No announcement yet.


  • Filter
  • Time
  • Show
Clear All
new posts

  • story

    Hello... i was dx with IC in 2001 been fighting it ever since, I think I really been dealing with it all my life and just didnt know it. nothing works watching certain foods help but only short time. There is no real support group in this area so i posted about it on fb and someone i knew in high school emailed me to tell me she also is fighting and we call and get together to have a support group of our own. I have taken medicine after medicine and some dont work some make the pains worst and others will work for short period times then Im right back where I started. wish there was more answers.
    Its hard to plan you r life around this its hard to be who you are who you want to be. There are humiliating moments there is times you just dont want to move. Everyday im in pain i wonder why god has done this to me.
    I think its sad that when you walk into someones home or a restaurant you have to spot out the bathroom. Hope you dont have to go often that some one will notice. No one knows how it really is. I have heard from some ppl say that I over exaggerated this problem but unless you are going threw it you just dont know. Right!

  • #2
    It is very hard to live with especially since we all look fine, it is a silent pain for us because unlike other ilness/disease that people can clearly see or don't mind talking about like diabetes, etc. Who really wants to talk about their pee and pee problems and really who wants to hear about that either! I feel like not talking about it to family/friends means to them it is not that bad. That the pain doesn't consume my life when in fact it does. I am a newly divorced single mom of 3 and there are days I just can't get out of bed but have to as I have no other choice. I have been diagnosed for 10 yrs and 12 with Endometriosis. My parents live in my town and are the nosy kind with no boundaries and just don't understand. They don't like all the pain meds it takes for me to function...hello, neither do I but I don't exactly have a choice now do I? They are always suspicious and wanting to know what drugs I'm on now and why don't they have a cure and is it really real? They go out of their way to say they hope I don't become an addict. I've been reliant on pain meds for yrs and of course my body would experience withdrawls if I stopped taking it but there is a reason I take it, for pain and if I stopped the pain would be agonizing. I asked the other day while my car was in the shop if I could borrow theirs to take my son to the Dr and they said no that I couldn't because of all the pain meds I'm on that they don't think I should be driving any car period. Its been 6 yrs now and your body adjusts and it no longer makes you high or drowsy it just makes life bearable. I'm so tired of it I just keep to myself but I would love to talk about it and have their support. Most people don't even know I have it. I know they can't understand and its embarrassing and I don't want to be judges for taking pain meds 24/7. You are not alone. We all suffer and a lot in silence I think. I lost a marriage largely in part to no longer being super woman and super mom and not having the perfect house and not feeling like going out and not to mention never being able to have sex with my husband without days of terrible pain. I've done all meds, instillations, diet, etc and nothing works for me so it always ends up being the same answer which is to treat the symptoms, the pain with pain meds. I have an internist who is great and understanding and I have a pain specialist who I see every month for my pain meds and talk therapy. I get by but I do not know a single person who has IC or anyone who bewgins to understand it and it is very frustrating and no, it is not fair as life usually isn't. I would love ri know your story and what is/isnt working for you and how you get through each day. I hope you are having a good day without too much pain. -Cassandra


    • #3
      I am so sorry that you are being judged by so many! you are correct in that it is so hard to deal with the pain of IC, and on top of that you are being judged by those closest to you. I am sending you all of my love and support...I hope you feel better each day and find support from many of us here.
      take care,


      • #4
        Hey guys. It is hard. My grandmother once said I looked fine and accused me of faking. It is hard not to think of that at 3 in the morning when I am going out of my mind needing to pee but having nothing in my bladder. My mother has let me down as well. Once when I was in agony I went to her boyfriends house to find her because I needed a hug. She admitted they heard me and chose to ignore me. Who does that??? IC has shown me who my real friends are.

        I can't IMAGINE having 3 kids with IC. You are super mom to me!!!
        Frequency/Urgency, Mild Pain, Spasms, Pressure

        I have tried:
        Bladder Spasm medications and antidepressants - all cause mydriasis
        Antihistimine - Mydriasis
        Cyclosporine - side effects
        Elmiron - side effects
        Botox - can't pee but need to all the time
        Mild Hyrdo
        My 11 year old german shepherd taken away because I am no longer able to care for him. Feeling yet another failure.

        I am trying:
        Omega 3
        IC and anti oxalate diet but staying on Cystoprotek
        Acacia Fiber (helping some)
        Hugs and Kisses from my German Shepherd