appt wed: what should i ask dr.?

[tanster]

Hi,

My story is a little complicated, but I am going to get a 2nd opinion from a uro tomorrow, and I'm hoping you can help me figure out what I need to ask the dr to help get some answers and some relief!

I had a severe UTI at age 19 (first one) and was on a long course of multiple antibiotics that led to a yeast infection. After that, I felt like I constantly had urgency/frequency, particularly at night, but no sign of infection. Finally in 2001 (at age 26), I saw a uro that performed a cystoscopy and hydrodistention. The cysto indicated a presence of glomerulations and the uro diagnosed me with IC but didn't prescribed anything.

He was very abrasive and so I switched to a wonderful female uro in the same office. She tried Ditropan and then later Vistaril, I saw some relief but the effect tapered off. Then I went for 8 instillations of DMSO (I saw some relief after the first few visits but again it tapered off). Because my frequency was at night, she gave me sleeping meds (Ambien). The uro began to suspect that maybe it was not IC, so she repeated the cysto and no glomerulations were present. She thought maybe it was something else and performed urodynamics study. That indicated smaller than average capacity but no problems. Meanwhile, my frequency and urgency kept increasing as did my pelvic pain. Then I went to a pelvic pain physical therapist which assisted with the pelvic pain, but no help with the frequency. After that, I noticed that I was started to have retention (difficulty fully empty and slow stream). The uro repeated the cysto and again, she did not feel it was classic IC due to lack of glomerulations, just some inflamed patches. Does that mean I am in remission? Or was the first uro wrong?

My retention has gotten worse and at the same time I've still got urgency/frequency and pelvic pain. I am seeing another uro tomorrow to figure out what is going on. I am just so confused. I don't even know what I should be asking him tomorrow or if there are tests I should request. Any help, advice, etc would be most appreciated. Thank you all in advance and best wishes for a wonderful (and pain-free!) Thanksgiving!

[patricia1]

Hi I am sorry you are going through this. But this is not an uncommon occurance to go from doc to doc to find out what is wrong. I went to 5 uro's, FP and Gyno. Anyways, I noticed that you did not have a PST (Potassium Sensativity Test) done. This is where the insert 2 different fluids into the bladder. One will be just water and the other will be potassium. Should you have IC your bladder will react to the Potassium. If you have postive reaction they will drain the bladder and should insert something to numb the bladder for the time being. It is possible to have IC and not have the glomerulations and some doctors diagnose on the symptoms of urgency, freq and pain alone. Talking to another doctor when you are not sure since you had one say yes and another say no is a good idea. I hope you appt goes well tom.. :grouphug:

[tanster]

Hi Patricia:
Thanks for your reply. I will ask the dr regarding the potassium sensitivity test. I am so confused as whether I have IC or not and if so, what to try next to alleviate my symptoms. I'm particularly confused about what brought on the retention just recently... Thanks again for your reply! -T

[massagedoula]

It seems like a case of misinformed doctors, as nice as they may be. I went through that too... Finally I went to the university hospital and saw an IC specialist. Do you have a university hospital in your area?

[pitchermom]

I understand exactly how you feel. I am going to my pcp again today to see if he will send me to anther uro for a 2nd opinion. I had a DMSO coktail last Tues and have felt bad all weekend. I am sitting here in pain right now and trying to put off taking a loratab and pyridium which is the only meds I have from that 1st urologist. He said he was going to schedule me for the outpatient hrdro but he said he was going to use some kind of medicine whle in there that was like Clorox. Someone mentioned in other thread that this medicine is outdated. He has not done any kind of potassium test or ultrasound to rule out anything. He just said I might have IC. I took about 8 different kinds of antibiotics from May until November. I started when diagnosed with a UTI and then a bladder infection and 1st trip to uro, he said I had spots inside urethra so he put me on more antibiotics for like 8 weeks. I am so fed up right now. I have missed so much work because of all of this. What should I ask my PCP today and the new uro if I get in to see one??

[poetgirl]

Hi there! I am sorry you are having such a rough time with this. Many of us have seen different urologists before finally getting the level of treatment we need. The first thing I would find out is how much experience with IC the urologist you are going to see actually has. It may save you time and disappointment. Second, read all you can in the ICN Handbook about different diagnostic and treatment options so that you can go into your appointment informed and able to ask good questions.

Not everyone with IC has glomerulations, but they usually have some combination of symptoms similar to what you are experiencing. There are also overlapping conditions, such as neurogenic bladder, which can cause retention and smaller bladder capacity. However, that does not usually cause pain -- just urgency/frequency. Some people with IC also have Pelvic Floor Dysfunction, which causes pain and urgency/frequency or retention. I think it's worth having your urologist look into any and all causes so that you can get the appropriate treatment.

Good luck! :grouphug: