Have any of you ever heard of Interstitial Cystitis, aka IC? I went to the Urologist yesterday and had a procedure done that showed I have this particular disease. (lovely word for it but that's what the Doctor called it) I have pelvic pain, urinary problems all the time. If anyone has heard of this, has this, could offer any insight I'd appreciate it. I did do an internet search but haven't actually talked to anyone who has this or even heard of it.
yeah, but I can't get a diagnosis, even after they scoped my bladder during my first lap surgery and took pictures of the bloody mess inside there. It's rather common in women with endo, for whatever reason. As long as I don't have adhesions on the outside of my bladder, and as long as I drink lots of water, I generally don't have serious problems from the IC. Having the endo surgically removed actually made all the bladder pain go away, at least for me. But then, it might just be a relative thing, the other pain is worse, so the bladder pain doesn't bother me so much, I dunno. The worst of it for me is having to pee about every three hours, all day and night. When I eat certain foods to which I am intolerant, things get lots worse, too. I have a friend who's on some sort of Yahoo Group email list for people with IC, you might want to check it out, at least they'd know where to point you to find more information.
Thank you for your response. I haven't been diagnosed with endo. I'm having outpatient surgery January 4th. I had the scope thing done and water put into the bladder thru a catheder yesterday but the doctor couldn't see what he needed because I couldn't hold the water. They have to put me out in order to do the tests they need. I am trying to change my diet and drinking habits. I've been drinking lots of water. I'm cutting back on caffine. I never did drink much but I could still cut some of it out. Your situation sounds painful. Did the doctors give you any kind of medicine to take for it? Mine gave me Vesicare, it's like Detrol. Supposed to help relax the bladder muscles.
It is really a pain to have to go pee so much I kind of leak a lot too. I wear pads all the time. IT's actually getting better than it used to be. A have an occasional flair up but in general I don't have the pain & icky feeling tht I had in the beginning. I went through hell until they figured out hat it was. They told me that it's diagnosed by elimination (no pun) so I had gobs of tests & was on one of those drugs advertised on TV for bladder issues. It spiked my blood preasure so much that I had to quit it. I didn't have an operation but the Uologist put a fluid in through a catheter a coule of times. I think that was something like 3 years ago now. It really did help a lot. I quit coffee at first but have gone back to a couple of cups a day. I used to be a pot a day addict.
It's good to hear that there is something that can help with it. Sorry to hear you had to go thru all that to find relief. In the morning I have a cup of coffee. Then mid morning a cup of green tea. I switch to water. Later in the day another cup of coffee. Back to water. Then I might sip a beer in the evening. The past couple of days I've had my morning cup but drink almost 4 16 oz bottles of water a day. (I pee a lot) Aside from drinks food also plays a roll. I have to give up chocolate or at least cut back. I need more fiber in my diet. "THAT" situation is another one I need help with. I've read that irritable bowel and irritable bladder work hand and hand sometimes. The can both cause flare ups. Gheesh.
the more water I drink, the less my bladder hurts. I don't really have to pee any more often, it's like I just go more when I do. For years and years, I was regularly given antibiotics for bladder "infections" when no infection was present, just the pain. And yeah, I also have IBS-like symptoms, also related to having endometriosis. If you have a lap already scheduled, make absolutely sure that if your doc finds any endo, that s/he can and will remove all of it, no matter where it is located. Most docs cannot, and the surgery can cause adhesions which will make everything that much worse instead of better. Don't let them tell you it can't be done, there are doctors who can and do surgically remove all traces of endo, even from places like the ureters and behind the uterus. Don't agree to it if all they use is laser, that won't get all the endo out either, but it's easier for a less-skilled doctor to do.
I just talked to the doctor's office and I asked if the doctor will be able to see if I do have endo. She said with this procedure not normally. I'll ask the doctor when I see him. After having my boys (c-section) I've always had pain/discomfort in my abdominal area. If I lay flat and try to get up I about want to scream it hurts so bad. If I sit a certain way I'll get sharp pains. Does any of that sound like endo? I was researching it but you know how that goes....one or two of the symptoms sounds like what it is and I have the ability to let my hypercondriact (sp) take over. I don't want to get anxious about it.
I know a lot of womyn who have had this treated with a chemical called DMSO. It is a "sewimg machine oil" but it may have some beneficial effects. I know womyn who have had bladder filled with DMSO in a regular hospital, to treat IC. Although this drug is often considered a "quack" drug for arthritis, it does seem to work for some IC. Hope you feel better.
Thank you. I'll have to read further into that. I'm not sure about trying that myself. I have sewing machine oil but the thought of doing that without a doctor to immediately assist me I'm scared.
it sounds more like adhesions (internal scar tissue) than endo, to me. Same laparoscopic surgery is the only way to have it removed, and if the doc isn't skilled enough, the surgery itself will cause more adhesions to form. I've found that yoga really helps with the pain from adhesions, but makes it worse at first as they start to stretch and break loose.
My Urologist uses DMSO when things get really bad. Like I said it has been probably 6 years since I had any serious problems. I get an ocassional flair up but not anything like I had before. Local Medication Dimethyl Sulfoxide (DMSO, Rimso-50®) may be instilled (intravesical) through the urethra and directly into the bladder via a catheter. It is the only FDA-approved instillation treatment for IC. It enters the bladder wall and reduces inflammation, pain, and painful muscle contractions; it may be mixed with heparin, steroids, or other local anesthetics. It may leave a garlicky taste and smell on the skin and in the breath for up to 72 hours. Heparin is similar to GAG and may help to repair problems caused by GAG deficiency in the bladder. Blood, liver, and kidney tests are required every 6 months during DMSO therapy. from http://www.urologychannel.com/interstitialcystitis/treatment-medical.shtml
