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amanda.d
03-31-2010, 02:56 AM
Hi (sorry this is so long)
I am 30 years old, but have had a history of u.t.i's since I was about 4 years old. I had not had one in over 4 years and suddenly on Feb. 16th I woke up with that "twinge". I immediatley went to the dr. who put me on antibiotics, pyridium. Almost a week later I was still hurting/bothered. Went back. They told me my culture had NO growths. So I went to my gyno....all good there. Made an apt with Urologist. He gave me cystex which helped alot and said my uretha was small so he stretched it and said he was treating me for uretheral syndrome/ possible i.c.. (Talk about peeing razors for a few days after the stretching). Started feeling better and almost my old self a few days later. (Besides the 15 trips to the bathroom per day). Had pizza and sex Friday night and Sat. I woke up and felt the twinge feeling. (The uncomfortableness I feel with u.t.i. symptoms.) Gradually went down hill from there. Felt like my bladder was on fire on and off. I went cold turkey on food and was eating nothing but grilled cheese, milk and a few other things. LOst 10 lbs in about 2 weeks :(.
Finally that Tuesday doc called me in proced (stuff that turns pee blue). WOW it really helped. But still feeling something just isn't right.
Need to add here that I had gastric bypass in july 2008, have had No complications from it. I recenlty stopped my vitamins too.
Next appt. Doc put me on oxybutnin for bathroom trips. Has helped alot. I went from 15 trips to 6ish.
He also explained he wanted to do the hydro thing to rule out i.c. and possibly give me more room in the bladder. He seems to be a good dr. but not up to par on i.c. I mentioned things I ate and he's like, "is that on the i.c. list?" Kinda threw me there, but ok. So we scheduled the hydro thing.
Had it done on Wed. (23rd). Went well. Hurt the first day and back to the same feeling I felt prior to the hydro. My bladder bled.
From what I got out of my check up on the 24th is that he couldn't say I had i.c. or not. If i have i.c. it's a very mild case. I guess it's normal for some normal bladder's to bleed during the hydro... Mine looked like it had scratches all down it (in the same direction.) He said it also depended on my reaction to the hydro....which so far I feel no improvement or worsening.
I am scheduled today to go over my biopsy at 1:45.
I just dont know.... could this be something else? could i be having a "woman" problem that is effecting my bladder? He said no that it would have shown up on the cat scan, and my gyno would have suspected something.
The only thing cat scan found was a small kidney stone.
Everything seems to be under control but the twinge i feel almost constantly. It's like a nerve or something is out of control or a pinch in there. It's worse sometimes than others. If I take 1/2 of a lortab it helps knock that edge off and I almost feel normal.
The dr. wants to put me on the antidepressant Evaril (sp). Which I assume he will remention today.
At this point I am just unsure. If the dr. can't say it's i.c. or not it's just confusing. Should I get a second opinion? Does this sound like something else going on?
I am so afraid to have sex with my husband, or even try a food not on the i.c. diet. Just to see if it flares me....but am i still flaring? is that the feeling I feel?
I am a stay at home mom of a 2 and 4 year old, and attending school to get into Nursing. I am scared I am going to have to stay home be unable to work, but what scares me the most is not being able to be the mom I want to be to my boys.
Any advice etc is greatly appreciated...
thanks.... glad I found this group :)

so far here's what's been done:
cat scan/blood work
cystoscope-looked good but didn't hold but 200cc and was in horrible pain with the fluid being put in!
meds: cystex and proced more pyridium(not using any at the moment)
oxybutnin 1 or 2 per day
hydro thingy- biopsy said my bladder held 800cc's then 900
been suffering for 43 days now.....

ICNDonna
03-31-2010, 03:08 AM
It's only been a week since your procedure; I hope you feel better quickly. Be sure to let us know what the biopsies show.

It's good that you're following an IC diet.

:welcome:
Donna

amanda.d
04-01-2010, 02:09 AM
Well my biopsy had no tumors or cancer...just inflamation. My dr. feels I have a mild case of i.c.... if this is what mild feels like I can not imagine severe....the pain and burning was awlful. I have been sticking to the i.c. diet for about 3 weeks now and still having discomfort-just enough to make me feel like poop some days. The dr. wants me to start the Elavil (sp) this week, and in about a month possibly Elmiron....
just confusing when he tells me to take advil, and so many of you can't take it. Scary trying to finding the triggers.

VickiB
04-01-2010, 06:54 AM
Hi amanda.d and welcome to the ICN! -So sorry you've had the need to join us though!

Well, the no cancer / tumors from your biopsy is good news!

Confusion seems to go hand in hand with a diagnosis of IC, at least at first. When I was diagnosed my Uro, just out of med school, told me they really don't know all that much about IC. I was given prescriptions (Elmiron, amitriptyline (generic Elavil), hydroxyzine), and a diet list. I was also given websites to visit, the ICN here was one of them, and he told me the next time we met he expected I would know more about dealing with IC than he did.

I appreciated his 'matter of fact' ness. I suppose taking Advil instead of Tylenol might have been one of those things he may have missed too. There is just so very much a urolgist needs to know, and they can't possibly know it all. So I think it's very important that we educate ourselves, and learn what we can do to help ourselves. Obviously you lean towards that kind of thinking, too, because you're here! This is a great place to pick up necessary info on living with IC.

Hang in there. Things will get better!

Vicki

c2miracle
04-01-2010, 07:10 AM
Hello and welcome! it is still "trial & error" for me when it comes to the foods and drink, and I was diagnosed almost two years ago. There are alot of us who don't feel like there a "good mom" when this effects us so much. There is a book in the IC Shop that is just for kids, "My Mom Has Interstitial Cystitis - A Painful Bladder Story by Jill Osborne, MA.
I am happy you have found this support group and hang in there! Think Positive!:smile tee

wildgirl1979
04-01-2010, 10:37 AM
HANG IN THERE!!! I can 100% relate to you, I havent had the bladder test done yet with CC's, but I have the auto-immune side of it, and I have to be careful with anything evasive, as it usually throws my body into a spin. I just wrote my doctor a pleading and begging note to find something that works.. and pain management. Living in a world of Autoimmune problems, doctors can never tell you 100% if you have something or not and its soooooooooooooooooooooooo frustrating... Sometimes you just want an answer, not matter what the answer is...

I am in the same boat as you. Started as a UTI, which I have gotten since I can remember, than is spiraled into this awful inflammation and days/weeks of meds and waiting.... *hugs* from a distance. I totally feel your pain. Literially.