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  • Britgal
    replied
    Hi GolDee and welcome to the IC family, I am in agreement with you, God sending a wonderful group of people, I felt exactly the same way when I discovered the network and then when I started posting. The IC family have made a vast difference in the way I live my life now and the information that you can get from the network and the help and support from the gals and the few guys we have is wonderful. Hope that after all you have been through you can get the right meds to help you out, and you sound like you have a great Uro, take care and welcome Iris hi grouphug

    Leave a comment:


  • gol_dee041
    replied
    Hey guys,

    Thanks for your responses. I have to say again that it feel sooo goood that someone else knows what I am talking about and has felt my pain. I have been on a low carb diet for almost 4wks now and have lost 10lbs and inches. I am hoping that with some of the weight loss it will help that pressure on my bladder. I'm not sure if Uro wants me to stay on Elmiron or not. Will know at next visit. He did tell me to stay on it for now.

    I will keep you all in my prayers. Believe me without prayer and my trust in the LORD I wouldn't have made it through all of this. GOD is good he sent me a wonderful support group. grouphug

    Leave a comment:


  • CoyoteMystro
    replied
    Glad to hear you're beginning to feel better. You've gone through alot of hell, I'd hate to have to experience that. It's great that you have an understanding boss, not many do.

    Good luck on learning about the Diet. To me, the IC diet is confusing. I ate everything and never had triggers until those damned pills my Uro gave me on July 31st, now I don't know. All I know is eating anything triggers my IBS.

    Best of luck.

    Leave a comment:


  • JAF
    replied
    Emerald,
    Thanks for sharing and hope that you can find a treatment that works for you soon. I look forward to seeing you around. You have found a great support systme here and if you ever have any questions or just need a friend, there is always someone around.

    Jolene

    Goldee,
    You have been through the ringer that is for sure. If you have been reading on here you know how important the diet can be. That would be a great place to start. Another thing to keep in mind is that there are a lot of treatment options. Elmiron is one of them. It can take 6 months or longer to know if that is going to help you. It sounds like you have a good uro, that is half the battle. Educate yourself as much as you can. The handbook on this website is a great start. I wish you well and hope you are doing better soon.

    Jolene

    Leave a comment:


  • gol_dee041
    replied
    Hi everyone. First let me say that finding this web site was such a great comfort for me. When I first found out what I was suffering from and tried to tell friends at work none of them really understood. They all kept thinking UTI's and that they all have had one or two in their lifetime. I wish that was all that it was. When I finally went on line and found you guys it was like finding friends that I had never had. Knowing that someone else was going through the same pain and discomfort as I was made me realize that I was not alone. In 2000 I had a bladder lift that was done by my GYN doc. During the procedure I started bleeding out on the table after he had only one side of my bladder lifted. After stopping the bleeding he proceeded to lift the other side and low and behold without him realizing he stitch my ureter tube close. OUCH!!!!! Needless to say I was a very sick cookie. The bad thing was that he did not know that he had done this util 3wk postop and I kept having pain in my right kidney. So after many tests and getting sicker he finally realized what had happen and sent me to URO. Uro thought he could open the U-tube using the scope. Didn't work. I did wake up from that in much pain and he tells me that I must have old fashion surgery to repair. Had surgery, in hospital for a week, came home with tubes,stent and a catheter all stayed in for 3wks. Talk about spasms.YIKES and OUCHES! It was during my recovery from all of this that I learned that I had IC. I kept thinking that it was from all the surgerys that I was having all this pain. My Uro is wonderful and very kind and patient. He explained to me that he had discovered this while doing the first scope and then again with the surgery. I have been on Elmiron, Ditropan and it did not help. I had such attacks and flare ups that I had to go to bed. Thank God that I have a wonderful boss and was able to miss work when attacks were unbearable. Uro said that the surgerys aggrevated it and sent me into full blown IC. So here I am today. Had Cysto-Hydro a wk ago and feel much better. I have kicked the Coke-Cola habit and that has really helped. I haven't looked at diet yet but that will be my next step to living with this. Thanks for listening to me. Looking forward to all of your post.

    gol_dee

    Leave a comment:


  • vm
    replied
    Hey, here's the link:

    http://boards.pathfinder.com/[email protected]/0

    It is at the Parenting magazine message boards. It just looked like such a nice group of ladies there. Like I said, it sucked me right in and I had to make myself quit reading. lmao I don't know how active it is these days, but even reading old messages might be fun for you.

    P.S. My kids are 5 and a half and 2 and a half.

    Leave a comment:


  • emeralds333
    replied
    Thanks so much everyone! I'm so thankful for a place I can go where people can relate. My parents called this morning, all excited because they'd found an article in a magazine for how to prevent UTI's. And I explained for the millionth time that it isn't UTI's. But they were trying to be helpful and I appreciated that.

    Kim, my kids are ages 14, 12, 11, 3, and 4 months old. It's a handful and I'd love to have the addy for the group with 5 kids or more!

    Kellie

    Leave a comment:


  • vm
    replied
    BTW - I was bored and poking around the Net last night. I ran across a message board for moms with 5 or more kids. It was so interesting I read for about 30 minutes. LOL If you are ever interested in the link, let me know.

