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Post by KSA on Mar 7, 2012 19:43:40 GMT -5
After a year of research & waiting I finally am on my way to Columbus on Friday for a appointment with Dr. Jones who I have seen before but decided to use my surgeon here to remove my endo he however has not been trained like Dr. Jones he has been trained under Dr. Redwine. Here is his link for any Ohio endo girls. www.moca-obgyns.com/practice-specialists/physicians/bio-35.html It has been a crazy year lots of ups & downs and I am trying to manage. When my doctor started to give me demorol in a vial with a needle I drifted off in a world of pain medicine and tried to forget about the pain. It works for a little but eventually is will stop working and then what? So rather than hide the symptoms of this disease with medication that ruins my body I have choose to try and have a doctor remove it so I can have a normal life. Bowel endo is awful I look like I am pregnant most of the time. Not eating & using Miralax or suppoisortys is a every day occurance. This is what the doctors here say is the only way to treat it. Hmmmm I think not. Wish me luck girls I hope this works if not I am on the road to another TPN line. I can not do that again. I will get my nurishment thru a bag? Come on who can live like that. And why when obviously something is wrong....All I want is the problem fixed. Something has to be done. I am hopeful and will try so hard to keep everyone up to date. I have been absent for too long here and miss everyone. Karen, Karla, Helen, Jenaya, Cherry all the newbies I think of my endo girls everyday and wish happiness & health to all of you....
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Post by Karen on Mar 7, 2012 20:06:45 GMT -5
Keri, I'm always amazed at what you go through. I hope the appointment with Dr. Jones is exactly what you're looking for - you shouldn't have to live like this anymore. You know I love you lots and will do anything to help you, support you, or listen. Please take care, and please keep us posted!
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Post by 1234 on Mar 7, 2012 20:32:24 GMT -5
Keri, I hope this appointment helps you. Good luck, and sending lots of hugs.
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Post by semicolon on Mar 7, 2012 22:16:30 GMT -5
I think this is a brave decision and hope the appointment goes very well. Good luck!
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Post by omaklackey on Mar 7, 2012 23:24:25 GMT -5
I'm glad your getting in for help. Its so hard to talk yourself back to surgery isn't it!? I'm having the same issues with suppositories and Miralax and its horrible, I have called three different doctors trying to explain that I can't stay on Miralax and there solution was to use it every day. Isn't that great! I would love to swap suppository stories with you too, mine were my go to for getting things moving but now they cause the most intense pain and then it pops out after only a few short minutes. I sure hope your surgery really helps.
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Post by painttheseconds on Mar 7, 2012 23:36:55 GMT -5
I hope your appointment goes well Keri. Please keep us posted on how you are doing. You are in my thoughts and prayers.
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Post by hellsbells on Mar 11, 2012 6:50:18 GMT -5
How'd it go Keri??
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Post by JC on Mar 11, 2012 9:29:41 GMT -5
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Post by KSA on Mar 12, 2012 20:22:35 GMT -5
I'm ok it went good for the most part. I learned a lot but still have some questions. Imagine being the doctor reading all the notes from multiple surgeries & trying to clear things up for me I felt kinda bad handing the stack over but I did it. Help me were the words I thought to myself the entire time I was in the office.Over & over in my head for a year I have said all I want is someone to help me. I learned a few new things about my body. Ct scans show two hypodensity areas that have spots I guess is what wee call them. No one knows what they are bc no one bothered to biopsy them. Liver & left kidney. For now tho this doc says we will leave those alone he can't do anything with those I would have to have them check by different docs. The last surgery done was where most info came & I learned that the bladder has the most endo and will need a resection. First tho he has a plan to do a test with a catheter to determine if I have a bladder disorder that goes along with endo that would explain some of my symptoms. He wants to then try Lupron to throw me into menapause shut down the ovararies which he believes is the culprit of endo. If I tolerate meds then I have a year before next surgery if not he goes in takes the ovaries & does a bladder resection & clears as much endo as he can excise. He knows endo he swears he can help but does not say its the fix for me. I go back the 20th for the cath bladder test. Thanks girls...feel free to comment any suggestions are welcome. I am scared out of my mind to go into menapause. Either way tho its gonna happen. The endo is destroying me.
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Post by JC on Mar 12, 2012 21:28:25 GMT -5
Ohhh lupron That REALLY sucks. I'm sorry Keri.
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Post by semicolon on Mar 13, 2012 5:57:25 GMT -5
Is the Lupron just to buy more time? It sounds like another surgery is inevitable, so part of me wants to say the heck with the Lupron unless he has other reasons for it. How do you feel about everything? Do you feel good about this doc? This is a lot to consider, hope you are ok!
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Post by KSA on Mar 13, 2012 9:55:16 GMT -5
It buys me a little time if I tolerate it. If not we go into surgery asap. I'm not ready yet for surgery again. I have work that I would need to build up sick time. If it ends up I need surgery sooner I have a feeling this is my last time off I will be let go. Anyway around it is not good. If I have a year tho I hope to feel a little better not miss as much work and have enough time to take off without getting fired. Its hard to decide would love to just do it all now & not worry about lupron but it doesn't seem to be a option for me right now.
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Post by painttheseconds on Mar 13, 2012 14:07:29 GMT -5
Thinking of you Keri. I just wish there was more we could all do to help you. Like Semi said do you feel comfortable with this Dr. and the options he is offering you? You are going through so much right now I can't even imagine. I hope your body can tolerate the Lupron and you can find some relief before surgery. Take care of yourself and please keep us updated on how you are doing. I'm worried about you.
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Post by hellsbells on Mar 13, 2012 14:11:51 GMT -5
Oh Keri. Good news and bad. I wish you didn't have to suffer so much. Whatever route you decide on I'll be here for you and support you x
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Post by Karen on Mar 13, 2012 17:16:35 GMT -5
Keri, I really worry how you'll do on Lupron. Promise me you'll make them do a bone density scan and a full hormone panel prior to Lupron? The purpose of Lupron is to lower your estrogen levels significantly, and if it lowers it too much, you'll feel absolutely awful. I wish he was able to give you more options, and I wish your employer was much more understanding. That sucks. Are you still seeing the nutritionist? Love you, hun!
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