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laurid8967
07-11-2008, 02:19 PM
OK, everyone, its me again with my "question" of the day...
Does anyone here have difficulty with urinating? I really have a problem with this - feeling like I have to go, but I cant, or the feeling as if I never empty my bladder (always trickle trickle). I especially feel like this when I am in a flareup. As a matter of fact, when I was put on the prednisone, within a couple of days I was going like a normal person. I must get up 5 times a night, at least, to pee. Most of the time - almsot nothing comes out. Its been better, like I said, but yesterday and today (Im feeling a small flare from the sun) its back to that, and I also now have a dull pain in my back where my kidneys are. Its not excruciating, like a kidney infection is, but feels like...swollen, maybe. Does this sound crazy? Is this a common symptom of lupus? Or something else? I had one scare with my kidney (before Dx) when I had acute hepatitis (they blames too much Tylenol, I wonder now). I was in the hospital, and a nephrologist came in and said, "Hi, Laura, so you have lupus, right?" (OMG - Do you know HOW MANY docs have said this to me in the past 5 years?). I said "No, I dont" He said "Yes you do, I just saw your "such and such" (I dont know if he said blood work, urine, ultrasound - dont remember) and it looks like you do have lupus. " He wanted to see me when I was discharged. Well, before I had a chance to do that - a week after I was discharged from the hosp. - I was back in the ER with HORRIFIC pain in my kidneys...it was some of the worst pain I have EVER felt. They treated me like a piece of garbage, and thought I was looking for pain meds. (I was already ON pain meds, I didnt need more) and thus, didnt take me too seriously. However, they did do a CT scan, which showed inflammation, but nothing else. My husband told them he wanted the kidney doctor called and what had happened the week before. They admitted me (I had a temperature that they couldnt explain) and the kidney doc came in the next day. Im assuming the ER docs told him I was drug-seeking, and when he came in my room he said, "You are fine, but I think you should see a psychiatrist" He never ran any tests - nothing - and I was discharged. (One of MANY horrific treatments Ive had in as many years)
Anyway, as I said, when Im in a flare (which sometimes is continuous - especially without prednisone) this is how my bladder acts. The fact that it got better with the steroids says to me there may be a connection. And now, the "pain". Its not PAIN, like I said, but like a dull, constant ache - particularly, when laying down.
Sorry so long, you guys, Im such a chatter box sometimes. Does anyone have any ideas?
Love Lauri

NoodleMom
07-11-2008, 04:29 PM
lauri,
yes I have that same thing going on. I had been thinking maybe it was due to the fibroids that are causing me so many problems. Now Im not to sure. It does seem that it has gotten worse in the past couple of months. It is painful (lots of pressure) for me but I know that thats because of the fibroids. At least Imthinking so.
I go in on the 22nd (? or near there. Its the tuesday after next.) to have a uterine abalation and a hysterscopy to get rid of the polyps and fibroids. I'll see if after that it gets a little better. If not I see a reg. doc.at the end of the month. He is new to me as we just moved and I had to get all new docs.

Sorry to take over your thread with my junk....didnt mean to. I dont have any ideas about the back/kidney pain. I hope you get answers and and to feelin better real soon.

K

laurid8967
07-11-2008, 06:26 PM
Oh no - dont apologize...Thats ALOT to have to go through! My mom and sister both had fibroids bad, and both had hysterecotmies in their thirties. I have only had problems with ovarian cycts - one I needed surgically removed, and twice they burst (ouch). I have one now as a matter of fact, they see it everytime they do an ultrasound. I have not, howver, had a pap smear since Jack was born (I know! SOOO bad!!) and last time I went I had precancerous cervical cells. These are very common though. I need to make an appt soon. Does your "hysteroscopy" require sedation? I hope you dont have a long recovery...you have enough to deal with with this stupid disease. (LOL - Im laughing to myself callin lupus "stupid". I sound like a little kid - "Its just...stupid!!") Oooh, been around the kids a little too long.
I forgot that you had to get all new docs...wow..what a pain in the you know what. Who knows? Maybe theyll be awesome!! I hope you feel better soon...and a short recovery too!!
Warm thoughts coming your way..
Lauri

