First Urologist appointment tomorrow-have questions

[indiana]

[ :yikes:

I have my first Urologist appointment tomorrow at 2 p.m. I am supposed to have the potassium test as well as the Cysto? Where they put in a catheter and put water into my bladder. I was told that since this is done in the office that no pain meds will be administered and I will be awake. I've read a lot of your stories and advice and get the feeling that it just depends on us as individuals as to how painful it is.

I'm a little concerned though and confused and was hoping someone could help me understand better or give me some pointers for my appointment tomorrow.

First, I've read that the only way to determine FOR SURE if you have IC is to go under and do the cysto with hypertension. Is this true? If so, why should we go through the possibility of painful procedures in the office if going under is indeed the only way to determine for sure? Please let me know what you all think.

Second, If I do go through these procedures tomorrow, any advice on how exactly painful it is? Any tricks to help stay calm? My husband is going with me, which will help. He's been wonderful through all of this. I'm still not convinced that I have IC. I read so many of your stories and pain is a big symptom.......I have to admit I usually do not experience pain. Mostly urgency and frequency. Is there anyone else out there like me? Oh, one more question..........does anyone experience lower back pain? More of a dull ache? I have a degenerative disc in my lower back and have been dealing with it for years, so I'm not sure if it is just my back acting up or if this is also a symptom of the disease. Also, is this catogorized as a disease or a disorder?

I guess you can tell I'm pretty knew at this stuff. Thank you all for this site. It is a wonderful feeling to know that someone out there understands.

[twiggy]

Since I am new to this, too, I am not an expert. I can tell you that the scope doesn't cause me pain. It is a very small device used to look at the inside of your bladder. I get a lot of back pain, but I don't have the greatest back either.

I am sure others will be able to give you better advice.

Some people experience pain with distending the bladder and others do not. Do they expand the bladder with a potassium test? (Don't know, I didn't have a potassium test just hydro-distention of the bladder.) I have had a cathetar five times now and it never hurts.

I'm not much help as I am new to this too. However, I wish you the best. I am glad your husband is going with you. It's nice to have someone there to ask questions and help you remember what the doctors says.

[Am2974]

I wish you all the best tomarrow!:thumbsup:
I too have no pain, just frequency,urgency and a dull back ache. I have yet to make a urologist appt. but need to soon cause its really starting to get to me. The only relief i get is when i start my menstrual cycle. What joy is that! lol
Sorry i can't give you any advise about your tests, but hope you will come back and post how your visit went and keep us updated on what you find out!Your sure not alone!
:hi:

[Sarojini]

Hi Indiana,

First off, good luck at the uro tomorrow!! :grouphug:

As for the Potassium Sensitivity test, they'll catheterize you and instill two solutions into your bladder. Usually they put one in, drain it, and put the second in. One of the solutions will be either plain water or saline, and the other is a dilute potassium chloride solution. If you have IC, you'll react either with pain or with extreme urgency when the potassium solution is instilled. Don't worry, though, if you react your doctor will immediately drain your bladder and instill an anesthetic solution in your bladder to make you more comfortable. :)

As for why they do an in-office cysto, you are right that the gold standard for diagnosing IC is the cysto/hydro under anesthesia. In fact, most IC bladders look completely normal in the office! However, many uros like to do the in office kind anyway -- it's basically to look for any kind of structural abnormalities in your bladder, for example, polyps, tumors, congenital deformities, and the like. It's just a quick way to rule out obvious causes of your symptoms. If nothing is found during the in-office cysto, then your uro may well schedule a cysto with hydrodistention under anesthesia for a later date.

I've actually never had an in-office cysto, so I can't really offer any experience. However, I do find that whenever I am cathed, it helps to relax as much as possible... and if you're allowed, try taking a Pyridium beforehand to soothe your urethra. Your doc may also give you something to help you relax, too.

