Newly Diagnosed with questions and concerns

[VRoberts]

Hello! I was diagnosed in May 04 with IC. I too had unexplained urinary tract problems from the time I was 19. I believe the IC actually surfaced and stayed about a month after I turned 40. Since being "officially" diagnosed I am on medicines that alot of people seem to be taking which is atarax, elmiron, as needed bladder installations, and just this month elavil. I had the Hydro Distention done in Sep. However, I do not have a small bladder, I have right the opposite what the docors and the PT call a sloppy or floppy bladder. I have a bladder capacity of 1700cc. The doctor did not find the "classic signs" of IC. She told me even though the "classic signs' are not there, it does not mean I do not have IC. She said 20-30% of patients diagnosed do not have the pinpoint bleeding or the ulcers. Or she said she could be wrong in where I am in the progression, and actually in the starting stages. They have now added IBS and Plevic Floor Disfuction to the list though from other problems I am having. My question is is there anyone else out there they didn't find the taletale signs of IC like pinpoint bleeding etc, and they were told they still have IC? I do have the burning, urgency, frequency, and the low grade pain almost constantly now. Pain was the 7 days before my cycle in the beginning. Now is almost non-stop. I do have an outstanding doctor and she is very sympathetic, However she does not believe in narcotics for pain management which somedays I struggle with. I am on the IC diet, have found a few items I can't have that are on the list. I just started seeing a PT last week and I am hoping she can help with pain and get me back into somewhat of a normal life. I have read everything I can get my hands on for information so that I know what I am dealing with, but still hard to accept and understand. Day to day struggles can be hard. I was a very active woman, I work full time, with two "just" grown children and looking forward to some time with just my husband and myself. Love the outdoors, my rose collection and fishing. This has stopped me in my tracts and has been life changing. I am hoping that I can get my normal life back someday soon. I have not posted here before, but have read and been uplifted several times dealing with this. What a wonderful idea someone had staring this site! :)

[tigger_gal]

:welcome: :hi: Glad you found us.. you will find a wealth of info on this site and a load of support..
I was dx'ed with IC in 2001, with a cap of 350cc's under sedation :( I am not lucky enough to have a larger bladder..... I so wish... I too have painful periods.. before during and after.. alos hurt in between.... I hope you'll be a lucky one like other that the meds work for you...
Thanks for posting and introducing your self...
hugs
Brat

[ICNDonna]

Not everyone with IC has the classic pinpoint bleeding. And I know of several people with IC who have normal, or more than normal bladder capacity.

It does sound like your doctor is ordering what are usually effective treatments --- I hope you will feel better soon.

Sending warm healing thoughts,
Donna

[Sarojini]

It certainly sounds like your doctor is well-informed on IC. It's true that there's a subset of IC patients who do not show the classic signs of IC upon hydrodistention (pinpoint bleeding, Hunner's ulcers, etc). I know there are several members of these boards who are in the same boat you are --their bladders showed nothing unusual but yet they still have symptoms, and they respond to the meds for IC, so for all practical purposes they have IC.

Give your meds a chance to kick in -- sometimes it can take a while, and it can be a slow progression where you feel just a tiny bit better every now and then, so you barely notice the change until one day you say, "WOW, I feel great!"

I am sorry though that your doctor doesn't believe in pain therapy. If you find yourself in severe pain, it may be worth talking to either your family doctor (primary care doc) to see if he/she can help, or perhaps ask for a referral to a pain clinic, where they specialize in treating chronic pain.

Good luck to you :grouphug:

[work it]

Welcome, patience is the key word here since the medications do take awhile to work. I was diagnosed about 2 months ago and I can honestly say some days are worse then others but at least I am on medication now and on the right road to feel better.

[VRoberts]

Thanks for the warm welcome, and knowing I am not alone in this struggle! I learn something new everytime I visit this site. I am trying a lot of the flaring suggestions posted. Patience is the biggest problem I have right now, it's hard not being able to just fix it.

Lotsa Hugs!! :)

Vanessa

[Trishie]

Hi VRoberts
I don't know if I have IC yet or not. I have hydro/cysto tommorrow for a diagnosis. :yikes: This is my 2nd uro who my 1st uro as sent me to. The one that is doing the procedure is a IC spec. I had a cysto/hydro last Nov. and I didn't have any of the pinpoint bleeds or anything like that , but I have the urge/freg. and pressure when I have to go (but not pain) and I have to go RIGHT NOW! so the 1st uro said he thinks I have IC and didn't know what else to do so he referred me to the IC spec.

