Interstitial Cystitis Support Group

hello everyone!

since most of us developed ic at a later stage in life we thought that the young adults here would appreciate a place where they could talk and share their experiences with ic that started at a earlier stage in life. dont be shy, ask each other questions, share ur stories and get to know everyone. and last but not least enjoy!

hugs,

blondee

Hey everyone. I'm almost 25 years old and was just diagnosed with IC. Before being diagnosed I began to feel as If I were losing my mind. All year doctors bounced me around with no answers and no feeling of relief. Not emotionally or physically. From AL I went to Orlando to see a doctor at Watson Clinic and for the first time I felt I wasn't crazy and someone understood my pain. Before traveling to Orlando a doctor told me I was going to need a hysterectomy and because my pelvis was so severally inflammed they diagnosed me with pelvic inflammatory disease, all without doing proper tests. I have a toddler and some days it is so difficult to keep up with her. I also have endo and arthritis. It is a fight to make myself sit through a full movie at the theater or sit through a meal at a restaurant. The pain is so intense. Some days I don't want to get out of bed. When I was diagnosed I felt a sense of relief in a way because there are people out there who understand what I'm going through. My family and friends have been extremely supportive but there are times I just feel alone. My significant other felt I wasn't attracted to him anymore because being intimated is not always the easiest thing. Emotionally, I often feel so down. Nothing has helped with my pain and I'm wondering If I will ever feel even an ounce of relief. It's sometimes very hard to think positively because mostly its hard to look past this pain. I watched the cystoscopy. We saw the bladder looked so nice... Then we spotted these white looking thick veins and when the doctor filled my bladder to as much as I could take those veins turned into thick wide rubber band looking things that were working against my bladder. Slowly my bladder started bleeding. He's doing a biopsy next month and I'm very nervous. He's also going to fill my bladder to the most while I'm asleep and see how bad it gets. How do you handle all of these things? It seems like its always something. If a day comes when I feel well enough to do things I push myself too much. Its difficult for me to adjust. There are so many things to do and not being able to do them isn't something I'm adjusting well to. Being a stay at home mom and housewife doesn't leave a lot of time. I want to work but it's so difficult to right now. More often then not I feel at the end of my rope.

I too felt like that now that I have had IC for awhile (years) I still over push my self its like what can we do hide under a rock some days I wish I could... Next week I am having this "surgery" again as my bladder has been bleeding and can see it when I pee I hope ur days get better as now that u know what it is and I hope the dr's can help find something that works for u.... Stay strong!! (some days it's to hard) but remember we have good days and bad I wish for better days!!!

Thank you so much!! I hope things go good with your surgery and they can help you. This group gave me a feeling of relief, just knowing its there. It's a scary process and it seems never ending, it's nice to be able to talk to people who understand. It's a great support system!! Good luck to you, God bless

Surgery went ok... I'm in a lot of pain today and was told the next 2 weeks are going to be the worst more so the first week than the 2nd week.. Bladder is at its worst they couldn't fill my bladder as much as they wanted to as the bleeding got worse.. Time to take it one day at a time and stop pushing my self.. I should know more about what's going on with my IC in 4-6 weeks

You are in my prayers.