Just had potassium test yesterday...

[carmari73]

And boy, did I react. Instantly. About 2ccs of the stuff, and I was ready to sell one of my children for mercy! Thankfully, the treatment rinse immediately helped.
I go in today for a second treatment (I was recommended to do 3 this week, followed by once a week seven more times). I'm still in the "what the heck is this IC crap?" stage, trying to process all the info, reading posts here, nodding my head tearfully in comisseration...
My test performed by a nurse practitioner partnered with my OB (who also does a lot of urological work, surgeries, etc.) She (the NP, who also has IC) told me that I can follow up with a urologist for the scope procedure, but that everyone she's performed the test on has had IC, so I might want to just go ahead and start Elmiron. Yet, I'm reading here that it's a good idea to really find out the extent of the damage before settling on a treatment, and that there are apparently many other things I can do to make this livable.
So I guess my first of many questions is, to scope or not to scope? Any input is greatly appreciated. :help:

[Zygala87]

I guess I just don't understand. The potassium test ,to my knowledge, is just that: A test. Why would they keep doing this to you? A hydrodistention will show the Doctor just how bad your bladder is. My opinion only but I would NEVER let any Doctor do the HYDRO in their office. I've had two and they helped me but I was in the hospital and "OUT". It is your body don't let any medical person hurt you just because they think it is the right thing to do. Read all you can on this site. I personally wouldn't let them do the potassium test which they wanted to do. I said lets go stright to the Hydro. He took pictures and it was a bloody mess. I stay on the diet and Elmiron has worked for me after 3 month. Some people don't see a change for a much longer time. I am having more very good days then bad. Dr. Moldwin's survival guide has many answers. If you don't have it now it would be a good idea to buy it. I am sure NO EXPERT and I hope others on here can give you better advice. I care very much about you and hope you are feeling better soon. Hugs, Ziggy.

[carmari73]

I Why would they keep doing this to you? A hydrodistention will show the Doctor just how bad your bladder is.

Sorry, I wasn't clear; it's not more potassium they're doing. After reading these forums further, I believe it's called the 'instill' process... the solution of heparin, saline, and something else I think, that soothes the uclerations. But I do think when I'm in today, I will ask for the hydroscope procedure. They do that under anesthesia, correct? I have bad luck with anesthesia :(...
After a pelvic laparoscopy for endometriosis in 2000, my bladder (or probably my urethra) decided not to let me pee. I informed them that I desperately needed to go and nothing was coming out. They cathed me and low and behold, 1500 ccs of urine (no misprint, if I'm lyin', I'm dyin') come out. To quote the nurse, "Yep, you're going. (pause) Hmm. You're still going. (pause) GOOD GOD, you're still going!" Not a good bladder day (or, for the chair in the waiting room that I dug my nails into as I waited to be called back). Similar episodes have happened each time I've given birth, in '01, '05, and '08. My personal record is 1800 ccs. Not exactly a bragging point, just an FYI. That's the short story of what got me to this point.
And thanks so much, Ziggy for your caring support!

[ICNDonna]

While there's still some difference of opinion in the medical community about the validity of the potassium sensitivity tests, many doctors consider it to be accurate and are diagnosing based on that test alone. Some doctors will do a cystoscopy in the office, but it does not include distending the bladder and will not usually diagnose IC. I was diagnosed 34 years ago --- at that time hydrodistention was how IC was diagnosed. I had spinal anesthesia in a hospital operating room.

Description of the two procedures (cystoscopy and cystoscopy with hydrodistention) can be confusing since water is put into the bladder for both procedures. When the bladder is empty, it kind of collapses like a balloon with no air --- the water is instilled so the inside of the bladder can be seen --- and bladder capacity is measured at the same time. During the cysto with hydrodistention, the bladder is actually stretched --- this procedure requires anesthesia.

If you're feeling concerned about your diagnosis, I suggest you see a urologist. I'm sure you will be able to have your current doctor's office forward test results so you shouldn't need to repeat tests.

Donna

[ScrabbleMom]

I would suggest you go to a real bladder doctor-- a Urologist. I had a quack ob/gyn trying to do these things you mentioned to me; I refused. Then I went to a urologist who said that those silly tests prove absolutely nothing and they only make people with IC worse. He stopped my symptoms with a little pink pill (amytriptoline). I have to have a cysto just to make sure its not cancer, but at least he didn't torture me with meaningless procedures. Good luck to you!!!!!!!!

