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Post by jessabug on Sept 27, 2011 21:33:16 GMT -5
I got tested, and I don't have a UTI
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Post by omaklackey on Sept 27, 2011 23:21:31 GMT -5
I wish you could get the hydrodistention/cystoscopy. I'm sure the bladder endo has just angered your bladder. You should ask Dr. Redwine about it!
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Post by omaklackey on Sept 28, 2011 0:15:35 GMT -5
I have cramps,without a uterus? Wild right? Its my bladder! it feels just like the old menstrual cramps I used to get. I'm out of supplies for my bladder instillation's until either my local clinic gets back to me or my Insurance stops messing around. It sucks! But it does explain a lot of the issues that we endo women have with Pelvic pain. The endo on the bladder causes IC and then bam we have pelvic pain. Isn't that terrific...
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Post by 1234 on Sept 28, 2011 13:37:46 GMT -5
Glad you got tested, Jess. Thanks! It's always good to have something to rule out.
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Post by omaklackey on Sept 29, 2011 14:52:55 GMT -5
Its been since Sunday afternoon that I have been able to do a bladder instillation. I am so fried with calling insurance and 1800 numbers and talking to my doc and rite aide and we went to the hospital and, and, and. Its an unbelieveably long process. I need my meds. The Elmiron that they use for bladder meds was $280. Yeah, I'm not going on that med, needless to say. I will be using the Heparin/sodiumbicarb/lidocaine mixture. My caths were supposed to be here tuesday and they are expected late tonight. My approval/prio authorization has cleared for Rite Aid and I should be able to get my meds tonight. I hope! I'm so frustrated by all this. I also found out I have to pay for my catheters myself. Its not covered at all. Its been a very rough week and I'm so cranky right now!
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Post by JC on Sept 29, 2011 16:17:58 GMT -5
OH GOD that's so complicated! I really hope all this helps you because that's quite a lot to deal with on top of feeling like crap, taking care of a family, and going to school.
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Post by tarabobara17 on Sept 29, 2011 17:25:49 GMT -5
wow, i didn't know so many people had this issue. My dads wife just got diagnosed with this, but they also found cancer, she is doing chemo right now. she had no symptoms other that kidney stones out of no where and a bit of pain when peeing. i have noticed with myself that i have to pee CONSTANTLY, wake up in the middle of the night, and it gets worse right before my periods, which are so out of control. My new gyn said there wasn't anything he could do for my bleeding :/ ( i just had a 16 day peroid, and 1 week later i started another one, and it's been going on past a week now too) and i didnt have to pee at the office ( of course ) but they were going to do a uti test, but i dont feel like i have a uti, when i do it's usually over with after lots of cranberry juice... hmm
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Post by omaklackey on Sept 29, 2011 19:06:12 GMT -5
Watch out for the Cranberry juice. If you have Endo on the bladder it can cause IC! Cranberry juice on a bladder with issues is like pouring acid on an open sore. One of the many things I'm learning.
I finally got my meds, all but the Heparin because it needs prior authorization. I'm hoping it will be ready tomorrow. I have enough supplies that I can do one more bladder instill. I have a few caths until those start coming through Liberator Medical. I have to pay for my own catheters but the IC caths are fairly cheap. It did an instil as soon as I got home, start to finish it only took five minutes. The time it saves going to the bathroom is priceless though! If I added up all the trips to the toilet I waste an obscene amount of time in the bathroom. I've been having a rough time though with my self image/worth. Between the IC/Endo and now an abscessed tooth I'm feel ling like SH*T about myself. I need to get my head into school and I know that will help.
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Post by omaklackey on Sept 30, 2011 22:25:06 GMT -5
So today's cathing went "interesting"? I had about a teaspoon of blood come out with the catheter. It was shocking to say the least. I texted one of my RN friends and asked her if that was normal, ok, just happens sometime, or whatever. She said its okay but gave me some guide lines: if it doesn't stop, if it hurts (always hurts so that one is tricky) or its a general increase of pain, or any signs of clots then I have to go to the ER (since its the weekend). It feels fine and I just sat through an entire movie without a bathroom break!!!! This is huge by the way. I can't remember the last time I did that! ;D I'm having a fun time getting any and all scripts filled, my pharmacy went belly up. BUT the new pharmacist (I'm on first name basis already, which is NOT good but good if you know what I mean). She complimented my help with getting the scripts filled. They had no access to Lidocaine of all things to be out of! I went to the hospital and asked if they had it and they did and called my pharmacist and she says "oh that's wonderful, Yes I can get that from them, thank you!". I'm still waiting for my Hyophen which my old pharmacy warned me to fill a week ahead of time since its a special order/Prior authorization med. BUT the old pharmacy suddenly out of the blue goes belly up, ships all our scripts to RITE aide and didn't bother filling the special order one (the most important oral bladder med, that I take four times a day) So anyways that's my frustrating life with IC.
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Post by omaklackey on Oct 1, 2011 16:05:27 GMT -5
ok, so this is just to freakin awesome... I'm going to be completely out of all three of my bladder meds by tonight. Yup! Its official. This freakin sucks. ARGHHH!!!
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Post by omaklackey on Oct 5, 2011 0:01:55 GMT -5
So my three, oh wait four days of the nightmare are now over. They screwed up my order and I had to wait until today to finally get my amoxicillin for my tooth and my bladder meds. Its been a rough weekend... IC sucks by the way, in case you were wondering. I did a cath on Monday with the very last of my meds and went very bad. It was pretty rough, and I had to use a second catheter. The one brand is horrible and the two times I used it I had problems with bleeding and having a horrible time getting it in. It doesn't bend right or something. I had to call my hubby in to help me. I hate that. I feel like I'm already such a wreak that my sex appeal is going down the crapper but every time I need his help with something like this...
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Post by hannahjex on Oct 5, 2011 3:41:08 GMT -5
Sorry it's going so rough with the cath, Karla. Glad you've got your meds now. I know it must feel really demoralising having to ask your hubby for help with stuff like this; but try to look at the bright side of it. You've got someone who loves you who's stuck with you through all of this and you can still call on to help you with a self cath and that's a blessing. (I know that sounds lame, and it still sucks having to ask, but it's still true).
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Post by omaklackey on Oct 5, 2011 12:35:46 GMT -5
Thanks Hannah! It didn't sound lame at all. I needed some encouragement. last nights went much better and I finally ordered up my catheters. I'm feeling pretty good right now so I'm going to try every other day cathing in the hopes that I'm healing enough to get to one a week. A box of 30 cath's is $55 so the less I can use the better of course. My meds have already started to work again! YEAH
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Post by JC on Oct 5, 2011 13:16:43 GMT -5
Aww I'm sorry you're having a hard time! I think it's totally awesome that your husband helps you though. What a great man you have!
As far as the cathing, have you tried doing it with a mirror in front of you to see better?
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Post by omaklackey on Oct 5, 2011 15:59:29 GMT -5
Of course I have a mirror, I mentioned earlier that my hubby found this absolutely perfect mirror that sits inside the rim of the toilet so I can see. Its just that once you have "found" the hole getting it to continue on its way can be tricky. Some catheters are different then others and work better. I have found the one that works the best. The other brand I tried... OUCH!
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