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I have a diagnosis.... I have a diagnosis....

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Unread 01-13-2003, 08:46 PM
I have a diagnosis....

Hello Sisters

I've got a diagnosis...finally! Not sure I'm too excited about it, but it is what it is, and that's that.

Intersistial Cystitis...inflammation of the interior of the bladder wall.....very painful. My GYN suspected it too.

The uro doctor was really, really nice...very concerned, compassionate and looked me straight in the eye. I liked that. He spoke in laymans terms too.

We talked, he examined me and then did a cystoscope exam, cathed me and then started the fill...oh my THAT was so incredibly painful for me!! Seems a normal women's bladder will hold 500 cc's before she feels like she's got to go. I felt it with 1/4 Cup in there....I was able to very painfully tolerate (barely) 400 cc's...he took a look in there and saw many ulcers, no tumors though, no cancer. The lower back pain has nothing to do with the bladder...a different issue. I see the GYN again on the 28th of January so we'll talk about that then...since the MRI came back negative it makes a stronger case for returning endo or adhesions...of which my body makes alot of. I found this out during a shoulder surgery I had in Dec. 00.

When I left his office I was in so much pain I really didn't think I'd make it for the rest of the day at work...but, I went back to the office, had a light lunch and took 2 Tylenol. Somehow I made it.

He prescribed a med called Elmiron, gave me a handout of foods to avoid..(quite a list too)...made an appt for 3 months and told me if I have no improvement in 1 month then to call and he will do a proceedure where he does exactly what he did today only with me out cold. There is no way I could have tolerated 1 more drop in there today...NO WAY!! Plus he told me I have a small bladder to begin with....Great. The proceedure he did today is both diagnostic and therapeutic.

I'm feeling very sore tonight and decided to skip Yoga class...doc did tell me I'd be sore today and tomorrow and will burn with urination....and I do. I really don't want to drink anything at all to avoid urination, but no choice, I've got to.

This is a chronic condition....no known cause, acute episodes will occur trigger by certain foods (high acidic types) and stress. Since I've been suffering for 2 months now, I doubt it's my breast issue....I'm a type B so I do internalize all my stress. I really don't feel much stress, except after thinking about it, I realized my Dh has been under treatment for Hep C for the past year (he's done now) and that has been extremely stressful for me. Alot more of the load was on me and he was so sick that I really was his nurse for the entire year and took care of everything....who knows if it had anything to do with it....but it could have.

Doc said the med will take a month or more to really kick in...thats the bad part....darn.

IC is where the interior of the bladder becomes inflammed and when urine starts to fill the bladder it irritates the ulcers and/or tumors which then cause the bladder to spasm and the urge incontinence kicks in....all makes perfect sense to me now.

I'm relieved (no pun intended) to have a diagnoses...however, this is a chronic condition and there is no cure. I will have to adapt my lifestyle to deal with it and that's what I intend to do...

For now my dear sisters, I'm going to bed. I'm very tired and hear my heating pad calling my name...

"Lori, Lori....I'm all warmed up for you!!!"

Take Care, Love you all....



Now, I just need to get through the biopsy on Thursday...please keep me in your prayers....I'm pretty freaked out about that whole thing to be honest with you. Type B or not.
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Unread 01-13-2003, 09:11 PM
I have a diagnosis....

Lori, sending lots of s your way!

Emily s
Unread 01-13-2003, 09:24 PM
I have a diagnosis....

(((Lori))) I'm glad you have a diagnosis now... sorry it's such an uncomfortable one though! Plenty of gentle s for you tonight.

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Unread 01-13-2003, 11:08 PM
I have a diagnosis....

Lori....my fellow IC sister..... I thought about you all day today. I feel like we are going through this together....we are! I know exactly how you are feeling. I am in so much pain since the procedure. I almost went back to the nurse to ask her if it was normal to be in that much pain. I too had to go to work afterwards and it was tough. Luckily I don't have to work tomorrow so I can rest.

I hope the medication helps you and you find relief soon...I know too well how very painful this is!

Take care and keep me posted on how everything goes
Unread 01-14-2003, 06:21 AM
I have a diagnosis....

I'm glad you at least have a diagnosis. I had the cysto done a few months ago and it did make me very uncomfortable for a few days. My doc didn't warn me about that, as yours did I think you have a keeper there!

You will continue to be in my ers sweetie. Good luck on Thursday!
Unread 01-14-2003, 10:07 AM
I have a diagnosis....

Hi Lori!
Wow! I read your post, then pasdechat's....and I'm sending your way because I know this has to be hard for both of you!! I was curious to see what your diagnosis was, since our symptoms are so similar. I sure hope the meds start to help you after they kick in! My uro appointment is this Thurs. After reading your posts I'm glad it's scheduled AFTER the internist/gastr doc...sounds like it might be a bit uncomfortable afterwards, eh?? I am saying ers for you that you feel better very soon.
Unread 01-15-2003, 04:41 PM
I have a diagnosis....

(((Lori)))) I'm glad you finally have a diagnosis. So sorry it's such a painful one, though However, knowing what is causing all this pain means that you now have a course of treatment.

Sending gentle s your way.

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