Please don't trust obgyns with bladder issues-- they are not the experts on this and they are not up on the latest info!

[nottoc4]

I go to a UroGyn and he diagnosed me by process of eliminatiom,an IVP and a potassium test. This after I had gone to a Urologist for 2 years and all he would say is your getting older,not uncommon for women you age to get UTI"S.and tried me on 4 different overactive bladder meds.

I took Elmiron by mouth for 4 months but developed a tummy problem and could't take it anymore. In the beginning he gave me 9 instillations with Elmiron and a variety of other meds. They did help me tremendously. Since I can't take Elmiron by mouth, I just started a second round of instillations and am practically pain free every day.I only get up to pee once or twice a night and have great staying power durig the day.He is wonderful and has let me try different meds that help others here. He may not be an IC expert, but he listens and does all he can to help me. Jo

[ScrabbleMom]

Based on what my uro said, it's a little disturbing to me to see some doctors not recommending a cystoscopy in someone having IC symptoms. My doctor said that IC symptoms warrant cystoscopy to rule out cancer, and cystoscopy is the only way to find cancer. Furthermore, he thinks the potassium sensitivity test is useless since it can cause pain in someone with a perfect bladder.

Ultimately, everyone gets to choose the doctor they're comfortable with (thank God we're not under socialized medicine yet)-- I'm just passing along what my doctor said just in case someone needs the info/a different perspective. :) Hugs to everyone dealing with all of this!

[VickiB]

If you haven't noticed already, even doctors don't agree on what's the best method to go about diagnosing IC, much less agree on treatment afterwards! My suggestion would be to learn all you can about IC, the common diagnostic procedures, and various treatments, then talk with your doctor and go with your gut feeling. (It's possible your gut feeling will tell you to find a new doctor!)The handbook contains lots of info: http://www.ic-network.com/handbook

My feeling is that a doctors specialty area is nowhere near as important as their willingness to listen, learn, adapt, and successfully treat their patients. I suppose a urologist with those qualities would be best of all for us with IC, but sometimes one can do better to compromise.

I was diagnosed based on history of symptoms, multiple tests which excluded other possible causes, and finally the PST. The hydro/distension was offered but I declined. In the end, I am very comfortable that my uro and I made the best decision for me.

Vicki

[carmari73]

Thanks to all of you for your responses.
Today, I had my 3rd instill of the week, to be followed with once a week for 6 more weeks. These are making a somewhat of a difference. Each time, there's been a bit less in my bladder that I couldn't empty.
I plan to start Elmiron as soon as my mail order pharmacy gets it delivered. As for the diet... well, I have a crappy attitude on that so far. :headbang:I'm very adventurous with food, with a love of all sorts ethnic stuff & I love trying out new things, esp. spicy, tangy... and chocolate, of course. The idea of missing out on all that stuff for the rest of my life saddens me. I will try Prelief for that.
I've not ruled out seeing a urologist and a hydro/distension, but I think I will take things one step at a time. The second instill I went in for, I'd read up on this site, and asked a lot of questions. I was told, "This is really just going to take some time before you feel better." I know that may sound like something that might tick some people off (and it would if I didn't know this woman as well as I do). Her point was not to expect an overnight miracle, and to give each thing I try an honest chance to work (or not work) before trying something new. I really would prefer a magic wand, though. LOL!
Thanks again for the warm welcome and heartfelt advice. I plan on sticking around. :hi:

[VickiB]

Boy, pass that magic wand my way if you find one!

It's not uncommon for IC treatments to take some time before one feels better. That's a hard thing to hear and accept, but for many that's how it is.

The diet can be tough, especially in the beginning. I know my first thought was kind of like mourning for the flavors I feared I'd never have again. But that's not at all how it worked out. I did go through a period of time where my diet choices were very restricted. And I felt so much better! Then I began to experiment, adding food & drink back in one at a time so I could gauge their effects. In the end it turns out there are actually not that many foods I must totally avoid.

Hang in there, it gets better!

Vicki