interstitial cystitis pain

You have Interstitial Cystitis!!

That was very scary the very first time i heard those words. I also had endometriosis. So I had a hysterectomy to "cure" that, when I went back for my 2 week check up. I told them I was still bleeding just as bad and that the pain was much worse. That's when he said those words. that hit me every morning the second I open my eyes and try to move! that was 4 years ago. After tons of research and as many specialists. I still feel just as lost. Your whole life changes, the old playful you is gone. It took me a couple of years to get my head together to adjust to the new me, bury the old one and move on. I still work, lucky for me I'm a hair stylist so the hardest thing i do is bend at the sink and stand.I usually work 6 hour days, Saturday's I work 7 but if I have no appts, I have the luxury to go home. Doesn'tsound like much work, but at the end of the day I'm often to exhausted and to much in pain to even drive myself back home, often my husband comes for me. I'm grateful for him to! I wanted to write this hub even if I can help one person ease into this better than I did. Then I would feel that the daily suffering would somehow be worth it. Or the why me would be explained a little bit! Your probably thinking get on with it woman! So, most times but not always. If your like me a whole host of other diagnosis's will follow or started with them. I'll tell you a few that I got so lucky to have. Fibromyalgia-this one brings on a whole new meaning to exhaustion and pain in every muscle and joint even in the ones you didn't know you had, and migraines so hatefully bad that you don't think you'll live till the next commercial, that is if you were able to have the TV on, no you'll be in a cavelike bedroom with a washcloth and a blanket over yur face, and on the back of your neck, trying not to cry because that will make the pain worse, but you just cant help it. all while your praying for death, and no amount of medicine will make you feel better. But maybe that's just me:) also there's Chronic Fatigue Syndrome, and Immune System Dysfunction and more that I cant think of this second, you can thank Fybro for that one. I Cant remember hardly anything any more unless its hours later and whoever i was trying to tell is in bed:) You'll also be told my many many Dr's early on that's all in your head and maybe your depressed! Trust me its not and your not. We know when theirs something dreadfully wrong with us. You end up in the ER so often they know you by name and most of them just think your searching for some really good drugs, which your also not you just want the pain to come down even a notch, so your at leastin a standing position and not doubled over in agony. I will also tell you some very good books web-links and associations you can join. Support groups are very helpful to join but most times people are to sick to come that night and they eventually get cancelled all together. I tried to start one early on, because you feel very very alone. And think your the only one because its not a common disease ( the medical profession will call it condition, not a disease, i think when something can ruin your life its a disease) and good luck it is very hard to start one because its to hard on you, because you just need to rest. Try your best to walk or excercise as best you can at least 3 times a week even a small walk every day would be helpful, eat right according to your ic diet everyone is different our bladder will let you know what you can and cant eat, Rest as often as you can, Relax, you'll learn in time to love the new you again!