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View Full Version : Am I on the right track??


Darcyj
11-30-2008, 01:42 PM
:help:
I'll try to keep this simple. I've been having problems for years now and don't want to waste any more time if I'm not on the right track.
Have had symptoms of frequency/urgency/bladder pain for years--at least back to 2002.
Family docs have Rx'd antibiotics and OAB meds with no relief. Sometimes urinalyses were pos and sometimes inconclusive.
Finally got uro referral approx Fall 2005. He did urinalyses: all inconclusive. Uro still thought I was getting infections and gave standing script for abx and also different OAB med he thought would work better. Also, told me to avoid common foods that can irritate bladder (with no mention of IC). Also, ordered ultrasound of kidneys as I suffer(ed) from lower back pain when my bladder flairs. Results all normal.
I decided I was just doomed to have a "sensitive" bladder and a "small" bladder.
We decided to start a family and got pregnant August 2006. As soon as my uterus started to press on my bladder I was miserable!! I never went shopping or anywhere because I always had the sensation I had to pee and could tolerate standing for very long.
After I gave birth, I could not believe how long I could go without having to run to the bathroom. I could go 4 or 5 ours without even thinking about it and no bladder pain. I had no menstrual cycles until about 14 mos postpartum since I was breastfeeding. I didn't have a flair until about one month before my cycles returned. I was also on a very strict elimination diet due to my dd's food allergies. I was also worried how the caffeine would effect her and had no caffeinated beverages either. The first flair at 13 mos postpartum was back pain that lasted a few hours, along with intense bladder pain and heaviness that lasted a few days.
So, at this point I'm thinking that it is hormonally related. However, I did notice I could not eat a few things without getting frequency and some mild to moderate pain.
I was able to get a urogyn referral and she had be do a voiding diary and a questionaire and has decided it is not IC due to the fact that I only had to go once over night. ?? I brought up endometriosis since my sister has it and she of course wasn't real big on it since I had gotten pregnant so easily. My sis got pregnant 4 times unplanned and still has endo. However, she said lets do a cysto while you're on your period and we'll see if there is any endo on your bladder. My period was late and had the cysto a few days before as a result. She said my urethra and bladder lining looked great. However, I do not believe she did hydro. I was awake and not sedated. She did see several compression masses that she Rx'd an MRI to help diagnose their location. She also ordered a 24-hour urine collection which I am to turn in tomorrow to screen for an endocrine tumor.
This is where I am now. Should I insist on further testing for IC like a hydro? It looks like I might have to end up having a lap for whatever is pressing on my bladder once it's full. It could be tumors on the outside of my bladder. I'm not getting too worried right now because doctors have scared me into thinking I could have something serious so many times and found NOTHING. It could be fibroids and she said she would just leave them there if it is. Well, duh, doesn't she think I might get some relief if they were removed? Does anyone have any suggestions after reading this long novel? BTW, thanks for reading.

leelee88
11-30-2008, 02:11 PM
First of all a Office Cysto does not always show IC..More often it does not than it does.. Second of all before I was diagnosed I only got up once a night to pee and sometimes could sleep all night.. I was Diagnosed with IC in 2006 with a Cysto/Hydro..Your symptoms do sound like IC..AND Hormones CAN flare IC..
So IF it was me and I was having your symptoms I would want more answers. You could ask for a PST test.. That is a Potassium Sensitive Test, this is where they instill a solution into your bladder and see how you react to it.. If you show a reaction then it is likely you do have IC.. But again this test is not as accurate as the Cysto/hydro..

So I do think a second opinion would not hurt. And for now I would stick with the diet. But I would get more testing because IF you have IC you really need to get on the diet and start some sort of treatments to help you control it. Best of luck!

Darcyj
11-30-2008, 02:22 PM
Thank you, Ronda.

dyno
11-30-2008, 02:28 PM
I agree with Ronda on this a second opinion wouldn't hurt. My IC is definately affected by hormones and diet.