dosage. Sometimes I find starting at higher doses and slowly cutting back works for me - again, you should check with your doctor first. I hope you get some help for this. Sounds like you should at least be on prosed or urelle to calm down the bladder and spasms. Hope this helps.

[SharonA]

Like what has already been said, this is your decision. The uro who did the procedure to diagnose me had told me that he was pretty sure this is what was causing all my symptoms but that he could not say for sure without being able to have a clear view inside of my bladder. I decided to do it because I had to know for sure what was causing my symptoms. If you are satisfied with what you have been told, then don't do anything you don't want to do.

[mcdoll]

The crazy thing is this is already my second opinion. My first one did an in office cysto only because I asked for a cystoscopy. I went to him a few times and he was never giving me any answers, just sending me back home with nothing. He never even mentioned the possibility of ic to me. Then when I begged him for something to help my bladder he told me to see him in a month and he's give me something to coat my bladder after he tested my urine for the millionth time. I was fed up with that guy and didn't find him at all helpful, since a gp and gyno had already told me they thought I had ic. Finally I went to the hospital because I was getting really depressed about never getting any answers. That's where they decided to start treating me. But now the second uro wants a cystoscopy again, and I just don't feel the need for it. Some patients with ic don't have physical signs on their bladder anyways, but they still treat those patients because they still have the symptoms. So going through another painful (and it seems to be even worse than the in office one ) procedure just for a confirmation of what we're pretty sure we already know just seems cruel to me. It's the kind of thing doctors do because they don't have to live with the pain afterwards.

[NancyB]

Dear Doll -

Have you had your thyroid checked?

Would you mind telling me your age?

NancyB:)

[mcdoll]

Thanks guys. Hearing from everyone when I have questions and worries is really helpful. It's also made me realise that I don't have to do everything the doctors want me to do. I just need to find a doctor who is willing to help me according to my needs, in a way I find appropriate. It is my body and in the end it is my responsibility to take care of it, not my doctors. They may be very well educated, but what they do to me won't affect their lives. I think I just need to keep asking questions and informing myself until I feel confident I'm making the right choices for me. Like the whole bladder removal thing. I know it's a last resort thing, I know most doctors would not even consider it as an option until I'm past the point of no return. But I also know that for me it is a valid option. I don't want to be so far gone by the time I feel better that most of my life has passed me by! For now I'm focusing on going to college next year. I'll have three years to get through with ic and school, I'll try any option I feel comfortable with and in the meantime find a urologist or urogyn who will remove my bladder at the end of my schooling if it is causing me too many problems to work full time. I want my life to be my own, not my bladders. I refuse to accept this lying down, I refuse to keep this diseased bladder until I'm old. Hopefully I'll have found something good enough to keep me going. If not, I know that some people have their bladders removed as soon as 2 years after diagnosis. My bladder is not that important to me. I don't feel like I want to suffer to try and keep it. If I have to see every urologist in Montreal before I find one willing to do what I want, that's what I'll do. Lol, I know to many people this sounds crazy, but I've already wasted a good portion of my life

[mcdoll]

I'm not sure if my thyroid has been checked. I was supposed to go for blood tests just to make sure they weren't missing something, but I never felt good enough to go. However, when I was at the hospital they took 4 vials of my blood, so I'm pretty sure they tested my thyroid. I'll ask my urologist next time I see him, the results should be in my file so he'll know if they did the test or not. Oh, and I'm 22. Young, I know. It sucks to have a chronic health problem as annoying as this one at my age. But it won't be forever, I have to believe that or I wouldn't make it through this.