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View Full Version : Newly diagnosd - HI!


Mecrodynes
05-20-2005, 09:33 AM
I had my cystoscopy last week and I went today for my post-op and he told me that's what I had. I suspected I had that for awhile now, but it was actually confirmed.

My name's Danielle, I'm 18 and from Florida, currently living in Missouri. I'm engaged and will be getting married this summer and moving back to Florida afterwards :)

My symptoms have been going on for maybe four years now. I had an iron bladder when I younger, but that all changed at around 14. I started getting constant UTI's and went from having to urinate a couple of times a day to dozens of times. It's just gotten worse over the years. Sex is always excruciating, urinating is always painful, and now I have to go about 40-50 times a day. I finally went to see a urologist about six months ago, and he prescribed me Detrol LA. He told me that if that didn't help that he had his suspicions it was something called interstitial cystitis.

Of course, Detrol LA didn't do anything, and I agreed to have a cystoscopy done. So that's that, and now I'm taking Elmiron.

Others things....

I have been clinically depressed for about five years. Nothing has ever worked for me, but now that I know a lot of it may be caused by IC, it gives me some hope that maybe things will get better once I get treatment. Not cured, but improved :)

I am scared to death to get a job again. I worked in a restaurant for about a year but quit a few months ago. It was really difficult, because I would HAVE to go to the bathroom every fifteen minutes or so, even on Friday nights when we were incredibly busy. Customers and employees would always kind of look at me funny, sometimes even ask me about it. It was pretty humiliating. At the time some family members were convincing me that it was all psychological and "in my head," and that I had to control myself. Do any of you explain to your employers about your condition? Because it's a really worry to me.

tigger_gal
05-20-2005, 09:36 AM
Hi Welcome to the boards.. you willl find a wealth of info with in these pages... I am sorry you have IC
Brat

poetgirl
05-20-2005, 09:56 AM
Hi Danielle,

Welcome to the boards. I'm sorry to hear you have IC too, but you've come to right places for information and support. How long have you been taking Elmiron? That has been helpful for many of us, although it can take a while for it to finally start working.

I work in a large corporate environment, but my work arrangements are very flexible, so that I can telecommute when I'm not feeling well. I have told direct supervisors or managers about my health conditions and they are usually pretty understanding and supportive. I would imagine a restaurant job would be difficult to do if you're in pain and constantly needing to use the restroom.

Good luck with your treatment and let us know how you are doing!

Sarojini
05-20-2005, 10:47 AM
:welcome: to the boards :)

If you haven't checked out our Patient Handbook yet, I encourage you to do so. It's at http://www.ic-network.com/handbook . It is full of info on different treatments and self-help strategies.

You may want to discuss your treatment with your doctor at this point -- Elmiron can take 3-12 months to really start to work, and there may be things he can prescribe for you that will help while the Elmiron is "kicking in."

Good luck and we're glad to have you :) And congrats on your upcoming wedding :) :)

K9wife
05-20-2005, 10:53 AM
Your story sounds very much like mine...I, too, was diagnosed at age 19 ,but now am almost positive I probably had IC many years before. That was MANY years ago (LOL!) during an era when Drs thought it was only a disease of middle-aged women, and I was even more of a freak than I thought of myself! (I am 46 now, married, 2 children and 1 3/4 grandchildren) I wish so many times that I had been able to have a site like this one to turn to for answers and support over the years when times were tough. As you read these posts, you will see that some days are absolute monsters, but some days can actually be pretty darn good! Don't let IC beat you....we need to get out the word to everyone we can that this disease is REAL,, it is NOT in our heads, and we deserve to be pain-free and cured as much as any cancer patient. The support of your loved ones, and their understanding of how IC presents itself from time-to-time is VERY important...have them come here and read some of the posts to help them better understand. I promise you, if we all hang in here together, it just seems SO much easier! You're right about emplyers not understanding....I work for Doctors and THEY don't even get it, so how could you expect a restaurant owner to?!?
I will be watching to see how things progress for you, but again- you CAN get thru the tough days....we all do, and it's easier with an undertstanding friend to chat with. We all really DO understand!

Mecrodynes
05-20-2005, 11:25 AM
Thanks for such a warm welcome! :) I actually haven't started Elmiron yet, I'm waiting to hear back from my oral surgeon. I'm getting my wisdom teeth removed on June 4th, and since Elmiron's a weak blood-thinner, I don't know if I should just wait or not. Guess I'll find out! As far as other ways to relieve pain, my urologist prescribed me more of URelief and DetrolLA. DetrolLA didn't seem to work before, but I might give it another try.

emilyrose197377
05-24-2005, 04:26 AM
welcome to the board The ladies are right you will find a lot of useful info and help on these boards. I am sorry you have Ic.

traceann
05-24-2005, 05:32 AM
Hi Danielle! Glad you found the site, there is soooo much info here and support, it's just amazing. I have no idea how I would have ever managed without it, especially in the beginning, no one in my area seems to know anything about IC!

Hugs,
Tracey :)