Very Confused.....cystoscopy

[DKNY22]

Okay, I know that I have IC. I haven't been officially diagnosed, but I have all of the symptoms and they've been getting worse for 7 years now. It started with frequently urinating to horrible bladder, back, kidney pain, cramps, bloating every single day urethra pain, allergies and food intolerances. The only way I can control my 'bladder problem' is with food and the only food that make it go away almost completely is just meat, fish and rice. Veggetables seem to make me go a lot and retain water and fruit of course kills me....not to mention the HORRIBLE HORRIBLE PAIN that I get if I eat anything processed or junk food. I have also recently learned that I am severely gluten intolerant and allergic to casein (cow's milk). So, of course eating rice and meat only is not a way to live and I finally have decided that I seriously need help and to not give up on my doctor when he seems confused by my issues.

So I've been to 3 urologists. The first one I had to move to a new city so I wasn't with him for more than one apt. The second one kind of listened to me, told me I had 'irritable bladder' and didn't test me for anything and sent me on my way. Now I have a 3rd one who seems to keep putting IC out of his mind even though I keep telling him that I have it and know it and tell him my symptoms again and again and then he agrees but says that we have to prove it for treatment, and doesn't realize that I want this all ASAP and not in a month. Well, today I had a cystoscopy with him. He also dialated my bladder and told me that my bladder was very inflamed but that doesn't necessarily mean that I have IC. He said there were no ulcers. But he also didn't take any biopsies....he just looked for about 60 seconds and that's it. (It was an in office under anethesia...but I wasn't sleeping). Anyway, I have an apt. in two weeks to get a urinalysis to test for infection (even though I've had millions and it's ALWAYS NEGATIVE!!) I asked him if I could get the potassium test next time I see him so I get a diagnosis sooner. I just want to get it over with to "prove" to him that I have it, but he said that if I have an infection, he can't do the potassium test, so that's why we need to do the urinalysis first, and then a week later, IF I DON'T HAVE AN INFECTION, go back for the potassium test -sigh- Fine.........so for the next two weeks, maybe longer, I have to eat rice and meat so I at least feel 'good.' I'm so frusterated.

What are your thoughts on all of this? I know I have IC, I just want some treatment so I don't have to live with pain if I decided to have a piece of fruit and a salad! I'm so depressed and I feel so bad crying to my fiance all the time because he feels helpless and I don't want him to have to worry anymore about me. But I'm worried about me, too. ALso, if there was bad inflamation in my bladder, isn't that an indication, along with my symptoms and history.......isn't that enough to diagnose me? Please help....please give me some encouraging words because I'm about at the end of my rope here.

[TeaselOne]

dkny:

Yes I would be just as frustrated as you!
I can understand why he wouldn't want to treat you with some meds until he is 'sure' (but some docs would be sure based on what he already knows) but it does seem reasonable that he could start you on hydroxyzine at least- it is a very safe, very effective drug- as they say- 'can't hurt'.

Elmiron is safe too but very expensive and does take a LONG time to help.
I can understand why waiting on that might be a good idea.

Waiting two weeks for a urinalysisi I DO NOT UNDERSTAND! That should be an immediate kind of thing- is there something super special about this particular test?

And if you do NOT have an infection they could easily do a rescue instill to calm down your inflammation. Gosh it must be pretty bad if they could see it without a hydro..

I'd bug em until they do something sooner.

good luck

Lynne

[DKNY22]

Hi Lynne,

Thanks for the quick reply. Well, I forgot to mention that he gave me an antibiotic because he said that that's what he does whenever he gives someone a cysto. because he wants to prevent an infection from the scope. Maybe that's why he wants to check me out in two weeks? But the antibiotic is only for a week...I don't know.

Anyway, I know my inflamation will go away with eating my 'safe' foods. I've had enough flares to know that I can make the severe pain go away. The only thing is that when I add in new foods, I get a flare right back. It's such a cycle. That's the reason I've decided that I need professional help because I can't do it on my own anymore.

Also, I have horrible water rentention most of my life. Unless I'm only eating rice and meat. Anything else, even plain veggetable make me retain water. Is this normal? What can I do about this? I gain like 7lbs in one day if I eat anything but rice and meat. Oh, not to mention I get constipated when I eat my 'safe' foods, so I HAVE to add something else in. But then the bladder issues come back. I feel so hopeless these days.

Thanks for any help, even just reading my story.

Danielle

[Sarojini]

It sounds like your doctor needs a little refresher course here -- you DO NOT need to have Hunner's Ulcers in your bladder to have IC. Only about 5% or so of patients actually have the ulcers, as a matter of fact.

I'm sorry this doc is putting you through all of this -- I would be frustrated too! It certainly seems like you should have your diagnosis by now; I hate to know that you are being strung along, feeling lousy the whole time.

I really hope that the next visit is a charm, and either your doc will decide on his own to begin treatment, or you can convince him to do so.

[armslee]

I agree with Jen. I don't have Hunner's ulcers but do have severe scarring in my bladder. Is it possible for you to find a urologist in your area that treats IC? Try looking from this website, you can select from your state. They aren't all listed but it would be a good baseline for you.

Believe me, I went through months of h*ll before I was diagnosed and it really took me being proactive about my healthcare to get to the right doctor! Many times us IC'ers have other symptoms that will really throw a doctor for a loop and they start running around chasing the wrong rabbits if you know what I mean!

Good luck in finding your diagnosis.