I was just recently diagnosed with IC. It is such a shock and very painful. Will I always feel like this? I am currently taking Elimon for about 2 weeks along with bladder installations. I thought I was feeling better for about two days, then started my period, which brought on more severe pain. Does this happen with this disease. I would love to meet someone with this disease. I live in macamb county Mi, and wonder if anyone knows of a support group with the area. I also wonder if I cause some of the pain, example is cheating alittle on my diet. My doctor is not to fond of giving narcotics for pain, and tynelol does nothing. How can a doctor not help with pain, I feel it is because they dont feel what I feel inside. The pain has taken my life over and I dont want to feel it. I am now scheduled for a laposcopy because my doctor feels there might be an underlying problem. I think he is checking for endrometrious (spelling is bad, sorry). Should I wait on this procedure and give this medicine called Elimon more time? Or should I go through with this surgery. Scared, and dont know what to do. I read food, stress, sex, hormores are all triggers. Dont no what a trigger is for me because I am in a flare stage. Should I be feeling better, or does someone think doctor is right, maybe another problem. Doctors says he is positive I do have IC, had the tests done.
HI and welcome as a newbie, I know it is tough. You feel relieved to have an answer for your pain but also the reality of living with IC can be consuming as well. NO you will not always feel this way. In time most find coping tools and the right combinations of treatments to control their symptoms. There are many treatment options and even many things you can do to get through this tough first stage while your finding what works for you!!
Most of us have more pain with our cycles or with ovulation too. Elmiron takes a while to work since it works as a bladder coater etc. It can take months to really notice a difference so stick with that too! Our website on MOARK IC had many articles and links to help you get started on the right track as well. Diet is a huge part of your pain issues and yes you could have hurt yourself some by going off. It is like pouring alcohol on an open wound! There is a section on diet under newly diagnosed on the MOARK IC site as well. Fee free to message me any direction questions I will help you as I can. It can feel overwhelming at first, I know I was there. Hang in there and it will get better!!
hey my name is casey i'm 28 years old i haved ic for 6 years now and boy do i hate having it. simedays the pain is so bad that i want to say in bed. umm you can try taking a baking soda bath i know it sound crazy but it does work and try drink one or 2 teaspoons of baking sods it works to but very nasty. its the same as if you were injecting it stright into your bladder, i know what you are going thrugh. i don't work b/c of ,my problem i have been on elmorion for almost 2 months now and can't tell a differnce yet. i have done bladder surgerys, i have tryed alot of stuff and i'm to the point i don't know were to turn anymore. so just put it in gods hand and he will take care of you. if you have a nyquestion feels free to ask me i will try and help you the best i can . casey
I understand how painful IC can be. I can not work either, however because
a chronic uti in the many many calcifications in my kidneys complicate my IC,
we have come up with many new coping tools and treatment ideas. I would be glad to talk to you about what you have tried and what has not work and give you some of the
things I am doing that are really helping my symptoms etc.
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