Question for anyone who has been diagnosed

[earthlady]

I'm curious to see if anyone on here has been diagnosed on symptoms alone, or without inflammation appearing on the bladder wall. Is anyone currently being treated for PBS/IC without having had invasive diagnostic testing? Thanks to anyone who can reply.

[greeneyes]

Diagnosed with no inflammation

I was diagnosed several weeks ago, however I did have a cysto done but no inflammation was found, 3 days after the cysto I was in severe pain and my uro started instills which has been a great relief for me. I'm not much help since this is all new to me as well, the only other med I take for IC is Vesicare.

[sailawaygrl]

I know that we have had members in the past that have said they were diagnosed on symptoms alone. I was diagnosed with the potassium sensitivity test, it wasn't too invasive, as soon as I made a slight gesture of pain they immediately drained the liquid and put in an instill. I had a hydro later on.

Why do you ask? Are you worried about further testing? Some tests are necessary to rule out other causes but beyond those tests there are Drs that will diagnose on symptoms only.

Sandra

[cmclien]

I was diagnosed based on symptoms and he did do an in office cystoscopy and saw no inflammation, in fact he said my bladder looked really healthy and I was like "then why does it hurt all the time????"
That isn't stopping him from treating me and he labeled it mild IC and offered instillations but I wanted to try the oral elmiron route first. I think the bottom line for any doctor should be to treat symptoms if you have them, what does it hurt? It may do nothing or it may help the patient a ton. I don't understand witholding of treatment for those reasons.

[earthlady]

My doctors all seem to to be hesitant in diagnosing me with IC/PBS even though I have all the classic symptoms. My cysto with hydro according to one uro showed a slight inflammation but otherwise normal bladder, the second dr. felt it was more a pelvic floor muscle problem, and the third felt the cysto and hydro were consistent with normal findings. So - I was just wondering how many people were actually diagnosed on symptoms alone because I can't figure out why my doctors have hesitated so much in the diagnosing. I am currently being treated with medication but have never been actually counseled by any of them regarding diet or exercise etc. All the information I have gotten is due to my own research here, current books, and other places. I am in an area close to medical centers, university research centers, etc. so I can't figure out why the drs. here are afraid to diagnose. Seems very odd to me.
Thank you all for your replies. I appreciate it.

[sailawaygrl]

Many Drs don't put a lot of stock in the IC diet but a great many ICer's feel differently. That might explain why they haven't shared that with you. What meds are they treating you with? You say you have seen 3 uros, have you settled on one and are getting treatment for IC?

It is good that you are so proactive about your health and researching ways to help yourself. A good place to get a lot of info is under the Patient tab at the top left of this page, you will find an abundance of information there that can help you.

I hope you have some good results soon,

Sandra

[earthlady]

I'm currently on Gelnique trandermal gel and it seems to be so far very effective. The uro I have now is new so I guess I will see in the next visit whether I will be staying with him. He has recommended the PTNS as a treatment but not sure if this will help with pain, or only the frequency. I went straight to this site for info as soon as I had symptoms, so I am familiar with the diet and current research that Jill has kept us informed with. I have the books on healing pelvic pain and The Better Bladder Book. Gee, now that I think of it, why did I need the Uro? Seems I've done all the research and diagnosing myself! I should just go in there and tell him what I want.

[penneyjo]

Yes, I was diagnosed without any invasive testing. I had classic symptoms and was going through menopause at the same time. I went completely on the diet and found a nurse practitioner who specialized in all women's things so she was great and helped me with everything all at the same time, truly a godsend. If I stick to the diet, I don't have any problems unless I get really stressed.

[earthlady]

Thank you for your response. Seems there are a lot of people diagnosed on symptoms only.

[ICNDonna]

I was diagnosed by hydrodistention with biopsies after having other tests to rule out other potential problems. It took several months to be diagnosed because of the other testing plus trying various medications. I did stick with the same urologist --- every time a physician change is made, it's back to step one --- and he treated my IC for thirty years before he retired.

Some doctors are willing to diagnose based on symptoms alone --- and if both patient and physician are comfortable with that, I don't see it as a problem.

Donna

[earthlady]

Thanks Donna. I guess my nerves are getting to me lately. I haven't been very patient with all this. You are right about each time you see a new dr. it goes back to square one on the testing, so I will give this one more time.

[ICNDonna]

Just remember that an IC diagnosis is made partly by ruling out other possibilities so it can take some time to diagnose. If you have a doctor who makes you feel comfortable and is willing to stick with it until you know, I think that's a huge plus.

Hugs,
Donna

[earthlady]

Maybe I should be glad he's willing to exhaust all other possibilities to make sure there aren't other things causing the bladder problems.??? I guess that would make for an accurate diagnosis. I think I need to calm down. This condition is the most anxiety producing medical thing I have ever had- and I've had some doozy medical things in the past, but this is by far the most confusing.

[ICNDonna]

I agree. My worst time with IC was waiting for a diagnosis.


Donna

[sailawaygrl]

I know exactly how you feel about the frustration, I started seeing the Dr's in Jan and got my diagnosis on Feb 12, 2008. That really is a short time to diagnosis but all the tests were driving me crazy. Every Dr visit I just wanted them to tell me WHAT this was. After all was said and done though I had confidence in my diagnosis.

Hang in there, we are here for you.

Sandra