    Leave a comment:


  • vm
    replied
    Thanks for sharing your story, emeralds! It is nice to know more about you. I didn't know you had so many kids. What are their ages now?

    Leave a comment:


  • ICNJess
    replied
    Hey Emeralds--

    Sounds like you have been through quite a bit already. I was on a high doseage of Vicodin, and now a low one of Percocet, but it isn't helping, so I am in the same boat as you. I didn't have luck with Elmiron, and though the Elavil worked for awhile, it has worn off and I can't take it anymore. The instills were nightmares!!! Now I'm going on to Interstim for the urgency/frequency/urge incontinence. IC is rough! I see a pain management doc, and it is the best thing in the world! He understands that I am going through pain and that I need help, and he is more than willing to help! My uro was verrrrrrrrrrry leary of prescribing narcotic pills, and the pain management doctor wants to! It's like night and day! Anyways, I wish you lots of luck in treatment soon, and I'm sure I'll see you around the message boards!!

    Gentle hugs,
    Jess

    Leave a comment:


  • Britgal
    replied
    Hi and thanks for sharing your story, do hope that you will both start feeling better soon, I agree that anybody who has not suffered the pain of IC has no idea what it is like. I had two children and a miscarriage and never had any pain as bad as IC, take care and hope the pain meds work for you, hugs Iris grouphug

    Leave a comment:


  • patticake
    replied
    Hugs to you and hope you get to feeling better. grouphug grouphug grouphug

    Leave a comment:


  • auntiedeb
    replied
    Thankyou for sharing your story with us and I hope that you feel better soon. coyote- hope you feel better soon. Please keep posting and let us know how you are doing.

    Leave a comment:


  • CoyoteMystro
    replied
    Thought I'd make a small post, because, like you, I'm also waiting for a pain pill to kick in.

    Sorry to hear you've been going through so much pain, but I'm glad to hear you've experienced remission. I never have yet and being seven years with IC, I'd love and be afraid to have a remission.

    Dunno what else to say, hehe, hope the pain killer kicks in. grouphug

    Leave a comment:


  • emeralds333
    started a topic My Story

    My Story

    Well, it's almost 2:30 a.m. and I can't sleep so I thought I'd "write a bit" while I'm waiting for some pain med to kick in.

    I started having alot of UTI's from about 16 on. One thing I have thought about is that I had severe acne as a teen and I was on Acutane (sp?) for quite awhile. While it did help my acne, what it also did was start up alot of my IC symptoms........pain in my bladder and vagina. I was very "red and irritated" and so the dr took me off of it. Had never seen this side effect where it would "dry out the vagina".

    And so the years went by, as with a few pregnancies and births. And right along with, of course, UTI's every time I turned around. (I later found out that most of these WEREN'T UTI's, they'd just throw antibiotics because I had the symptoms, but it never really helped.)

    I did go to a Urologist in desparation after my third child was born. He was terrible. Not a very good bedside manner. I was scared to death anyway and two of the first questions he asked me was if either my husband or I had had sex with someone outside the marriage and if we practiced anal sex. I was horrified! He started me on treatments of (I'm not sure what you call these, the instills?) a cocktail he'd mix up and put in my bladder. The ones that leave you smelling like garlic? It was once a week, the nurse did it, and I would have to hold it in my bladder for 20 min or as close to that as I could. It felt like acid. I'd leave in tears. It was horrible. I stopped going.

    After my fourth child was born, it hit horribly. I kept calling the ob/gyn, with symptoms of a UTI, he gave me about 5 rounds of different antibiotics and suggested a urologist. I was terrified. The symptoms calmed down. I thought the worst was behind me and hoped all would be okay.

    Right before my fifth child was conceived it all started up again. Horrible pelvic pain, bladder urgency, everything. A new gyn suspected IC and consulted a different urologist than the one I'd previously seen and sent me in. I was diagnosed within the month and was just about to start treatment (Elmiron) when we found out I was pregnant. While ON birth control pills. It was probably antibiotics that did it but it was a horrible pregnancy. The urologist tried to "help me through the pregnancy" as best he could but I had to wait until I'd had my daughter before we could really start treatment.

    I've been on Elmiron and Elavil for 4 months now. No results yet. We started atarax last week. I'm praying the elmiron will kick in soon. He keeps saying we're going to have to try instills if we don't get results soon from this but I really don't want to go that route again.

    Worse yet, the Vicodin I've been using for the past 10 months to manage the pain stopped working. He put me on Percocet, but a low dosage. He just wasn't comfortable with anything stronger, and so I have an appointment the second week of september to see a pain management specialist. I'm praying it's a good one as it's the only one in this small town.

    I'm praying for a remission. I did have one about 3 yrs ago that lasted about 6 months that was WONDERFUL. I felt normal, for the first time ever. And I hold on to hope, every day. This board has been a Godsend to me, as unless you've been there, most people don't understand.

    Thanks for listening to my story, and for all the times you've helped me through the hard times. I've learned so much through this board. And I'm thankful for that. It gives one the hope and the knowledge they need to try to have as normal of a life as they can.
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