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Post by amber84 on Oct 1, 2010 11:37:35 GMT -5
I would like to start this thread by making something clear. It is my desire to share my experiences with the CEC. It is by no means my intention to advocate one treatment over another. My hope is that, in sharing my story, this can be used as a tool to help other women make an informed decision regarding there treatment.
And now.....I will start from the beginning! ;D
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Post by Shannon Elizabeth on Oct 1, 2010 11:38:55 GMT -5
Wuuuujuuuu I'll be glad to hear this Amber!
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Post by amber84 on Oct 1, 2010 14:14:24 GMT -5
Monday, Sept 20
It's 3am. My husband is sleeping in bed next to me but as usual I am up, on the laptop. Surfing....searching..reading...surfing...searching...reading. Scheduled to have a Hysto in 3 weeks from today. I'm desperate but I know my decision isn't logical. I just don't want to be in pain anymore. I'm 26 years old and haven't been able to have kids because of Stage 4 Endo with Frozen Pelvis.
And then somehow it all became very clear for me. I decided that I was in the driver seat and it was time I started driving. I registered online with the CEC per the instructions on the website. They offer a free records evaluation. Now I have to wait for them to email me with further information on the process.
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Post by JC on Oct 1, 2010 15:00:20 GMT -5
Cool I'm glad you started this thread. It's neat to see the entire process.
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Post by Karen on Oct 1, 2010 17:28:22 GMT -5
Yeah, thanks for sharing!
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Post by amber84 on Oct 2, 2010 23:24:48 GMT -5
Monday, Sept 20
It's 11am. While I am excitedly explaining to my husband what I have decided I check my email and there it is. An email welcoming me. This was a very eye opening email as it explained more about the CEC's philosophy and the procedures they follow. Now the ball was in my court. I was to procure my records, fill out the provided forms and questionnaires, write a detailed narrative about my symptoms both past and present, copy my insurance card and put it in the mail. Then I would wait 3-5 days for them to review and get back to me.
Now at this point I would like to mention a couple things.. 1) They provided one general information questionnaire, everything else was tailored to endo. They even had a Bowel Survey and Bladder Survey that used a number scale to determine possible bowel/bladder involvement. It was so refreshing to fill out paperwork....FOR ME!!! I didn't have to worry about writing a novel to try to explain myself. 2) I ran into a problem with my doctors office. The Gyn who has been treating me for 5 years wanted to charge me for my records- $1.00 per page for the first 25 pages and $0.25 for every page after that. RIDICULOUS! Well the CEC thought it was just as ridiculous as I did so they let me fax it.
Mon Afternoon I received an email from one of the surgeons. Probably a form email but nice anyways. Offered to answer any questions- so I asked away. Get this- THE SURGEON replied to my email at 8:30 pm!! So far I am very impressed with the level of care.
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Post by amber84 on Oct 2, 2010 23:28:10 GMT -5
Thursday, Sept 23
I faxed everything last night at about 9pm. So much for 3-5 days...Dr Sinervo (the one who emailed me on Mon) called me. I missed his call but the voicemail said that he was confident they could help me without having a hysterectomy. He will try to call me back on Fri. But....Fri came and went and I didn't hear anything. Guess I will have to be patient and wait it out over the weekend.
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Post by amber84 on Oct 4, 2010 20:49:44 GMT -5
Monday, Sept 27
7:30am- Dr Sinervo calls me but I miss it because I am still asleep. I call the office at 8 and they told me "He isn't in the office yet. He must have called you from his cell phone." SERIOUSLY?!?!?! I have been seeing the same GYN for 5 years and I have NEVER gotten her to call me when she is in the office...on her cell phone!??!?! pshhh! So needless to say...I'm liking this guy already. 8:30am- Dr Sinervo calls He said, "After reviewing your records I am confident that we have a 75% chance of saving your organs and restoring fertility." AAAAAHHHHHHHH!!!!! Of course now I am crying! He was wonderful on the phone…he didn’t rush me, asked me if I had questions and then answered them. He said that I should be able to get in within the next 3 weeks but Muriel (she does all the scheduling for the surgeries) would call me later today/tomorrow to get everything scheduled.
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Post by KSA on Oct 6, 2010 15:33:42 GMT -5
Thank you Amber for sharing the process with us I have heard many women rave about CEC
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Post by Karen on Oct 16, 2010 10:16:18 GMT -5
Isn't your surgery soon? Or did you have it already? We need updates, girl!
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Post by amber84 on Oct 18, 2010 0:16:31 GMT -5
Hey ladies!!! Things have been so crazy that I haven't been doing very good transferring my journal onto the thread. And well.....my husband and I are leaving for GA in 8 hours!! Which means I should be sleeping right now but pretty much impossible! My surgery will be on Wed around 10:30. I am not going into this blindly soI feel very confident in my decision. Up to this point my experience with the CEC- Dr Sinervo and the staff- and the hospital where I will be having surgery, have been phenomenal. Very thorough, helpful, friendly etc. I plan to journal the events in order on my trip. It is a 7 hour drive from where I live in Florida. Definitely feeling nervous now. Still so many "what ifs" that won't be cleared up until they get in there. I will keep you posted as I am feeling up to it!! Thanks for all of your continued support.
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Post by Karen on Oct 18, 2010 6:14:12 GMT -5
Good luck with it all!!! We'll be sending good thoughts your way!
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Post by italialynn on Oct 18, 2010 7:41:09 GMT -5
Good luck! Let us know how it goes...
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Post by Tamela on Oct 18, 2010 14:00:13 GMT -5
I can't wait to see how it goes and your experience. I know you are nervous (I would be too!). I hope that it turns out really well for you.
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Post by amber84 on Oct 21, 2010 20:55:46 GMT -5
Well I am sending this brief update although there are a lot of details in the process that I would like to include...just now is not the time. Things did not go as I had hoped. They had to take everything...my uterus, tubes, ovaries and cervix. It was bad. When I went for my appt on Tues I had an exam and Dr. Sinervo told me that the tenderness of my uterus and cervix meant that he would have to do the hyster. He had planned to save the right ovary but it was heavily scarred and covered in cysts. I can't even describe what I am feeling. Emptiness... numb...angry...frustrated. I got some crying out on Tues but since the surgery yesterday...it hurts too much to cry. Anyways...there are a lot of other details that I would like to share but I just can't get into it now.
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