Again, good luck :grouphug:

[VickiB]

Hi Indiana,

My first visit to my Uro they did an in-office cysto and the potassium test. Like Jen said, the cysto doesn't really diagnose IC, but it gives them the opportunity to look for other possible defects in the bladder. It was actually kind of interesting because the Uro put the screen where I could watch as well, then explained what we were looking at and why.

My experience with the in-office cysto wasn't as bad as I was expecting it to be. Admittedly, I was kind of scared because my bladder can be a bit of a grouch! It wasn't pleasant by any means, but never to the point I couldn't handle it. Though I did have to hold my breath every now and then. The cathing was the most unpleasant part.

I'm sure you'll do fine! Good luck with your appointment and I hope it leads to some answers for you.

Vicki

[ICNDonna]

The cysto done in the office does not usually diagnose IC, but it's a part of ruling out other possible causes for your frequency. I have had several office cystoscopies and they are, for me, uncomfortable but not horrible. I find that if I concentrate on relaxing it makes it much easier for me.

I hope your visit goes well.

Warm hugs,
Donna

[theclownster]

Hi there! Good luck at your first uro appointment. I hope you find it to go better then expected.

One thing I have learned through the whole diagnosing process is we all respond differently. I hope that you have a pain free visit tomorrow. I have had two in office cystoscopies. Both of them were extremely painful for the catherization part - once the scope was in it was fine - I just want to reassure you that both times it only lasted about a matter of seconds as neither uro found anything. So, there was pain, I yelped, and it was over. There was some significant discomfort for about a day afterwards and I needed pyridium plus to get through. My symptoms flared for about a week, but all in all it was not that bad. I think my anticipation was far worse then the actual procedure.

I too have frequency and urgency as primary symptoms. Additionally I always used to have pretty moderate lower back pain and occasional pelvic and abdomen pain. Extreme pain is not one of my primary symptoms - which I feel lucky. However, there are days that I do have some pretty significant pain. Now that I'm stabalized on meds I feel a lot better. My back pain comes and goes - but I'm starting to have more and more pain free days. I still struggle with frequency at times, but all in all I think I'm doing pretty good.

Please keep us updated and let us know how your visit went.

Take Care and Good Luck!!!
Jennifer

[classics]

Some of us have a terrible time with the catheter, some do not. But my advice to you, if it hurts too much have them start over using lidocaine and a pediatric catheter (smaller size).

The 3rd paragraph you wrote would be a good question to ask your urologist when you see him. I'm not sure why the doctors do the office cysto instead of in a hospital with anesthesia. Do they not know that the hydrodistention with a biopsy is the "golden standard?" Or perhaps they want to save themselves time by not having to schedule surgery or maybe save the patient the expense of treatment not covered by health insurance 100 percent in a hospital or surgery center.

I cancelled a potassium chloride test and had my uro schedule me for a cysto/hyrdo/biopsy under general anesthesia, not only because I felt it was a better way to diagnose IC but because I had a lot of pain with the catheter during the urodynamics test.

[indiana]

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Hi Ladies,

Well, I lived through the appointment with help from my husband. I was very nervous and tense which didn't help. I couldn't handle the catheter, one nurse tried 3 times and finally had to go get a lady who got me on her first try because she's the "expert". It hurt like no tomorrow and I can confidentally say that I will never have one again unless they agree to give me a sedative or if I have Valium to take beforehand.
The potassium test is what did it, didn't pass.

:toilet:

They have put me on 10mg of Evavil and told me just to take it at night because it could make me sleepy. Does anyone take it during the day?

I'm also on 100 mg of Elmiron. My dr. told me that this will take months to start working, it is a very slow process.

She wants to see me back in a month to see how I'm doing. I am finding myself a little worried about the "antidepressant" part of the Evavil. Has anyone had adverse reactions to it? Maybe it will do me some good mood wise but I've never had to take anything like that before.

I've been on Valium before for my back, does anyone know if Valium would be a substitute for Evavil? Probably not. I guess I just rather take something I know than something I don't.

