Frustrating appt with urologist

[Precious831]

I'm new here and I went again to see my urologist this morning, only saw the NP. I asked if cystoscopy with hydrodistention can be done. She said no. She said that is how IC is diagnosed but I know for sure there are other ways to diagnose it without getting too invasive right away. She proceeded to tell me again that I will feel better after the hydro. I know people have different responses to the hydro but I'm really not ready for that right now and I feel like I'm being pressured. So today was a waste of $20 again for the copay. This place won't prescribe me meds or anything to help with my pain.

I found another doctor and was told they use the Potassium test for the IC which I am ok with. I can't wait to see this new doc.

Thanks for letting me vent. Thoughts would be great too.

[Holly G.]

I was diagnosed based on my symptoms, my doctor is an IC specialist and he doesn't even do hydros. I had the potassium test done and scored very low, like a 1.5 on a scale of 1-10. I don't blame you though, if he had said he wanted a hydro then I would have really had second thoughts. I have heard of doctors only treating IC patients if they have one. Can you try a different doctor?

I wish you all the luck, I know how upsetting it can be in the beginning, we have all been there. Let us know what happens, don't give up and keep moving forward!!!

[stylnmom]

I got cystoscopy with hydrodistention when I was 19 and didn’t even know i had other options. It was really painful and took me a long time to recover from it. That doesn’t mean you would react the same way, just don’t get pressured into anything you don’t want done to you.

[ICNDonna]

I was diagnosed by hydrodistention and it relieved my symptoms for just under two years. At that time the PST was not available --- and I'm kind of glad it wasn't --- in my particular case, hydros have helped me live a normal life for 34 years now.

Donna

[Precious831]

I'm just not ready and we don't have any family or friends that can help here. Our families live 7 hrs away and I'm worried about the pain and recovery from the hydro. I have a 24 month DD and my husband is gone for work a lot and it's usually just my daughter and I that's home. I can't afford to be in so much pain and be loopy after the procedure. Anyway, I hope this new doctor will be more understanding.

Thanks

[mary124]

The hydro was how I was dx back in 1992; this was after everything else was done to me that you can think of. In 2004 started having hydros on a pretty regular basis- from 1992 to 2004 had DMSO treatments on and off.

[Goldfinch]

For my money, finding a doc you are comfortable with and trust, and who is a "good fit" for you is equally important as finding a doctor who believes x,y or z.

I hope your meeting with this new doc goes well. Most of us here are been to more than one uro before finding one we want to work with.There are many ways to diagnose and treat IC, but the most important thing is to find a doctor who really wants to relieve your pain and who understands there is is no "right way" to treat every case of IC. Follow your gut instincts, follow the diet, and read everything you can here about IC so you will be your own best advocate.

[beautifulshades]

I'm new here and I went again to see my urologist this morning, only saw the NP. I asked if cystoscopy with hydrodistention can be done. She said no. She said that is how IC is diagnosed but I know for sure there are other ways to diagnose it without getting too invasive right away. She proceeded to tell me again that I will feel better after the hydro. I know people have different responses to the hydro but I'm really not ready for that right now and I feel like I'm being pressured. So today was a waste of $20 again for the copay. This place won't prescribe me meds or anything to help with my pain.

I found another doctor and was told they use the Potassium test for the IC which I am ok with. I can't wait to see this new doc.

Thanks for letting me vent. Thoughts would be great too.

MOST definitely get a 2nd opinion. Usually with doctors/URS expecially if this doctor didn't even see you just the NP, yeah go somewhere else. Usually you have to beat down many men to find an actual URO that understands, and knows what he is doing. It took me 7 months to get diagnosed. I went through one other URO that was caring at first, saw that one of my kidneys was inflamed ( no clue why) was hospitalized for 3 days, I felt better for a week before the symptoms came back, I told him that, he didn't find any infection and told me that is was all in my head, and a slew of evil ER doctors. Finally I found a URO that was an IC specialist, I was diagnosed on symptoms alone, then confirmed when he peeked into my bladder UGH I will not let anyone look at me unless they are MY understanding doctors. because no one else will take the time and actually look up other things that they cannot find like uh IC! Anyways, yeah a lot of IC people had to go through many doctors to find one that is smart enough to DX and take care of you. i am sorry yours going through this, but no worries you will be taken care of soon. Make sure you are your only medical advocate. Don't be afraid to tell doctors how it is. I send warm hugs and good luck hun :D

[Precious831]

Is this customary though in this field...I mean to see the nurse practitioner and not the actual urologist? The new doc I'm going to see in 2 weeks has a similar practice. The person I spoke to on the phone said I will meet with the nurse practitioner for the 1st appt. Then the 2nd appt will be to diagnose it, like do the Potassium test.

From reading everyone's post in different threads here, it sounds like you guys see the actual doctor which is what I'd like to do. So do you think this is typical or not? Could it be just in Kentucky that they do this? I'm originally from Michigan and moved here 2 yrs ago and I can tell you I've been to specialists there (for something else) and I saw the actual doctor and not a nurse practitioner.

Thanks.

[musiclover]

When you go in, you should say if you can't see the doctor, you would like to reschedule. It's your money. They can only make you reschedule so many times. How annoying, I would be so mad. Anyway, my doctor rx'd me on symptoms. He doesn't like to start with hydros.

[sissygirl]

I am in Indiana and I saw the actual uro for my first appointment. He did examine me and poked around, saw vaginal issues too and got me in to see a GYN right away so that saved me time, money, and much anxiety to not have to see a "gatekeeper" first.

An NP can take your history, do a urine culture etc so maybe that's all they want to get done in a first visit--it probably saves them money and uses the doc's time for the diagnostic procedures etc. You can try asking to see the uro first, but if they say no you might have to decide whether the uro is good enough to be worth the wait.

If you do see the nurse, be a real squeaky wheel about getting right in to see the URO. And you may have more time with the nurse, so you can pepper her with questions and see how much the practice treats IC, how available they are for phone questions etc. A good nurse can be a great ally--mine on the other hand took a month to get back to me to tell me in fact they did find bacteria in my first sample, then never called about my second sample :cussing:

BTW, when I was pregnant, that was how my OB practice was run--see nurse for first visit. It must be more efficient and economical for the practice, even if it is less than satisfying for the patient.

[KristyKay]

I also saw the uro on my first appointment. In fact, we sat in his office and talked for 30 minutes before we proceeded to the exam room, where he proceeded with the PST Test. He spent a total of 2 hours with me that first appointment, listening to all of my concerns and never made me feel like he was in a hurry. He's the best!

I will say that his nurse was amazing also. She assured me that they treat lots of people with IC and that everything would be fine.

My particular uro here in Southern California doesn't do hydros right out of the gate - too invasive. I have a very mild case of IC and the PST wasn't bad for me, just my experience.

Good Luck!
Kristy