newhope07
12-13-2006, 06:23 PM
Hello! I am new to this board. I'm 35 and live in NYC. After a very long journey, I was diagnosed with IC about two months ago. I suspected years ago that I had IC, but because my flares responded to antibiotics, and because for a time they went away, I decided I didn't have it. I was only diagnosed after having an episode that started with a flare and spotting a year ago, which led to a laproscopy for endometriosis, followed by return of IC symptoms two months after the surgery and a complete dismissal by the operating gyn ("you're peeing a lot because you're stressed out").
Miracle of miracles, after being blown off by my gyn, I stumbled upon a fantastic urologist who I found on Google. After two months of Macrobid to rule out a long-term bacterial infection, he diagnosed me with IC after injecting potassium through a catheter (ouch! I couldn't sit for two hours afterwards:P ). I was upset at the time of the diagnosis, but he said he was one of the most mild cases he's ever seen because I told him I can usually go four hours without peeing.
Anyway, he also started me on phyiscal therapy for the pelvic floor muscles, and that is turning out to be a good experience as well. I understand my body a lot better now. My phys. therapist suspected vulvodinia, so she sent me to a wonderful new gyno who has put me on some more drugs and a hormone cream to deal with the vulvodinia and other issues. Everyone is optimistic that I get everything under control, and I feel empowered now for the first time in a year. It feels great to have my suspicions vindicated. Back in July, I wanted to amputate everything below my ribcage, but now I have hope again!
So I've been on Elmiron and physical therapy for 6 weeks now. The jury's still out on the Elmiron, but at least I haven't had any bad side effects. After feeling a lot better initially, I am back to feeling slightly bad. I have read that with PT, you get worse before you get better, and I'm still trying to figure out which sensations are caused by my bladder and which are caused by my muscles. I'm also trying to figure out which foods are triggers.
I should add that I also have IBD and several diagnosed tummy disorders, which I mostly have under control. I also have Hashimoto's thyroiditis, although my thyroid levels are even right now. I realize that having one autoimmune disorder makes you prone to having others, and I'm aware of the IBD connection as well.
Anyway, sorry for the ultra long post, and thanks for reading! I'm so glad to have found this group!
Miracle of miracles, after being blown off by my gyn, I stumbled upon a fantastic urologist who I found on Google. After two months of Macrobid to rule out a long-term bacterial infection, he diagnosed me with IC after injecting potassium through a catheter (ouch! I couldn't sit for two hours afterwards:P ). I was upset at the time of the diagnosis, but he said he was one of the most mild cases he's ever seen because I told him I can usually go four hours without peeing.
Anyway, he also started me on phyiscal therapy for the pelvic floor muscles, and that is turning out to be a good experience as well. I understand my body a lot better now. My phys. therapist suspected vulvodinia, so she sent me to a wonderful new gyno who has put me on some more drugs and a hormone cream to deal with the vulvodinia and other issues. Everyone is optimistic that I get everything under control, and I feel empowered now for the first time in a year. It feels great to have my suspicions vindicated. Back in July, I wanted to amputate everything below my ribcage, but now I have hope again!
So I've been on Elmiron and physical therapy for 6 weeks now. The jury's still out on the Elmiron, but at least I haven't had any bad side effects. After feeling a lot better initially, I am back to feeling slightly bad. I have read that with PT, you get worse before you get better, and I'm still trying to figure out which sensations are caused by my bladder and which are caused by my muscles. I'm also trying to figure out which foods are triggers.
I should add that I also have IBD and several diagnosed tummy disorders, which I mostly have under control. I also have Hashimoto's thyroiditis, although my thyroid levels are even right now. I realize that having one autoimmune disorder makes you prone to having others, and I'm aware of the IBD connection as well.
Anyway, sorry for the ultra long post, and thanks for reading! I'm so glad to have found this group!