Anway, I'll be on her a lot now. Thank you for all your support, I'm sure I'll need lots of it to come in the future.

P.S. My doctor says she doesn't see a need for the cysto with hydrotesention.

Indiana

[VickiB]

Glad to hear you survived your visit! Are you having any pain or soreness as an after-effect? For me, the cathing was the worse part, but I don't think I was very relaxed, so I may have been part of the problem!

I haven't had any problem with taking the antidepressant, except for the sleepiness that lingers into the morning hours. My Uro wanted me to work up to taking 75mg at night. I made it to 50, and told him I'd prefer not to take a higher dose. He said "okay". I've heard the drowsiness often goes away once your body adjusts to the med,...Not for me!

I also didn't go beyond the potassium test for diagnosis. I'm sure it's in part because my insurance wouldn't cover it, and we were pretty confident in the diagnosis by symptoms alone. Fortunately for me, my flares are almost entirely diet related and I've become pretty good at knowing what to stay away from. Not that that helps,...I'm in terrible pain right now due to lack of control when you put salsa in front of me! AND I KNOW BETTER,...I KNEW IT WHEN I PUT IT IN MY MOUTH! I need a keeper!!!!!!!

Anyway, sorry it turned out to be IC, but glad to have you with us!

Vicki

[Annie2]

Indiana,

I am sorry to hear you have IC. Now that you are diagnosed, however, you can begin treatments and, hopefully, will quickly find a treatment that works to bring relief to you.

I, too, was diagnosed with the PST (potassium sensitivity test). My urologist prefers to reserve the much more invasive Cysto / Hydro as a possible treatment option if less invasive methods fail to bring relief. Of course he does insist on an in-office Cysto and does other tests including cytology to rule out cancer and other possible causes for these symptoms. More urologists are accepting the PST (along with tests to rule out other causes) as a definitive diagnostic tool for IC.

Treatment with low doses of Elavil is very common. Elavil is a tricyclic antidepressant. When given in relatively low doses, for many, it is effective in blocking pain and relaxing the bladder. The dosages used for this purpose are not the same as when this drug is used as an antidepressant. Elavil has worked wonders for many ICers. We are all different in our reactions to medications so you will have to see how it works for you. Valium is often given for anxiety-related disorders and, because it does sometimes relieve muscle spasms, is occassionally Rxed for IC patients. You will probably want to discuss all the possible meds and treatment options with your urologist at your next appointment. I would highly recommend you read The Interstitial Cystitis Survival Guide by Robert Moldwin, M.D. It is available in the ICN Shop and is an excellent resource guide for IC patients as it thoroughly discusses the disease, medications frequently used and treatment options.

Did your uro discuss the IC diet with you? If you have not already begun the diet, I would suggest you might want to start immediately. You will find info on the diet on the ICN at http://www.ic-network.com/handbook/diet.html Many of us find following the diet is the greatest tool we have for controling our symptoms.

Now that the diagnostic stage is behind you, I hope you will quickly find relief through treatment!

:grouphug:

Annie

[theclownster]

Hello! I'm glad you survived the visit. I'm sorry to hear it was quite painful for you. As for the Elavil. I only take it at bedtime and after being on it for a while it has helped significantly. I was worried about the antidepressant component that you mentioned when I first started taking it too . I'm glad I went ahead and started taking it. I will say when the doc put me on new meds (3 at once) I decided to stagger when I started taking them to take them one at time so that I would know which one I was having a reaction to if I didn't like the side effects. I'm not sure my doctor agreed, but it made me more comfortable. In the end, it was a blessing because one of the meds caused my symptoms to increase. I tried taking it at two separate times for a week and had the same reaction - thus my doc took me off of it.

May your new meds begin to help you.
Take Care!
Jennifer

[Katrina]

So very sorry you have IC. :grouphug: :grouphug: :grouphug: