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  • here is my story

    Hi everyone, i found this support group through my Doctor. So i have Ic and let me tell you that this has caused me to feel so down, i'm only 26 years old and i can't believe this is happening to me. I was always a very active person never was a sick person really, now i feel that my life will never be the same again. I've had Dmso treatments and take vistarel, detrol and prelief. At the begining it wasn't really that bad i have constant pee breaks but i could handle it, now Omg!!! its out of my hands i'm always taking pee breaks have this crazy diet but nothing seems to work. My doctor saids please be patient it will get better, but my question is does this get better???please help me feel better no one understands this, my boyfriend is not understanding he thinks that its not a big deal, he's used to seeing me happy and active and now i'm home and don't want to go out because i know that i will be peeing the whole night and then the pain sucks!!! please feel free to give me some advise on things that work i'm so glad i have this support group.

  • #2
    Hey hunnie,

    I'm only 20 and I was dxd last year in sept. I struggled for 2 years before getting dxd. This disease stinks, especially for us youngens. We have so much to look foward to but now it seems as though we might have a bumpy road ahead of us due to IC. Like you dr said it does take time to see what combinations of meds work for you. Everyone's different. there's no cure yet but there are meds to help us get our lives back.
    Alot of people here have had or still are having a hard time explaining Ic to friends and even family. My bf didnt understand the pain I was in. Untill I was up late everynight peeing and crying. Some women here have printed out info or posts from this site to show their spouses exaclty how much pain we're in. That's a good start to show your bf how you're hurting. Also you could have him join you to a dr visit! It's really hard to deal with this stuff but we are all here to help you along th way. dont ever give up... keep on trucking and with patience you will improve.
    Instills didn't help me, I'm on Elmiron... that's helped me improve alot and Elavil too. did he give you something for the pain?? It's very important that you do have that. Remember that your not addicted to them, alot of people think we are addicts. We take pain meds to get back our lives... not for a high!!! If you ever need to talk, please pm me. Hope you get better soon!

    Rachel
    ***Rachel***

    Dance like no one is watching
    Love like you've never been hurt
    Live today like it's your last

    Dxd with IC in June '06

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    • #3
      thank you

      thank you so much for your words, yes i will ask my Doc on some different meds...i know i'm not alone i just wish their could be a cure for this.

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      • #4
        I am also 26. I was diagnosed just after my 25th birthday in August. I really hope that you can, as you say, get your life back. I was a very active person too. I liked going out and now I rarely ever do. I have been married for almost 2 years and my husband did not understand at first. It took him talking to my doctor after my diagnosis for him to sort of get it. That was 7 months after I started having excruciating pain.
        I think that the diet and medications have helped me a great deal. I am still in pain all the time, but I take MS Contin which dulls the pain and I have hope that I will feel better in time. A lot of people on this site say things like, after 3 years of dealing with this I can finally do things I thought I wouldn't be able to. For everyone, symptoms and pain levels vary, but I thought at first that I would have to get my bladder out. Now, I am hoping to go into some type of remission or that doctors will learn more about treatment for IC.
        I also want to add that although my husband believes me now about the disease he is not ulta senistive about how I am dealing with it. He will go a week and a half or longer without asking how I'm feeling or anything like that. I think some men just don't like to accept that things aren't the way they'd like them and would rather not take a lot of time talking about them. It doesn't mean they are bad people. They just cope differently.

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        • #5
          A guy's perspective

          I don't think your husband is a bad guy either. He just can't relate to your pain and what it does to your quality of life. My wife is having trouble with me in a similar way. She is very concerned but she doesn't know how to react to me, and tends to isolate me somewhat more than I would like. I think if our spouses could crawl inside our skin for 1 second, they would understand. But I wouldn't wish this on them, or anyone. I do wish my doctors could feel our symptoms.

          I also think your husband may be having trouble with this because, on the surface, you appear healthy. I know that my co-workers don't understand my condition in a similar way, because I am still upright and working (even though I grit my teeth at times). I call this, "putting on my game face." And that gets old too. But my guess is that many others I work with have "game faces" on for other reasons.

          Also, your husband may resent what your condition has done to yours (as a couple) and his quality of life. It is a little selfish, I know. But I think it is human nature.

          Hope this helps from a man's perspective.

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          • #6
            I didn’t know what hit me at first. It all seemed too fast. My husband was exasperated. I was checking where the bathroom was everywhere we went. I went before I went into the store to shop and when we were leaving the store. I basically had to yell at him to get him to stop the car so I could go to the bathroom. I never knew I had to go until I was ready to pop and I really couldn’t hold it. I was waking up at least every 90 minutes to go to the bathroom. I would get to sleep and then I would wake-up go to the bathroom. It took me at least 15 minutes to go back to sleep. I was getting less than 5 hours of sleep each night.

            I didn’t have any real pain so I don’t think IC was suspected. I was treated for over active bladder at first but Detrol didn’t do a think. Because of the “Walking Farts” my gyn was very concerned and referred me to 2 different urogynecologist. When I was diagnosed with IC my gynecologist said he would never have made the connection.

            I just want you to know there are answers that I know will help you with your symptoms. I was very fortunate. My treatment is 100% effective. I didn’t have a clue about IC before I was diagnosed. I had never heard of it. When my urogyn told me I had IC, I said, “I have what? What is that?” When you find a doctor that will work with you I think you will have a different attitude about living with IC . In the meantime just keep posting. You will find support here.
            Last edited by L. Thomas; 04-06-2007, 06:00 AM.
            TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
            My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

            Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
            Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
            I post to encourage and offer total support for rescue instillations.
            Find me on facebook: L. Clark Thomas
            Louann

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            • #7
              It's great to hear someone say their IC treatment was 100% effective. I am really struggling. I cannot wait to have children, but I need my pain killers. I wouldn't be able to make it through 1 day without them at this point.
              Funky IC, it was nice to read your reply. I feel like we can sort of relate to what each other is going through. I feel ignored at times too.
              I like what you said about the "game face". I am always trying to give the briefest explaination of IC that I can (to explain the diet) - like certain foods cause me to have inflammation. I wish people knew what it was.

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              • #8
                Sometimes it takes a while, but most of us with IC do find effective treatments and manage to feel good most of the time. I find diet to be a very important part of controlling my symptoms.

                Warm hugs,
                Donna
                Stay safe


                Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                Have you checked the ICN Shop?
                Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                Patient Help: http://www.ic-network.com/patientlinks.html

                Sub-types https://www.ic-network.com/five-pote...markably-well/

                Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                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.
                [3MG]

                Anyone who says something is foolproof hasn't met a determined fool

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                • #9
                  warmest regards!

                  Here's to a much better day! Indeed, apparantly there is hope out there since I have been seeing posts for remission! So probably the most important thing in the struggle with I.C. is your perspective on it, and how you are coping. The complete difference between how you felt when you thought you were all alone, or not sure about what was making you feel this way. In comparison, to finding the answers, being in a support group like this, and having faith that tomorrow will be a better day! And of course, all of the resources to actually make it so! Personally, I feel that makes all the difference in the world. Being on here, I always learn new things, and everyone is so awesome, always! So no matter how bad the I.C. gets for you, there is never a question left unanswered. And clearly, never a lack of opportunity for relief! (however small or large it may seem). Warmest regards and all the best of health, wellness, and perspective too!
                  Love is a fruit in season at all times, within reach of every hand. ~ The Blessed Mother Teresa

                  Status: Diagnosed October 2006 via cystoscopy with hydrodistention. Max anesthetized bladder capacity only 250 cc's. Mast cells and pinpoint bleeding found.

                  Remission for me means less pain for more days than not. Frequency is inevitable with a bladder this tiny! That is ok though. The difference between when I was diagnosed and now, is that I have embraced that fact. Me and the loo, we are one.

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                  • #10
                    IC can be a very frustrating thing, but as cheesy as it sounds it is very important to stay positive. I am NOT saying this is all in our heads, far from it. But I actually read a study thats says people with IC have smaller glads that deal with the stress hormone or something like that. It was all very technical, but basically I understood that our bodies do not deal with stress very well. So, stressing out about anything, such as why we aren't getting any better, will only serve to make us feel worse.

                    So please try to stay positive. I am a success story... kind of. I got IC when I was 15 (so 26 is definately not too young), but after hydrodistention and meds I went into remission. Now its back, but I'm sure I'll get back into remission, hopefully soon!

                    ~*miz_sunshine87*~
                    19 y/o student, salesperson, fashionista, future high school teacher. <3 to sing and travel. Dream job= cruise ship entertainer
                    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                    My IC story- diagnosed at age 15 (Feb 2004), after approx. 6 mos of symptoms. Went into near complete remission following hydrodistention and introduction of meds. Feeling so good that I started skipping meds (bad idea). 1 week flare (May 2006). New flare November 2006-present.
                    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                    My triggers- I'm not sure about food triggers, just started IC diet but so far doesn't seem to be doing much. Stress is a big trigger for me though. Both flares this year came during stressful times. I think that stress reduction will help me immensely (last flare went AWAY during vacation in Mexico when I was drinking margaritas like they were water;P).
                    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                    Start of IC symptoms- Summer 2003 (after a UTI)
                    Dx- February 2004, after hydrodistension (ouch!)

                    Current treatments- Amytriptyline (25mg), Hydroxizine (25mg), MSM w/Glucosamine (1000mg,3x/day), quercetin (500mg, 2x/day), trying to stick to IC diet, prelief as needed.

                    Previous treatments- Amytriptyline (10mg), Hydroxizine (10mg), Alesse (HBC)

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