Thread: joining the club.....
10-17-2005, 10:58 AM #1
- Join Date
- Oct 2005
joining the club.....
hi, all......after lurking here for a bit, i have decided to de-lurk and share my story. i was formally diagnosed with IC last wednesday, 10/12 after many, many years of symptoms. last september was the first time that IC was mentioned by my ob/gyn when i went in for yet ANOTHER "bladder infection." i had been on a motorcycle trip to canada (i know, i know) for a week of symptoms that i treated with OTC pyridium and CRANBERRY JUICE!!! by the time we got home, and HONESTLY, i do NOT know how i got home, i was in absolute bladder AGONY. i went in to the doc and was told that indeed i did NOT have an infection, but probably had IC. i was given Detrol LA and sent on my way. i was able to get enough relief to function and self medicated throughout the year when the symptoms became unmanageable. a couple of weeks ago, i had large amounts of blood in my urine and went back to see my doc. she said it was time for a urologist, and made the call to get me in right away. i was scheduled for an IVP and cysto with a KCl installation and started on elmiron. i had the IVP first, which was negative, then the cysto last wednesday. i reacted MAJORLY to the KCl, so got my answer to the question of what was wrong with me. when giving my history, i was honestly surprised at how long this has been going on. there are actually family stories that my parents shared with my kids about my dad having to follow me around when i was a little girl with a MOP! i had a standing prescription for many years for urispas. somehow, this just didn't get diagnosed, and i have developed quite a high tolerance for pain! anyway, as much as i hate to join this "club," it is so wonderful to know that i am NOT alone on this journey and that there are great people like you all out there to help me along the way.
10-17-2005, 05:07 PM #2
Welcome to the ICN Kawgirl! You are right, this is a great place where people can be here for you and you can know you are not alone. Having IC is hard. It's a huge adjustment. In the beginning I think I minimized my symptoms that it took a couple years to really know I had a real problem. I was lucky because the first urologist I went to was pretty sure I had IC. I found this place to be a safe haven and a huge support. It helped me get through the weeks of getting diagnosed and helped me make decisions about my care. The first uro I saw just wasn't right for me, so I ended up getting a second opinion - which luckily was the best thing for me. It made it so much easier to make that decision with the help of everyone here.
Thanks for sharing your story. I hope that you find relief from your symptoms soon. Thanks for taking your journey with us. We are here to help.
10-17-2005, 06:32 PM #3
10-18-2005, 05:29 AM #4
to the ICN!!
Have you checked out our Patient Handbook yet at http://www.ic-network.com/handbook ? It's full of lots of information about treatments and self-help strategies. It's very interesting reading and was a lifesaver when I was first diagnosed.
I'm glad you found us and feel free to post as often as you like****
*Diagnosed with severe IC in 2004
*Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
*Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
*Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).
**I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
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