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View Full Version : Praying I don't have IC - have cystoscope on Friday


shelwriter
11-11-2009, 04:23 PM
Hi All -

I've been reading this board off and on for the past 1 1/2 months and you all have been in my prayers.

My story is convoluted - I'm sorry that I ramble here....

2007 or 2008 - discovered microscopic blood in urine during routine women's exam. Several tests done. Sent to urologist.

Had several tests done over the last 2 years:

CT (found cyst on liver - told it was nothing to worry about)
in-office hydrothingy - dr. said he didn't see anything
FISH test - for cancer, nothing
Pee test - then bladder sono - found I was retaining urine, dr. said I'd probably have to have a sling when I got older


Have seen urologist every 6 months and still no cause for microscopic blood found. I don't worry about, but he still insists on appts. every 6 months.

Started noticing pain during intercourse over the last year.

August 2009 - regular PAP - found cysts on cervix, test came back as inflammed.
Went back for a "wet prep" discovered yeast infection (didn't know I had one, no symptoms) and a bacterial vaginal infection. Given fluconazole and antibiotic.

A few weeks or days later, I have a huge pain in my abdomen, double over and it's gone. Later that night I'm up at least 5 times to pee. Never done that in my life. It continued on.

Back at the dr - they said I have a UTI. I've never had a UTI in my life. No pain with peeing, no burning, no itching, just like with the yeast, no symptoms. They put me on Cipro for 10 days. After 7 days I call the dr. again telling them that my side hurts (right) really badly, they schedule a uterine and ovary sono. Discover a cyst on my right ovary, but say it's "simple" and nothing to worry about.

I still hurt - regular doctor suggests I go to the ER.

I suck it up and keep going on with life. The frequent peeing stops and I think I'm ok - if only the pain would stop...

A few days later, the right side hurts to breathe, move, laugh, cough - go to the ER. They said I had a UTI and put me on Bactrim for 10 days and Darvocet. I take the Bactrim.

Call the urologist, go in to pee in a cup and they call and tell me I have no blood in my urine this time, but they found protein in my blood. I thought protein was a good thing. Found out it's not.

Back to regular doctor - they send me to Gyno. Gyno thinks it's Uro.

Went in to see urologist - peed in cup, he did exam. Found no protein this time, but the blood is back and my WBC is slightly elevated. Wants to do csyto=thingy that you guys talk about. I agree. He says could be IC/PBS with pelvic floor dysfunction. He puts me on 3-weeks worth of Sanctura (OBA meds) and gives me darvocet and prescribes vaginal vallium suppositories because I can't have sex with my husband without it hurting.

I've tried all the pain meds and vallium and refuse to take any more. I have 3 kids, a high pressure job that I love, a household to run and I can't function on these meds.

Now I take Naproxen Sodium 3x a day - sometimes. Sometimes I get mad and stop taking them. . . and then I regret it. *sigh*

The awful pain in my right side is gone now. But now I hurt all the time, in the pelvic region. My entire abdomen hurts sometimes. Sometimes it's one place - but it moves. Sometimes my left side, or my right, or the middle, or high, or low. My back aches constantly. My legs, thighs and hips ache. I've had muscle cramps in my legs and right now my right leg feels like it ran a marathon without me, the muscle is cramped up perpetually.

And the bloating - - - - I look like I'm 6 months pregnant - always. It hasn't gone away. And it's driving me mad. I finally gave in and tried on a pair of pants one size bigger than normal, but they didn't fit, because I'm not proportionally that size. I'd have to go get maternity wear!!

I am scheduled for a cysto-thingy on Friday and now I'm nervous. I'm determined that it's something stupid going on with me and they'll give me a pill and tell me I was crazy these last few months and go home.

I don't have the frequency problems. I go maybe 3 - 8 times a day. I do have some urgency issues lately, when I do have to pee - I've gotta pee. :) But that only happens a few times a day. It's not all the time.

I don't have any burning. My abdomen just feels "odd" when I pee, kind of like it releases or something.

The pain is weird, too. Sometimes it feels like hot knives are poking me, or like a stitch in my side, or a cramp or a heaviness or an ache. It varies sometimes minute to minute. I'm always in some kind of pain or major discomfort though.

My coochie aches, too. Sorry if that's too much info. . .

I'm very frustrated and don't understand what's going on. From everything I've read on the boards, some of my symptoms sound like IC/PBS - but I don't have all of them.

Sorry I've rambled on... I'm just tired and scared. Thanks for letting my share my story. I would appreciate any insight any of you experienced IC'ers have about what's going on with me.

Blessings to you all who are going through this. Much love hugs and prayers!

dyno
11-12-2009, 03:40 PM
I am sending you hugs and hoping you find more concrete answers after your cysto tomorrow. You are doing the right thing by continueing to get the testing done.

The Cysto will help the Dr. sort through the urologic aspects of your symptoms and see if that is the source of your pain. Hang in there!