PamelaJ
07-11-2008, 09:18 PM
Hi Lauri -
First, I am sorry you were treated that way in ER! I have had bladder problems and I don't have any known kidney involvement with my disease. I have had trouble going, like my muscles aren't working, and also trouble were I go constantly - it is like my body is a sponge and someone is wringing me out!! I have had it when I am on Prenisone and when I am not. I have back pain in my kidney area and lower back which comes and goes. Sorry I have no explanations as to why, but I do understand!
Pam

laurid8967
07-12-2008, 07:02 AM
Thats how mine is too....Also the sensation I have to go all the time..pressure. Again, one of TOO many crazy things we have to deal with.
Oh, yeah, I have been treated like a piece of garbage TOO many times to count by docs. I was on alot of pain meds for a while - which is ALWAYS a red flag for docs...but even so. I eventually gave up entirely looking to find out what was wrong with me because of it, and probably set my illness back about 2 years. It was too much emotionally to handle anymore - being looked at like your crazy, or brushed off, etc. I cannot say enough lately how much the system needs a major overhaul.
I am so grateful today to be Dxd...I cannot even put it into words. I try not to be resentlful that I could have been feeling better long before this - and try and stay focused on the fact that I finally DID get a Dx at all!!
Hope your rash is better..
Love Lauri

NoodleMom
07-12-2008, 01:03 PM
yes I will be on general anesthesia. We are having it done before ubbyMan has to start eaching in the fall. I am hoping that the recovery wont be to bad. Doc did say that we(he) are going to have to research about pain meds since I am already on so many/much right now.

K

laurid8967
07-12-2008, 02:57 PM
Which ones do you take, if you dont mind me asking...Is the hysteroscopy like a LAPoroscopy? Ive had that done, and the recovery was really easy. Thats how they removed the cyst in my ovary (it was so large, it covered most of the ovary, and started to grow onto my uterus. But, after the procedure, I was up and about in a few days. I also had a colposcopy, where they removed my gallbladder. Again, not TOO long - a week/week and a half.
With the first one, I was given percocet after the surgery, and I hated them so didnt even take them, and I was fine. The other one, I also got oxycodone (Percocet) and that was fine, too.
I think anything "..oscopy" is much easier all-around than major surgery. Instead of opening you up with a large incision, they use a small incision(s), and "suck" out what they need. (sorry, sounds gross, but thats exactily what they do). I have a one inch incision just below the bellybuttom for the ovary(laperoscopy) and three one inch incisions on my torso for the gallbladder (coleoscopy)(? SP). Recovery time is MUCH better than with a regular incision as well. Hopefully, this is what happens with you.
Take care until then,
Lauri

NoodleMom
07-13-2008, 09:07 AM
arthrotec, lyrica, ultram and cymbalta are the pain meds I am on. yes a hysteroscopy is similar to a laproscopy. I will also be having a uterine ablasion which is a burning off of the uterine lining. There is a little loop attached to this camera so they can see what they are doing. There are fibroids and polyps n the lining.
I just finished my cycle for this month. It was a bear, lots of clots and pain. Funny tho that I have not bled now for two days.
Yeah I am thankful that it is not full blown surgery but just a 'scopy. I have never had any surgery just had a colonoscopy and endoscopy. No incisions. This will be the first. I go in next Tuesday the 22nd at 6:30 am. Ugh. I am so not a morning person. Just gonna have HubbyMan roll me outta bed and into the car...with any luck maybe I'll just sleep right on thru.
Gall bladder huh? Thats what my doc thought I had before all tests came back neg. Then I was scheduled for the upper and lower GI and it was discovered I had GERD and they stretched my esopugus at that time too.. Now this. New things just keep on croppin up with us dont it? Someday Im just gonna get on a plane, a boat a train something and just book it away from it all. Wanna come along?

K