Lamster
08-17-2006, 09:06 PM
:help:
Hello and thank you for all the information regarding this illogical disease. Sometimes I feel like my brain will explode with so much information. Appears at times it's a crap shoot. 50-50 shot of anything working. Trial and error. Trying to keep my sense of humor. Weary. I have some choices and need some guidance. Here's the reader's digest version.
I'm Laura, 42 and recently diagnosed with IC, extreme GERD, hiatel hernia, fibroids, IBS, pelvic endometriosis, and adenomyosis. I've never been sick! Imagine! Doctors and tests for over a year. Happy to know that I'm not making this all up!
Been on a lot of meds. Now on Elmirion for 7 weeks. Major heartburn. Got the capsule trick! Better now. Sanctura too... switched to Enablex last week. One pill made me violently ill. Diet changes. Prelief. Reading books. Logging foods etc... Up every two hours for the bathroom. Feels as if I'm more sensitive to foods and drinks now that I'm on Elmirion. Bathroom a bit less. Urgency a lot better.
Here is my questions. GYN I need a complete hysterectomy. Won't do it until IC is better in control. I have two huge fibroids and the endo is killer! Want to have it done and keep cervix. Told that will help bladder. Could make it worse. URO wants me to try instills. Not sure about that. Scared. Will it be worse? What to do? I just want my life back. Well, quality of life...
sigh....How does one make decisions on IC with other health care options. Heard, read many sides of the fence. Makes me want to SCREAM! Do I just roll the dice and find out what works for me? Don't want to be in any more pain! Why then would I do something that could cause me more harm than good? There's gotta be a different way to deal with this, no? Enablex 15mg. I took at 9pm and was vomiting at 12mid. until 5am... told that it would work better than Sanctura, and that I'd sleep better! HA Lost two days and 7 pounds! Not a happy camper! Are we all just lab rats? Anyone else feel like this? I'm lost here.... any suggestions? :bonk: :help: :loco:
Good news I found a clinical trial for IC at UCLA and they accepted me. Decided to just go. At least there are more alternative ways to deal with this IC in the land of sunshine! Perhaps? Looking for anything that will work... does that mean I put me at risk in doing so? I think not. Just thoughts late in the am... sleep eludes me.
Thanks for listening.
Keep swimming.
Hello and thank you for all the information regarding this illogical disease. Sometimes I feel like my brain will explode with so much information. Appears at times it's a crap shoot. 50-50 shot of anything working. Trial and error. Trying to keep my sense of humor. Weary. I have some choices and need some guidance. Here's the reader's digest version.
I'm Laura, 42 and recently diagnosed with IC, extreme GERD, hiatel hernia, fibroids, IBS, pelvic endometriosis, and adenomyosis. I've never been sick! Imagine! Doctors and tests for over a year. Happy to know that I'm not making this all up!
Been on a lot of meds. Now on Elmirion for 7 weeks. Major heartburn. Got the capsule trick! Better now. Sanctura too... switched to Enablex last week. One pill made me violently ill. Diet changes. Prelief. Reading books. Logging foods etc... Up every two hours for the bathroom. Feels as if I'm more sensitive to foods and drinks now that I'm on Elmirion. Bathroom a bit less. Urgency a lot better.
Here is my questions. GYN I need a complete hysterectomy. Won't do it until IC is better in control. I have two huge fibroids and the endo is killer! Want to have it done and keep cervix. Told that will help bladder. Could make it worse. URO wants me to try instills. Not sure about that. Scared. Will it be worse? What to do? I just want my life back. Well, quality of life...
sigh....How does one make decisions on IC with other health care options. Heard, read many sides of the fence. Makes me want to SCREAM! Do I just roll the dice and find out what works for me? Don't want to be in any more pain! Why then would I do something that could cause me more harm than good? There's gotta be a different way to deal with this, no? Enablex 15mg. I took at 9pm and was vomiting at 12mid. until 5am... told that it would work better than Sanctura, and that I'd sleep better! HA Lost two days and 7 pounds! Not a happy camper! Are we all just lab rats? Anyone else feel like this? I'm lost here.... any suggestions? :bonk: :help: :loco:
Good news I found a clinical trial for IC at UCLA and they accepted me. Decided to just go. At least there are more alternative ways to deal with this IC in the land of sunshine! Perhaps? Looking for anything that will work... does that mean I put me at risk in doing so? I think not. Just thoughts late in the am... sleep eludes me.
Thanks for listening.
Keep swimming.