Cytoscopy

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Hello, 

I'm planning to see Dr Brizman soon but first of all the NHS have finally offered me a cytoscopy. I have it scheduled in for early December at the moment.

I'm kind of scared though. Could it make it worse? It's just investigative rather than stretching or anything but I'm pretty apprehensive about it. Equally I understand the need to make sure it's nothing else instead of IC or actually get a diagnosis. My dad died of bladder cancer quite young so I think that's why they decided it was best to double check, but I'm kind of young to have that.

I already had an ultrasound which showed that my bladder held 404ml which the doctor said was fine  but doesn't sound like much. I don't know how they can even tell that from the ultrasound anyway! So precise as well - exactly 404!? What!! Thanks to having to measure what I drank and how much came out when I first got this I think I hold more than that anyway... who knows.

Sorry I'm rambling a bit - not sure what I'm after here really, some experience of what happened to people with cytoscopies I suppose and any advice?

 

Many thanks,

Jess 

 

researchnerd's picture
researchnerd

my advice is: do NOT do that.  no need to have the establishment up in your lady parts!!!  your results won't help dr. b at all.  so, unless you want to get disability or other benefits, I would say forget it.  

Rachel Ann's picture
Rachel Ann

 

Hey Jess, I had a cystoscopy done a long time ago.  I had to have it done in the hospital under local anesthesia because it would have been too painful to do it in the doctor's office without anything.  My doctor also did the hydrodistention (which I know you said they would not do with you).  I was in a lot of pain afterward for a couple weeks until I recovered from it.  I could barely pee because it hurt so badly, and my doctor didn't give me anything for pain.  He just told me to take Tylenol.  Looking back, I should have demanded more pain relief, but I thought that my doctor knew best.  Oh how I have learned what to look for in a doctor!  To my credit, I did find an excellent urologist shorly after that experience. I would try to avoid having it done if at all possible.  If you are only doing it to confirm IC, if those are the only symptoms you are having, don't do it.  I would only do it if you really think you might have bladder cancer like your dad, if you are having symptoms that are not typical for IC but typical for cancer.  Research other options for detecting bladder cancer before doing a cystoscopy.  It is very painful and could potentially be harmful. I've had IC for 12 years and went the western medical route for about 10 years before I started with Dr. B.  The cystoscopy I had done 12 years ago did not need to happen.  The urologist who did it was ignorant of how to treat IC patients (which is typical of most urologists).  When I found an excellent urologist who was well-educated in treating IC and actually specialized in it, he gave me the option of doing another cystoscopy if I wanted to, but said it wasn't necessary.  I did not do it because it was not an experience I wanted to have again! If you come to the conclusion that you absolutely need to have it done, make sure you find someone highly competent to do it.  It is no small thing, and even though the medical community acts like it is no big deal, it is for someone with IC.  

Lisa Ann

 

blondy's picture
blondy

Allowing mine done is a big personal regret of mine.

selichan's picture
selichan

Hi Jess,
I had mine in December 2010, under local anesthasia cause it was too painful to for me to do all the urological tests to diagnose IC. I was scheduled to see Dr. B in January and I read on her posts that the cystoscopy wasn't a requirement to start treatment with her. I did it anyways... I think mainly because I was so freaked out, in pain, and I wanted to hear so badly that i don't have IC. Ironically, cystoscopy is just another one of those eliminative tests, that the doctor will tell "you probably have  mild IC", which now to me was completely unnecessary to go through all the pain, the fear, and the cost of surgery!!!
I HIGHLY would recommend you NOT to do the cystoscopy if only for ic diagnosis, they are really not necessary, the tests don't confirm anything. Since western medicine doesn't even have a solution to this problem, and they understand so little of it, i would have saved my money to use towards my treatment, if it was today.
Good luck to you, you are going to be in good hands with Matia. :)

Jess's picture
Jess

Thanks for your replies everyone, don't want to make anything worse so ill cancel.
I've booked my appointment for the 5th December, looking forward to it :)