How many here were dx'd on symptoms alone?

[izazen]

I recently read somewhere on the network that people are sometimes diagnosed by symptoms alone.
Anyone had this done? How about by an Internist? Just curious as it takes so long to see a uro. Its amazing that even in a huge city there are like 50 urolgists in the yellow pages and each one has a waiting list that is months long. Thanks.

[Trishann]

I was told I have IC after a Hydro/Cyst was done. It was very painful for me and I refuse to do other test.

[humpieumpumkin]

Hello:hi:
My uro has been treating me as if hsve ic for about 3 yrs. based only on symptoms. Recently all conservative methoods of treatment have failed so now im having further testing to rule out anythings else, and see the best way to treat me.

[Berkshire Road]

I was diagnosed on symptoms alone. My doctor said I had the most obvious case he'd ever seen. Have any of you seen this questionairre you fill out about bladder habits and feelings? If you have a score higher than 10, you probably have IC. I had something like 27.

Social Security will accept a clinical (symptoms only) diagnosis for purposes of establishing disability with IC. My doctor didn't want to do the hydro bc. he said I obviously have IC and it's an invasive procedure that was not necessary in my case.

[Moonheart]

I was tentatively diagnosed by my GP and then referred to my Uro for confirmation.

Carolyn, I did that test as well, and came up with something over 28 or so. Can't remember how many. Scary how bad it all started looking once it was all spelled out like that.

[L. Thomas]

I was diagnosed with IC based on a pain symptom sruvey. My Urogynecologist feels that the symptom scales are as good an indicator of IC as expensive and sometimes painful test. He mixed me a "coctail" to see what would happen. It happened..the instill worked. In Sept. I had urodynamics (with cysto) for another condition and mild IC was indicated by the cysto...looked like blood shot eyes to me too.

[Mommyof2]

my uro has said my symtoms alone are like IC but I told him I wanted to get the tests done so I had proof to show the other uros who were always telling me its in my head that I was in real pain.

[Berkshire Road]

Yeah -- I saw one uro during my NINE YEAR quest to get an answer on my pelvic pain problem, who told me I had no symptoms whatsoever of IC, and refused to do the test.

And, it occurs to me, I must have seen about 27 doctors during this oddysey, and when I mentioned pain, NOT ONE ever asked me about urinary symptoms.

[lorihoss]

I was dx by symptoms alone. I started having severe pains after a particularly stressful time at work in October of 2006. I called my gyno who had done my hysterectomy back in May of 2006. I was scared that something was wrong. As soon as I started describing to him the pains, he gave me a questionere and told me that he may have missed something when he dx me with mixed incontentience. He started treating me immediately with Elmiron, and had me schedule for a potassium test. 2 weeks later when I had the test, the testing ladies said that my response was immediate to the solution and that I had IC. My doctor gave me some info on it, and then sent me home with more samples of Elmiron. About 2 weeks later after I found this site, I called him and asked for my zoloft back that I had taken after my children were born when I had Post-Partum depression real bad. I now take Elmiron, Zoloft, Enablex, and Premarin. I have some left over darvaset that I take when I start to feel the pain become bad. I have had to change my lifestyle, and am in fact looking into more changes in the very near future. I don't like change, but I feel physically exhausted most days, and I have three small children who are 4, 6, and 10. I am better emotionally than what I was, but I still don't like change. I am learning to balance my time, energy, and priorties better. I no longer do things at a breakneck speed as I now understand I was wearing my body out. But oh boy do I hate change!

[jjt001]

I was diagnosed on symptoms alone -- my IC-experienced doctor said my case was "classic IC." However, I was diagnosed with the newer term "Painful Bladder Syndrome". Not sure if the symptoms-only diagnostic process made a difference in the official diagnosis, or if he is calling it Painful Bladder Syndrome in all new cases.

[evanseri]

I have been diagnosed and treated for IC for 10 years based on symptoms alone. I am too scared (read too many horror stories) and unwilling to pay the out of pocket $$$ expense for a hydro. Traditional IC treatments such as Elmiron and Evail have worked for me so whats the point of having a painful and expensive procedure performed just so some doctor and tell me what I already know.

[sami4]

I recently read a book by a prominent IC physician in the Jackson, Michigan area and he said he only uses symptom diagnosis as the diagnosis has such common elements and the treatment is a matter of trying things until they work. He also said, as does Dr. Moldwin another prominent physician that pelvic floor disorders are very common in a lot of ICers, and when they are treated, the IC often becomes a lot better.
So--everyone does not use the Cysto/Hydro or the Potassium Test route before the diagnose and treat.
Sammi