SharonA
11-12-2009, 04:10 PM
Just want to send my best wishes for the procedure tomorrow. I hope you will get some answers to some very agonizing questions.

:):):)

shelwriter
11-13-2009, 12:56 AM
Thank you for the thoughts and prayers. I'm getting ready to go now and I'm a little nervous.

Found out yesterday when the pre-admit nurse called, that I'm getting a DMSO instillation, too. Now I'm even more nervous.

My heart aches for all of you going through this.

I'll keep you posted on what the dr. finds. Blessings and peace.
-Shel

vm
11-13-2009, 02:55 AM
Good luck today. I do hope you find some answers for what is causing all these symptoms. :kissing:

Diamic65
11-13-2009, 07:10 AM
Let us know how your app. went.

DIAMIC65

shelwriter
11-14-2009, 02:48 AM
Thank you all for your thoughts and prayers. I had the procedure yesterday and I think it went well. I'm not hurting too badly today. It feels mostly like pressure with a few twinges of cramps here and there.

The urologist called my husband after the surgery and my husband wasn't sure what he said. The urologist said he'd come see both of us in a little while after I woke up, but he never came. I'm sure he was busy, but I'm a little frustrated that my husband didn't get all the information on the phone. *sigh*

My husband said all that he could understand that the urologist told him was that he saw a small bleed in my bladder so he was uncertain about this being IC. Apparently, they also checked out my kidneys and they looked fine, too.

Scott (my husband) said that the urologist said some other things but he didn't understand them. I called the urologists office yesterday afternoon and left a message, but he never called back. Hopefully he'll call on Monday and I'll get a clearer picture of what's going on.

In the meantime, I was discharged with some meds:

Detrol LA
Cipro
UTA
Imipramine HCL

with a follow-up appt. with the urologist in 2 weeks. They also told me to continue with my tramadol, vallium and darvocet as needed.

So, I'm not sure what's going on. I hope the urologist knows more and hopefully I'll find out by Monday.

Thank you all for your prayers and support. I'm frustrated still, but not hurting as badly today, so that's a good thing. :) Oh, and the bloating has gone down considerably!! :) Still bloated, but not nearly as bad. I almost feel normal in that regard. That makes me happy!

shelwriter
11-16-2009, 01:21 PM
My doctor called me this morning, but I missed his call!! Argh!! *sigh*

Still don't have a clear picture about what's going on.

I'm noticing that the Detrol LA seems to take a lot of pain away at first. I take it in the morning. By by mid-afternoon, I'm hurting again. I'm also taking UTA which seems to just turn my urine blue. Looks like I've been eating Smurfs. :toilet: :) I'm allowed to have up to 4 UTAs a day and once the pain returns in the mid-afternoon, I'm not noticing any help with it.

The Imipramine just knocks me out. I am sleeping better with this, and even woke up this morning on my stomach! I haven't slept on my side or my stomach in 3 months!!

Hopefully I'll catch my doctor's call tomorrow and find out what exactly is going on.

Does anyone here take Detrol LA?? Does it make your mouth dry? I'm noticing that things aren't tasting the same and my appetite seems to have decreased considerably. Could that be because of the meds??

shelwriter
11-17-2009, 07:34 AM
Well - it's official. I have IC. Doctor called me this morning.

I have a follow-up appointment on December 1 to discuss taking Elmiron, changing my diet, etc.

He's also sending me to a GI doctor because he says the bloating I have isn't urinary related.

I'm gonna start really reading these threads now. Looks like I've got a lot to learn.

Many blessings and peace to you all.

Diamic65
11-17-2009, 07:39 AM
Oh I'm sorry you had join the IC club:smile tee I hope you start feeling better soon. We're all here for each other. Keep in mind that stress can cause an IC FLARE.


DIAMIC65

shelwriter
11-17-2009, 07:59 AM
Thank you, Diamic65.

Can't avoid the stress right now - it's been a bad couple of months.


Hubby went to Iraq
his dad's health started failing
had to bring hubby home on emergency leave
took over FIL's medical and financial affairs
brought him to live with us
he passed away
found out step-FIL had multiple myeloma
MIL flew to Walter Reed to be with him
we're taking over their financial affairs
hubby is about to fly back to Iraq
had surgery last Friday and
got laid off of my job last Thursday so now we've lost half our income.

Been a little stressful lately. LOL :) But hey, God's in control, I'm just along for the ride. :pray:

Diamic65
11-17-2009, 08:15 AM
I'm so sorry to hear that your going through so much. Hang in there.:pray:

DIAMIC65

Julie B
11-17-2009, 08:34 AM
Oh Shelwriter........I am so sorry to hear everything you are going through.

I do have one thing to say about your IC diagnosis though........

At least you know what is wrong........

Now that you have a name, you can start working on feeling better. When I was diagnosed with IC 11 years ago I was basically told that I would never feel better. Well, guess what? We have so many treatments now for people that you CAN get better!

Glad you found us.............