Thread: my i.c.
08-01-2005, 08:06 AM #1
Hello my name is tabitha and I am 21 years old. I have a 2½ yr. old daughter and a loving husband and friend of 6 yrs. I was diagnosed with I.C. on July 8th after years of people and doctors telling me that it was all in my head and I was too young to be having the problems and pain that I was having and because no tests that they ran came back with any answers, it had to be me and my imagination. My pain and problems started when I was 13 years old and becoming a lady set in. I have always had severe pain with that time of the month. It became normal when that time of the month came and I was bed ridden for at least 2 weeks from the pain and vomiting that came with becoming a woman for me. I have severe pain in my lower torso from the belly button down to my mid thigh. I already had certain foods and drinks growing up that I knew would cause me pain so I just avoided them. Things I never thought would turn out to be an illness did. Physical activities would always run me down sooner it seemed than anyone else my age and I was in fairly good condition. They always said that it was in my head, or I was over weight, or anything but oh you may be sick, there may be something wrong after all. After tests and other diagnosis turning up empty handed on results, I gave up and decided to live with my pain. That is until this year when my mother, a 40 yr old very out going and strong woman, had a flare up of what they thought to be stones or something. She was said to be in the most pain she had ever experienced worse than all three births that she had been through. After many hospital visits and tests she had her answer to her pain and it was I.C. and a severe case at that. Because she had I.C. for so long and it was never found her bladder was in terrible condition nerve endings damaged and a lot of blood in her urine. It was indeed I.C., Well back to my story. My mother and I all of a sudden had a lot in common. Now for most daughter and mother relationships this would be a great thing but the thing my mother and I had in common was pain, and where the pain was, and what foods and activities caused the pain to get worse. I didn’t want to wait till my symptoms got to be as bad as hers did. And since she had a name for her pain I went to the doctor and asked, almost demanded, that they test me for I.C.. Of course this meant seeing an urologist, and having what I later found out to be a hydro distention and cystoscopy. He also inserted a medicine that I believe was clorpactin. After going through this he then said that I do indeed have I.C. and it was moderate and would need meds to help through it. This was done on July 8th, 2005, and since then it has been really uncomfortable for me. The first week or so I was on bed rest except for the constant restroom break. After that I would come out to pick up the house or play with my daughter. It still is hard to get around a month later but I’m taking it a day at a time. I forgot to mention earlier that my doctor has me on 100 mg of Elmiron 3 times a day and 25 mg of amitriptyline taken at bedtime. I also take 2 tablets of preleif when I eat something. Although there is still a burning sensation when I urinate and stomach pain when I walk to much or bend the muscles of my pain zone. I am thankful that something was found and it is no longer something that is just in my head. I look forward to chatting with people who actually understand what my daily life is like. Although my family is helpful they admit they cannot imagine what I deal with on a daily basis. I really hope that being a part of this site will further teach me how to manage my I.C..Thanks for reading my story. TabithaS.
Last edited by TabithaS.; 08-01-2005 at 08:31 AM.What doesn't kill me only makes me stronger!!
08-01-2005, 08:26 AM #2
Welcome to the IC Network!
I'm glad you found us. There's a lot of information and support here. I suggest you read the information in the Patient Handbook at http://www.ic-network.com/handbook --- you'll find the IC diet there, which I suggest as a good starting point for you in controlling your IC symptoms. You'll also find information there about the various treatment options.
Elmiron can take up to six months or more to become effective, but for some it has meant a new life.
Sending warm healing thoughts,
DonnaHave you checked the ICN Shop?
http://www.icnsales.com for US & Canada
http://www.icnshop.com for all others
Patient Help: http://www.ic-network.com/patientlinks.html
Diet list: http://www.ic-network.com/diet/2009icdietlist.pdf
You'll find my story at: http://www.ic-network.com/patientstories/donna.html
I am not a medical authority nor do I offer medical advice. In all cases, 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.
Anyone who says something is foolproof hasn't met a determined fool
08-01-2005, 08:49 AM #3
- Join Date
- Mar 2004
- Viera, Florida
Just wanted to add my hello to the ICN--you will find a circle of support and fellowship on these boards.
Hugs and ,
Barb(Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)
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08-01-2005, 08:52 AM #4
08-01-2005, 11:02 AM #5
Tabitha, to the ICN!!! I had my first symptoms at age 13 too....after a bunch of tests that showed nothing I stopped complaining...so by my diagnosis was a moderate to severe case...
http://www.ic-network.com/handbook/ this is an essential link for everyone with IC. It is very informative on meds, living with IC, and self help....take a look!!!
http://www.ic-network.com/forum/sho...90935#post90935 Newbie kit from the oldies to the
http://www.ic-network.com/forum/showthread.php?t=7562 this link is a pain managment post.
The second page has 4 attachments...the last one is a list of ideas for IC pain.....take a look if pain is problem for youFaith, Hope, and Love,
I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back! My hope story http://www.ic-network.com/patientstories/katrina.html
IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we 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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firstname.lastname@example.org please contact me...I am here to help!http://health.groups.yahoo.com/group/ICinWI/ if your from WI please contact me!
08-02-2005, 05:26 AM #6
I just wanted to say thanks for the warm welcome. It really helps alot to know that you all are there.. again thanks TabithaS.What doesn't kill me only makes me stronger!!
08-02-2005, 07:31 AM #7
Tabitha! I have been on Elmiron (in combination with some other meds) for about 4 years now and it has definitely given me my life back. I hope it helps with your discomfort, too.Kim
Diagnosed August 2001
Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)
Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)
My IC story: http://www.ic-network.com/patientstories/kim.html It's very outdated now. I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.
“We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl
“You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy
08-02-2005, 12:42 PM #8
- Join Date
- Aug 2004
Welcome. You will find alot of helpful info. here.
08-03-2005, 07:52 AM #9
thanks for the welcome mags and vm.What doesn't kill me only makes me stronger!!
08-04-2005, 09:33 AM #10
i am so happy to report that i have found a specialist in I.C. near me. well 2 hrs away but that is better than 8 ,the distance that the other specialist is, and they have agread to see me on sep. 2th. i hope now that i have found a doc. who knows about ic i will be able to get the right meds that i need to be taking to help with my symptoms. for anyone else looking i called EMORY and they refered me to a doc who has benn dealing with ic for 15 yrs. thanks TabithaS.What doesn't kill me only makes me stronger!!
08-05-2005, 06:44 AM #11
I was too young to be having the problems and pain that I was having and because no tests that they ran came back with any answers, it had to be me and my imagination.
I can definalty relate. Me, being 15, I've been told many time that it was all in my head and that I couldn't possibly have anything serious. It really hurt. Even after the Cysto/hydro, doctor's were still skeptical of my IC.
Welcome to the IC-network!!!
So sick and tired of bein' misused
You're taking me down with all your mental abuse
And I said, I gotta get you outta my head
Everybody's always trying to look me over
I just wanna live simple and free
I just wanna get away
Saving all your bullsh*t for another day
I'm the only one that can rescue me from me
2 more years of hellschool.
just ask to be added!
08-05-2005, 07:51 AM #12
Hi Tabitha and welcome to the gang!! I know you will find so much support and down-to-earth practical info here from people that is just amazing. This place has made such a difference in my outlook on dealing with IC, it's just incredible. I went from a "why me?" attitude to a "it's not going to get the best of me" attitude just from the support and friendship here! And I believe it's made a huge impact on my physical well-being!!!
Hope to see you around the boards!
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