[Stella1609]

Welcome to the ICN :). I'm very recently diagnosed myself. My doc actually made the diagnosis based on my very classic IC symptoms (if it looks like a duck and quacks like a duck . . .) with no hydrodistension or potassium sensitivity test (although I did have a regular cystoscope and dilatation to rule out more serous illnesses). His premise was that since both tests can cause more pain and neither are 100% indicators for IC, why put me through it? I agreed :D. I also have a normal bladder capacity when under sedation; I think it's your waking capacity that really counts ;). Anyways, hang in there, and good luck finding some relif!

[bikingjudy]

I too was diagnosed with IC about 2 years ago. I haven't had the tests for the ulcers or the pinpoint bleeding, although when I have a particularly painful urination I've noted what appears to be blood.

I tried Elmiron for 6 months and then gave up. Possibly too soon? I found on the Internet the book "You don't have to live with cystitis" by Larrian Gillespie, M.D. Her list of foods to avoid encompass just about everything that tastes good or is healthy for the average person. She notes that stress is an aggravator, which I have noticed as well.

My biggest problem is at night. It seems like I have to get up every hour (and sometimes even more often than that) even though I only urinate a little. It must have something to do with that prone position. I'm feeling sleep deprived.

Is there another med besides Elmiron that everyone is taking that might let me sleep through the night (or at least for several hours without waking)?

Also, is there any connection between IC and the prescription Evista? It's the only prescription I take and I started it a year or so before I developed IC. Just thought it was worth throwing it out to see if any of you might think there's a connection. I do plan on discussing it with my physician but unfortunately we don't have an IC expert in Yuma, AZ. I am, however, fairly close to Scripps and Mayo Clinic.

So happy to find this IC site and welcome any helpful hints.

PS: Dr. Gillespie's book also goes into over the counter meds which might aggravate the IC.

JudyJ

PPS: Excuse me if you find this repeated, but I wasn't sure where my reply went.

[sst]

I read your story and like you I don't have all of the symptoms and I have a large bladder the Dr. says it is not normal. Maybe this explains why I don't have the frequent bathroom trips. :) Like you I have many questions. I plan to gain some control by making a list of questions and taking them to my Dr. as they say knowledge is power.
Hello! I was diagnosed in May 04 with IC. I too had unexplained urinary tract problems from the time I was 19. I believe the IC actually surfaced and stayed about a month after I turned 40. Since being "officially" diagnosed I am on medicines that alot of people seem to be taking which is atarax, elmiron, as needed bladder installations, and just this month elavil. I had the Hydro Distention done in Sep. However, I do not have a small bladder, I have right the opposite what the docors and the PT call a sloppy or floppy bladder. I have a bladder capacity of 1700cc. The doctor did not find the "classic signs" of IC. She told me even though the "classic signs' are not there, it does not mean I do not have IC. She said 20-30% of patients diagnosed do not have the pinpoint bleeding or the ulcers. Or she said she could be wrong in where I am in the progression, and actually in the starting stages. They have now added IBS and Plevic Floor Disfuction to the list though from other problems I am having. My question is is there anyone else out there they didn't find the taletale signs of IC like pinpoint bleeding etc, and they were told they still have IC? I do have the burning, urgency, frequency, and the low grade pain almost constantly now. Pain was the 7 days before my cycle in the beginning. Now is almost non-stop. I do have an outstanding doctor and she is very sympathetic, However she does not believe in narcotics for pain management which somedays I struggle with. I am on the IC diet, have found a few items I can't have that are on the list. I just started seeing a PT last week and I am hoping she can help with pain and get me back into somewhat of a normal life. I have read everything I can get my hands on for information so that I know what I am dealing with, but still hard to accept and understand. Day to day struggles can be hard. I was a very active woman, I work full time, with two "just" grown children and looking forward to some time with just my husband and myself. Love the outdoors, my rose collection and fishing. This has stopped me in my tracts and has been life changing. I am hoping that I can get my normal life back someday soon. I have not posted here before, but have read and been uplifted several times dealing with this. What a wonderful idea someone had staring this site! :)