TMI! Too Much Information!

[jthmdepp]

I'm finding stuff very hard to process. Through out this form where inserts from articles have been posted, or conversations with medical experts, or just a patient with IC has posted. . . I've gathered that there are many different opinions on diagnosing IC. Some say its pointless to get a cystoscopy or anything because if a person is having symptoms of IC, what else could it be than IC? But other posts say endometriosis, vaginal infections, and other conditions need to be ruled out first because symptoms of thses conditions are very similar. Other posts say that pinpoint bleeding of ulcers on the lining of the bladder must be seen during a cysto in order to diagnose IC, others say that a bladder can look perfectly normal through the cysto yet that person could still have IC. Some say IC is progressive and can get worse, and others say that it will stay the way it is now. I know (unfortunately for all of us) that this condition is still very misunderstood in the medical field, but how do you know what information is right and what information is wrong? Everything I read seems to contradict what I've read else where, including in the patient handbook.

[rosesitty]

jth - unfortunately there is no definitive answer. That's what makes diagnosis so challenging and treatment so difficult. My IC was diagnosed from an in-office cystoscopy (she saw that the bladder looked very irritated) and symptomology. Some people want a confirmed diagnosis, so they go the route of cysto/hydro (under anesthesia) and/or a Potassium Sensitivity Test. Some uros (like mine) don't generally do cysto/hydros for diagnosis purposes, some do.
UTI's, yeast infections and pelvic floor dysfunction can mimic standard IC symptoms, but they're interelated to IC. Obviously UTI's and yeast infections are pretty easy to diagnose. Not necessarily easy to get rid of!
Most people say that IC is not progressive, but that's not always the case. I had IC for 2 1/2 years with really mild symptoms, but since November it's gotten worse. I'm having trouble getting back to my pre-November baseline.
I think you need to find what treatments and meds works for you and work with your uro to develop a treatment plan. I know it's confusing. I hope this helps, at least some.
Stephanie

[Kara Isabel]

LOL!

It is all a bit overwhelming isn't it!? :toilet: I've learned over the last 6 months tweaking my meds and treatments (I'm not healed, but have had some problems with certain IC treatments) That there is nothing set in stone as far as what works for who! It is just so individual and we have to work with our doctors and create the "coctail" that will help ease our bladders!

I've noticed researching and purchasing the IC handbook has been a great help for many of us. Since IC is relatively *rare* and there are many contradictions in the research done, most doctors just aren't sure WHAT to do with us.

AND, other autoimmune diseases often walk hand in hand in with IC, so it just becomes one big process of elimination.

I definately believe that IC can get worse! I had mild symptoms for YEARS and even went through testing for diabetes and MS in my 20's. I had frequency but not this pain level. The pain level has really increased for me over the last 2-3 years......and the doctors thought it was endo! But after the PST test, there is NO doubt in my mind that my bladder is trashed.

Just be patient and focused on finding what works!! I think more times than not the PST and Cysto can accurately diagnose IC, but there is those few times that diagnosis slips through the cracks.....

[vm]

For me, when I was first diagnosed, I stuck pretty much to what I read in the patient handbook. That doesn't mean I didn't pay attention to any anecdotal info, but I listened cautiously to the anecdotal information I read on the boards. I tried to read the guest lecture transcripts available on the site as they contain a wealth of information, too.

Mainly, I had a handful of people on the boards who just seemed to make sense. They were people who remained positive, weren't usually given to hysterics or extreme thinking, and who my gut was telling me to listen to. I soaked up their posts and bounced what they said off of what I read in the handbook and guest lectures.

