Need Help

[Joanne169]

I have been recently diagnosed with IC. I had exploratory surgery then a hysterectomy not long after. One urologist did a cystoscopy on me, than left me out to dry, he did diagnose me with IC. He gave me no medication and said that I could return to work in a day. Thank goodness for my gynecologist who stuck by me and told me I wasn't ready to go back to work. I can't sit for long periods of time or even walking. The only thing that helps is lying down or sitting on my recliner. I then went for a second opinion which he decided to give me elmiron through a catheter. I had six treatments but I still have pain and pressure. I was on short-term disability and now I am trying to go on long-term. The urologist I have now thinks I am looking for pain medication and trying to get out of work. The company I worked for 13 years after my family medical leave was up terminated me. Long-term disability needs the doctor to say I am disabled. I have an appointment next week, but not sure how to handle this with my doctor. It is very frustrating when people think you are faking or just crazy. Please help!!!

[ICNDonna]

There are many treatment options for IC (see the Patient Handbook at http://www.ic-network.com/handbook ). If your current physician is not able to work with you to help you feel better, it may be time for a change.

I also suggest you try the IC diet, which is also in the Handbook. Some find that single step is enough to keep their IC under control.

Sending welcoming hugs and healing thoughts,
Donna

[Sarojini]

:welcome:

Donna said everything I was going to say. There are many other docs out there who are compassionate about IC; they may be hard to find at first, but my suggestion is to call various urologists from your insurance handbook's list of covered providers. When you call, ask if the urologist treats IC and ask for a small summary of his preferred techniques if possible. Also note if the office staff you talk to seems polite, nice, and compassionate... that is very important and can be an indicator of how the practice is run in general.

[stacey79]

:welcome: I'm sorry you're having such bad experiences to start with. YOu've gotten some wonderful advice from the other ladies. Find a doctor that will work with you.

You might also note that farther down on these message boards is a board dealing specifically with social security/disability issues that might help with any questions you have in regards to that.

Hang in there! And welcome to these boards. You'll find a loving, supportive community of ICers who are great reminders taht we aren't alone.

[traceann]

Hey there and welcome to the boards! I am with the others, there are many treatment options, and because one doesn't work - don't stop trying. It can sometimes take a bit of trial and error before finding what works for you. When I was first diagnosed, I was terrified, I had no idea how on earth I was supposed to work feeling this way - I was single, with bills and a mortgage and no health insurance, it was unimaginable. But, with the right med combo and the diet, it never became an issue for me. I was able to get things under control, so it doesn't control me. ;) That was one fear that never materialized -- thank goodness. But in the beginning, I never in a million years thought it possible. It just goes to show, don't give up on anything, don't discount anything until someone gives you the opportunity to try other avenues of treatments! :) And like Stacey said, there is the board that deal just with the disability issues, that can be super helpful!!

I guess my point is what the other ladies said - there are doctors out there, don't give up. For me, my treating physician is my Gyno. My med combo was Ditropan, oral Elmiron and Vistaril (hydroxyzine). Now I am just on the Vistaril.

Once again, welcome to the gang and keep looking for a doc that can and will help you!

HUGS!
:)

[JACKIE GOFORTH]

I Went For My Second Appenion And Csytosopy W/ Hydrodistension Yesterday . I Was First Told I Had Ic Feb., 2006. After A Year Of Peeing Razor Blades. This New Urlg Says I Don't Have Ic, But Low On Estrogen, That Causes A Buld Of Some Kind In My Bladder . He Really Don't Know Too Much About It . I Have A Post Op Appointment With Him On Monday The 3rd, Don't Know Where That Puts Me.
Has Anyone Heard Of That?
It's Funny One Say I Have Ic And The Second One Says No, I'm Really Confused At This Point , But Still In Alot Of Pain.
Any Info Would Be Greatly Appreciated.
Jackie

[Joanne169]

I just want to thank everyone that reply to me. This is all new to me and I am still trying to find my way around here. Once again thank you so much for your reply's.

[VickiB]

Hi Joanne, Glad to have you join us! Many of us have had your experience of the doctor who seems to think us either crazy or 'drug seekers'. It's an awful feeling to be in pain with no end in sight! I want you to know that most of us do get better, but it can take time and a bit of doctor shopping.

Ditto what the others said on finding a doctor who is knowlegeable on IC, -or at least willing to learn! There are many treatment options out there, and just sending you home with nothing is inexcuseable!

I have to add another plug for the IC diet. That was the one best thing I did to relieve the pain I'd been in, and still do today to keep my symptoms at bay.

Hang in there!

Vicki

P.S. Jackie, I'm sorry you're going through this confusion! Not being a doctor, I have no idea if low estrogen can be a cause of peeing razor blades. Has your first Uro been treating you in any way for your symptoms? The fact that you say the second really doesn't know much about it, makes me wary. I hate to say this, but I guess I'd be looking for a third doctor who is knowledgeable in treating IC.

Hugs to you!