kuni_bob
04-25-2008, 09:54 AM
Hi Everyone,
Usually, my symptoms are manageable with Elmiron, Reactine, diet & stress management -- I wouldn't say "remission" because I still get flares, but maybe a couple a month instead of every day. I can usually soothe the flare by monitoring water intake, taking a pyridium and taking pain meds. I am very sensitive to diet and hormones. I have a Mirena IUD to try to stop my periods, and have noticed that it helps with my day-to-day frequency.
Well, I've been in what seems to be an ever-growing flare since my laparoscopic surgery in March, which was to remove a 12cm cyst from my ovary and potentially diagnose endometriosis. (Still don't know the status on that; my follow-up appointment is next week. If it is endo, it's very mild.) I had to go off Elmiron for a week before the surgery, and flared on day 2 but was completely fine the other 7 days.
When I woke up after the surgery, I was so doped up that I didn't feel any pain from the surgery, but my bladder was on fire! They ended up giving me such a high dose of opiates that they had to monitor me to make sure I kept breathing, and I still felt pain, but they couldn't give me a higher dose. It was ridiculous. I haven't felt pain that bad since my pre-diagnosis days 6 years ago! Then I ended up with an allergic reaction to something and then had to take a bunch of Benadryl.
When I went to the bathroom for the first time, thinking that might help my bladder, my bladder was full of air! O_O I guess this is from the air they pumped into my body during the surgery -- it chose to go out through my bladder instead of my gut. :confused: There was instant relief, as if it had been inflating my bladder.
Anyways, since then, my bladder just hasn't been right. I had to do a colonoscopy last week, and the prep & stress for that seemed to irritate my bladder further.
Now my hormones are all out of whack (presumably from the ovary surgery & other stresses to the body) -- my period was 10 days early and I had the craziest mood swings from it. This has sent me into a flare that seems to get worse each day.
None of my usual treatments will work. :cussing: I've tried combinations of pyridium (which helps but aggravates my digestive issues, which are also flaring), codeine, ibuprofen (which usually helps things but just made things worse), playing with the dose of my antihistamines, meditating, muscle relaxation, drinking more water, drinking less water, xylocaine for my urethral pain, etc. My diet is incredibly bland & IC-friendly already, but I've been even more conservative than usual just in case. Tried drinking baking soda, but that didn't work. UTI tests were negative.
I'm getting a bit desperate here, so if anyone can recommend things for me to try, I'll be very grateful. If this flare doesn't go away within another week or two, I'm going to go back to my uro for rescue instills, but I don't want to do that unless I have to.
Also, I think I just needed to rant to people who understand! :grouphug:
Sorry this was so long!
Usually, my symptoms are manageable with Elmiron, Reactine, diet & stress management -- I wouldn't say "remission" because I still get flares, but maybe a couple a month instead of every day. I can usually soothe the flare by monitoring water intake, taking a pyridium and taking pain meds. I am very sensitive to diet and hormones. I have a Mirena IUD to try to stop my periods, and have noticed that it helps with my day-to-day frequency.
Well, I've been in what seems to be an ever-growing flare since my laparoscopic surgery in March, which was to remove a 12cm cyst from my ovary and potentially diagnose endometriosis. (Still don't know the status on that; my follow-up appointment is next week. If it is endo, it's very mild.) I had to go off Elmiron for a week before the surgery, and flared on day 2 but was completely fine the other 7 days.
When I woke up after the surgery, I was so doped up that I didn't feel any pain from the surgery, but my bladder was on fire! They ended up giving me such a high dose of opiates that they had to monitor me to make sure I kept breathing, and I still felt pain, but they couldn't give me a higher dose. It was ridiculous. I haven't felt pain that bad since my pre-diagnosis days 6 years ago! Then I ended up with an allergic reaction to something and then had to take a bunch of Benadryl.
When I went to the bathroom for the first time, thinking that might help my bladder, my bladder was full of air! O_O I guess this is from the air they pumped into my body during the surgery -- it chose to go out through my bladder instead of my gut. :confused: There was instant relief, as if it had been inflating my bladder.
Anyways, since then, my bladder just hasn't been right. I had to do a colonoscopy last week, and the prep & stress for that seemed to irritate my bladder further.
Now my hormones are all out of whack (presumably from the ovary surgery & other stresses to the body) -- my period was 10 days early and I had the craziest mood swings from it. This has sent me into a flare that seems to get worse each day.
None of my usual treatments will work. :cussing: I've tried combinations of pyridium (which helps but aggravates my digestive issues, which are also flaring), codeine, ibuprofen (which usually helps things but just made things worse), playing with the dose of my antihistamines, meditating, muscle relaxation, drinking more water, drinking less water, xylocaine for my urethral pain, etc. My diet is incredibly bland & IC-friendly already, but I've been even more conservative than usual just in case. Tried drinking baking soda, but that didn't work. UTI tests were negative.
I'm getting a bit desperate here, so if anyone can recommend things for me to try, I'll be very grateful. If this flare doesn't go away within another week or two, I'm going to go back to my uro for rescue instills, but I don't want to do that unless I have to.
Also, I think I just needed to rant to people who understand! :grouphug:
Sorry this was so long!