View Full Version : Hi everyone, I am a newbie
08-11-2004, 05:59 PM
Hi everyone. My name is Kacee and I just discovered this site. I live in Baton Rouge, LA. I guess you could say I was recently diagnosed with IC. It was last November. I have recently changed doctors and my new one isn't sure that it is that. I had the cystascope with bladder dilation and I couldn't believe it. my bladder looked like a big ole' connect the dot puzzle. I have always had the symptoms, I just thought I had a small bladder. :woohoo: this is what I look like most of the day running back and forth to the bathroom. I have been on 3 different meds so far and I have seen no difference. I just would like to get a complete night's sleep. I look forward to meeting all of ya'll and learning a lot. OH, if anyone knows if there is an IC support group in the Baton Rouge area could ya'll let me know? The only ones I have found are at least an hour and a half away. Thanks
Have a good week
08-11-2004, 07:17 PM
:welcome: :welcome: I am thrilled to be the first one to welcome you to ICN! I so hate having a diagnosis and than have a doctor doubt it. I don't know if you have IC or not but I hope you find out and get the treagtment you need. Even if you don't have IC feel free to come back here....you must have the symptoms and we are here to support each other through this suffering.
I would like to encourage you to look at the http://www.ic-network.com/handbook/
I hope you find a way to relieve your suffering
Let me know if there is anything I can do for do
Take Care :grouphug:
08-11-2004, 10:56 PM
Welcome – I am somewhat of a newbie to this site, but have found SO much help and support here.
I’m sorry for your diagnosis, and no, not sure of help groups in LA. I have personally been relaying on this site myself. Many people find antidepressants helpful for pain & a sleeping aid. I tried Amitriptyline for about a mo. and it eventually gave me such bad nightmares I stopped taking it. However, my grandmother has Fibromyalgia and has taken Amitriptyline for 8 years and only has had the side effect of a dry mouth. It does help her sleep through the night
You might want to look into anti-depressant, they seem to help with sleeping through the night. Good luck!
08-12-2004, 01:25 AM
:welcome: to the ICN!! I'm sorry to hear that you have IC. Why does the new uro doubt the original diagnosis? That must be pretty frustrating, especially since you saw photos of your damaged bladder.
Anyway, I'm glad you found us... you will find a lot of support and information here. I don't know anything about the Baton Rouge area... but perhaps someone will come along and be able to help you out with your support grp. questions.
08-12-2004, 02:05 AM
Welcome from another newbie, only 2 weeks. This has been my lifeline during that time and I have learned so much from other's experiences. You will find great support here. Don't hesitate to ask questions and read, read, read. Unfortunately, medicine is not a science and your recent experience with the new doc shows that. Don't hesitate to keep looking for a doc that you feel confident and comfortable with. Lots of hugs. Linda
08-12-2004, 07:08 AM
Hello and :welcome: to the icn family i'm sorry you have ic but please know it can be treated. please check out the web site katrina gave you above its truly helpful
if you need anything please let us know we are here for you.
sending you hugs and prayers
08-12-2004, 07:33 AM
Kacee... :hi: :welcome: ...So glad you found your way here. :)
08-12-2004, 07:46 AM
Hello and welcome to the ICN. Good luck to you.
08-12-2004, 02:27 PM
Welcome. We're here to listen and help if we can. Please follow through on everything and get second and third opinions if necessary. It can be treated. Don't hesitate to write to us if you have any concerns. This is a wonderful group of people waiting and willing to help all newcomers. Good Luck. Katy
08-12-2004, 07:35 PM
:love: I just want to thank everyone so much for being so kind and supportive. It means so much to me to have people who know what I am going through and who care. How my first dr. found out I had IC, I filled out a questionaire and then they sent me to a urologist. He immediately went in and did a cystoscope and dilation. When I changed drs, I brought him my pictures and he asked me a ton of questions that the first doctor never asked me. He said that I should have had a urodynamic test first. So that is what I have been through the last week. Plus he had me have a pyleogram. I go see him again on Tuesday to get all of my results. I will let you all know when I know. Thank you again for making me feel so welcome!!! :bow: :bow:
08-12-2004, 08:48 PM
Hi, welcome :hi:
08-13-2004, 06:17 PM
Hi everyone I am a newbie. I am so happy that I found this board. I can so much sympathize with you Kacnrob. I just changed doctors after my previous one diagnosed for over a year with ic and then recommended the interstim. When I
went for a second and third opinion they said to me -" An interstim without a cysto".
I thought it was strange too and changed to a new doc in . I just took the cysto
and after a year of Elmiron, Atarax he told me that my bladder can not stretch
over 350ccs. I did the Potassium test with the last uro and it was 50/50 .
Now the new doctor says that my bladder muscles are not letting my bladder
expand and the inside of my bladder looked okay that it does not look like a typical ic patients bladder . He said that their might be nerve damage from my pregnancies. Tif How can this be when even soda bothers me. Flares are everyday dilemma. Now I am so confused, more than ever. I use the e stim just everyday just to ease the pain and I just started the pain killers. My last uro did not give me anything for the pain for a year. Can you still have ic if you have a clear cysto but with a small capacity.
I am so greatful for this board. At least if my bladder showed a lining damage from the ic I would know what I have. Now their is just excrutiating pain most of the
time. I am not sure if I am using the right thread it took me some time to get out
of my depression and start talking about my ic/chronic pelvic pain/Now I don't know what I have. Anyway if I am not on the right thread sorry I will get the hang of this.I am so glad that this board exists.
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