newbie.... [Archive] - ICN Support Forum - Interstitial Cystitis, Overactive Bladder, Pelvic Floor Dysfunction

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bwaymyway

11-24-2008, 08:36 AM

Hey!
I have posted on the boards a few times before my diagnosis. I had my cysto/hydro on October 22 and was diagnosed with a mild case of IC after 5 months of being treated over and over for non-exsistent UTIs!
I'm 20 (turning 21 next week!), and a music major in Myrtle Beach. I have a wonderful boyfriend here who has seen me through this from the beginning and is super understanding of what I'm going through. The rest of my family is in Columbia- about 3 hours away, which is also where my doctorides are. They are all super supportive as well- my mom bought herself a copy of The IC Survival Guide and has starting keeping up on research.
I am currently on Elmiron, 3 times a day (such a pain!!), Vesicare at night for urgency, Utira-C as needed for pain, & Fluoxetine (Prozac), for the emotional problems I suffered during this whole ordeal, with the advantage of also being one of the antidepressants that are pro-bladder!
I am just starting to take the IC diet seriously & will be posting plenty of questions in the Diet Boards! Being from the south, I live off of chocolate & sweet tea, so it's tough. I'm also a vegetarian & I'm having issues getting my protien after cutting out soy products.
Some days I am very positive about it, but some days I'm really down- all of you know the feeling, I'm sure. It's tough for a healthy 20 year old with no prior health problems to hear that she has a disease that will be with her for the rest of her life!!
Anyways, I look forward to talking to you guys more- and would love to hear how you guys cope with this!
Thanks!!

icgennifer

11-24-2008, 09:08 AM

Hi there,

I too was recently diagnosed with a mild case of IC.. although I feel like my pain tells me it's not mild ;) My boyfriend too has been wonderful throught this whole process of diagnosis and treatment. Just like you, I try to think positive, but lately I've been frustrated and sad. I just started the IC diet.. have you noticed any change since you've been using your medication?

I tried Elmiron but got severe headaches.

I just started bladder instillations and just started taking bladder Q. I take Toradol sometimes for pain.. but it's only a short term pain reliever.

Feel free to ask me anything you'd like.. I was diagnosed on 11-6.

Take care,
Genn

JerseyJodi1

11-24-2008, 01:47 PM

mlzippy7

11-24-2008, 03:17 PM

:welcome: to all of you guys!
Glad you found us and I am sure you will find a ton of information here to help you!

icgennifer

11-25-2008, 02:23 AM

Hey there.

I was just diagnosed on 11/11 with a mild form of IC but have not started treatment yet. My doc wanted to wait four weeks so that the areas she biopsied can heal. I just finished my pyridium and just have Urelle left to take b4 seeing her on 12/12. I tell you it's like torture cause I just want something. I just have mild urethral symptoms really just an annoyance.

How are the pills working for the both of you so far? And how are those bladder instills? What exactly are they putting in? I am trying to figure out what treatment I want....

Hi Jodi,

Do you live in NJ? If you do, I live in NJ too! The Elmiron gave me severe headaches and I didn't see much improvement using lyrica (my doctor put me on a very mild dose.. so maybe it wasn't strong enough?). Pyridium and prosed D didn't help either. My pain is in my bladder though, I don't have urethral symptoms.. right now I am taking a dietary supplement called Bladder Q and I take Toradol for pain as needed. I'm going for my 2nd bladder instillation today.. it's a mixture of Marcaine, Lidocaine, Gentamycin, Kenalog and Heparin. The urologist Im currently seeing doesn't seem to know much about treatment options so I'm going to a urogyecologist on 12/4. I'm hoping he'll have more options for me. Also, I've been trying to follow the IC diet and it seems to have calmed my bladder down a bit.

Take care,
Genn