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Post by DeAnna on Mar 14, 2012 16:16:38 GMT -5
Keri, Is there anyway that you can get to one of the experts listed on the site? I went to see Nezhat in cali because he took insurance, unlike Dr Cook or Dr Redwine. The experience was so different from any other surgery I had. Also, early on, I did the Lupron (for a year!) and I did fine with it, but I know thats not the case for so many. Also, my pain returned after a couple of years. It sounds like you have a lot of decisions ahead of you. I am sorry that your employer is not being supportive. I am hoping that things work out for you soon. I know how much times like these can REALLY suck
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Post by 1234 on Mar 16, 2012 11:24:24 GMT -5
Keri, I missed the report out from the doctor with being in NYC. Do you feel good about this doctor? are you ok with the Lupron decision? I understand making the decision, but you're really reactive to so many things, so I hope it is not too bad for you. Did the doctor talk about the various tests that Karen has mentioned? When is your bladder test?
I'm sorry, Keri.
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Post by JC on Mar 16, 2012 12:04:04 GMT -5
I worry about the lupron too. You have so many drug sensitivities and it scares me that they want to give you something so harsh. Whatever you decide of course we'll always be here for you to support you. Love you so much!
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Post by KSA on Mar 20, 2012 23:24:47 GMT -5
Had my cath bladder test today. Any urine test I have ever gotten in all theses reports blood has been found so of course todday same deal. Doc wants a renal & uriologist in on all this endo maybe the least of my worries but hey I am ready to hit it hard whatever is is. Lupron I know is a crazy drug and if I had a whack doc that would keep me on when I was having issues with it I would never do it. Dr. Jones tho said the second I feel I want off we go straight to surgery & see what we are dealing with I honestly am ready for the ovaries to be out & whatever else needs removed obviously this bladder is a real problem & whatever it is I just want it done. Thanks for the advice love ya all for helping out!
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Post by JC on Mar 21, 2012 7:53:37 GMT -5
Aw Keri. I just hope they are right. It scares me.
It's funny cause I always have blood in my urine too. I've had it my whole life and it's some weird benign condition that runs in my family. They tell me that some membrane in my kidney is thin and sometimes it lets through blood cells when it's not supposed to. Not saying that's what you have but it's just kind of funny how you and I have similar problems all the time.
Miss you Keri!!
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Post by Karen on Mar 21, 2012 18:44:43 GMT -5
Keri, I really wish Lupron wasn't your only option as it stays in your system for so long! Promise me you'll demand the one month shot instead of the 3 month shot? Hell, I know they even have shorter doses for women going through IVF, maybe you can consider one of those to start? Or beg them to try a different form of BC or any investigational drugs first? I just worry about you and your side effects! As for the blood in the urine, I have that too. No one could explain why. I'm sorry you're not getting any answers, either! Hope you're hanging in there as much as possible. I wish I could be there for you. Miss you and love you lots!
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Post by loveshoes on Mar 21, 2012 20:41:23 GMT -5
For what it's worth - I also always show trace blood in my urine. I have had urine sent the last few check up's to be checked under a microscope and it always comes back as acceptible - nothing to be concerned about. I also notice when I pee, the last few drips are always super cloudy and then they disapate into the rest of the water. No idea - I have searched the internet for that and apparently that's "normal" as well. Not sure.
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Post by semicolon on Mar 22, 2012 6:05:57 GMT -5
On my last physical I also had blood in my urine, but since I was sure I did not have a UTI I wasn't concerned. Maybe we all have blood in our urine!! I think I have a touch of IC (lots of endo gals do) but I've given up caffeine, cut back on alcohol etc, to try to help.
Keri- I like the idea of the one-month shot (I didn't know that was an option).
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Post by JC on Mar 22, 2012 7:31:41 GMT -5
Funny, here I thought I was weird for having blood in my urine. HAHA! But what's even more weird is my entire family has this problem. Even the men!!
Keri, keep us updated please! This whole lupron thing has me really worried about you.
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Post by omaklackey on Mar 22, 2012 18:14:26 GMT -5
Blood in the urine is the number one sign of Interstitial Cystitis, which can only be diagnosed in many people with a hydrodistention. (just be aware it gets missed in a LOT of people because most urologists only do the cystoscopy) Make sure you ask for the hydrodistention (done under general anesthesia) before you do anything extreme to your bladder.
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Post by hellsbells on Mar 23, 2012 12:11:10 GMT -5
Love you Kezza, stay strong xx
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Post by KSA on Apr 5, 2012 18:59:14 GMT -5
Well thanks for the idea's girls with the bladder. IC is what I thought they checked for when they did the bladder cath test? Im confused now. Unfortunety going under for a test like that is not a option for me. Next time I go under it is going to be a big one taking ovaries and resection on whatever is in there. I wish I could do the test but my body can not handle two procedures I have waited a year trying to recover from all the other procedures.
Lupron shot for a month is what I am asking for...and THANK YOU I did not know that was a option for me. Try it and see my girlfriend tried it and she ended up in a full panic attack with major depression she had full hyster anyways. She said DONT do it. If I try for a month and I will know right away my body reacts to everything. Even Sudeedfed! Its nutts
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Post by Karen on Apr 5, 2012 19:58:20 GMT -5
Aw, well, please keep an eye on the side effects when you're on it!
I miss you, hun, and think of you often!
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Post by KSA on May 14, 2012 13:30:02 GMT -5
I have experiencing major back pain & a lot of bladder issues I would of put money on it I had a kidney stone. GP ordered a ct and says no stone & says I have a lower lumbar sprain. I have neen going weeks like this I have had a lower lumbar sprain before this feels very different. A on and off fever lots of trips to the bathroom in the middle of the night. I have had to use sick time so I am stuck yet again without much time. Lupron shot is what I want to avoid & go for the surgery but I am getting put in a corner again. Forcing myself into work on days I should be resting I feel a little confused. Keeping forcing myself to go in to build up time or take it off? I begged my husband a few months ago to stop working but it will never happen. He is dead set we will loose everything if I am not covered under insurance and my job provides it I work for insurance. He won't look at any other options. I called for my PERS retirement paackage if I were to go on disablitiy & I would never be allowed to work again in a library. The benefits would only cover me & as a working woman and mother I would feel guilty leaving them without coverage.
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Post by Karen on May 14, 2012 18:05:10 GMT -5
Aw, man, Keri, I'm sorry you're back into a corner like this! I hope you're able to keep it together enough to keep working, but not too much that you're wearing yourself out! There's no chance your husband can get health insurance through his employer?
I'm assuming you have, but have you been tested for a kidney infection at all? Based on the fever, I'd think more is going on than just a sprain! I really wish you had a doctor in your corner that you could trust to really help you for stuff like this.
Sending you BIG hugs and lots of support!
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