It is very confusing at first, but it does get lots better. Promise. :)

[patricia1]

I completly understand. Learning and trying to figure out what works for your IC is totally and compelety irrating. That is the hard thing about IC....What works for me, might not work for you or the others and what I used to get diagnosed with might not show up for some one else. Some have had postive results with a PST and show up negative with a cysto/hydro and then the other way around. IC treatments are give and take, try and see if they work, if not go to the next. It is not a disease that can be diagnosed and treat with one specific treatment or procedure. More often than not once you get your IC diagnose you wont get worse, but some say they think it is progressive. I firmly believe this is because it can take years to get a diagnose and by this time your bladder lining is worse than when it started. I can say that yes my bladder is 10x worse than when my symptoms started 9 yrs ago, but since my diagnose in 2001 I have pretty much stayed the same. But my case of IC is consider severe. We are all so different and this is what the hard part is.

[green_the_fish]

I agree that all the information is confusing. I was also very confused at first, and that's what inspired to me to read research on IC. Over time, I have come to my own conclusions about certain things.

Please keep in mind that I am not a doctor and have no medical training at all, so don't take me too seriously.

Some say its pointless to get a cystoscopy or anything because if a person is having symptoms of IC, what else could it be than IC?
Personally, I think that diagnosing based soley on symptomology is dangerous. It could be endometriosis or a vaginal infection, like you said, or it could be severe over-active badder, an STD (especially the human papaloma virus), pelvic floor dysfunction (hypertonicity), eosinophillic cystitis, ectopia vesicae, chronic UTIs, urethritis, or even really weird stuff like tuberculosis cystitis, radiation cystitis, and chemical cystitis.
Because of all the othe conditions that mimic IC, I think you should at least try to get in some diagnostic testing.

Other posts say that pinpoint bleeding of ulcers on the lining of the bladder must be seen during a cysto in order to diagnose IC, others say that a bladder can look perfectly normal through the cysto yet that person could still have IC.
Both are true in this case. From what I have read, 90% of IC patients do have pinpoint bleeding or ulcers on the bladder, but 10% don't. Since chances are that you are part of the majority, I would suggest a cystoscopy with hydrodistention. Personally, I think an in-office cysto is useless.
Anyway, if you are told that the cysto+hydro didn't show anything wrong with your bladder wall, the first thing I would do is ask to see the report, along with any photographs taken of the bladder wall.
When I got my cysto+hydro, I was deliberately kept in the dark regarding the observations made by the operating uro, because he was uncomfortable diagnosing a interstitial cystitis in a 15-year old female. If I had asked to see the report, and read about all the damage, and read my diagnosis right there on paper, it would have saved me about a year of crap. You are also pretty young to have IC, so make sure that same thing doesn't happen to you.
If there actually was nothing visible there, I would go for the potassium sensetivity test. I have heard some say that it's often more accurate than the cysto+hydro anyway.

Some say IC is progressive and can get worse, and others say that it will stay the way it is now.
Again, I believe both are true. For the majority of IC patients, their symptoms will not get worse. However, some cases are obviously progressive. For example, there are certain cases in which the bladder capacity significantly decreases, and bladder removal is required.
If I had to make a total guess as to how many cases are progressive and how many aren't, I'd say 95% aren't, and 5% are. But that's just a total guess, so it's probably wrong.

I would suggest you continue to do research on IC. Keep in mind that there are often no right or wrong answers that work for everyone who has IC. We are all different, and there are always exceptions.

Good luck :)

[jthmdepp]

Thank you all so much for your responsed! It helped me straighten some stuff out in my head a GREAT deal! :grouphug:

[ICNDonna]

I don't have much to add, other than to say I felt it was very important to have a definite diagnosis because my father had symptoms very much like what I was experiencing and he had bladder cancer. When I was diagnosed, it was a huge relief to me.

The best advice I can give you about what to believe and what not to believe is to look first at the verified information, such as you will find in the Patient Handbook. Another excellent source for accurate information is the book, "The Interstitial Cystitis Survival Guide," written by Dr. Robert Moldwin. It's very easy to read and understand.

It's also a good idea to read information in small doses; it can be pretty overwhelming to try to absorb everything at once.

Warm hugs,
Donna

[sadgirl1950]

what about ic and ssdi does it ruin everything