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ReneeH 
1:49am, May 8, 2009
I'm so frustrated. I'm trying to be smart about how I handle my disease. I'm doing my research to educate myself about endometriosis, treatments and doctors, so I can make informed decisions. The last thing I need is people who don't understand the disease or my fears telling me how I should handle this.
In the guise of being supportive, my sister has taken to lecturing me on how I should handle this, that I'm worrying my parents and that I need to quit "putting off" getting treatment. This I cannot deal with. The last thing I need is more stress and it is so upsetting that I do not have their understanding. I know my parents are worried but seriously, do they not realize that I am worried? I shouldn't have to be reassuring them.
When I had my initial surgery, my doctor thought I might have endo but the ultrasound showed what appeared to be large ovarian cyst and a damaged tube. So the plan at that point was she would remove the cyst, possibly the ovary and possibly the tube. When she went in, she found stage iv endometriosis. I remember her telling me in the recovery room, that things did not go as planned, that I had endometriosis and that she couldn't do much at that time. Then she told me I wouldn't remember that conversation. When I went back to my room, my family had already been informed of my diagnosis but they decided not to tell me, even though I was clearly lucid. I could tell something was up but I had no idea what.
Finally later that evening, my roommate told me everything that my doctor had told them. She walked me through the best and worst case scenario because she knows that I deal better with the known than the unknown. My family was furious that she told me. I don't know when they'd planned on tell me because I would have been devastated if I had went back to the doctor later that week and been hit with the news then -- if I had spent days thinking I was fine and then had rug yanked out from under me; it would have been much more difficult to handle.
I know in my heart that I am making the best decisions for me and I'm scared enough without anyone trying to bully me into taking various courses of action.
In the guise of being supportive, my sister has taken to lecturing me on how I should handle this, that I'm worrying my parents and that I need to quit "putting off" getting treatment. This I cannot deal with. The last thing I need is more stress and it is so upsetting that I do not have their understanding. I know my parents are worried but seriously, do they not realize that I am worried? I shouldn't have to be reassuring them.
When I had my initial surgery, my doctor thought I might have endo but the ultrasound showed what appeared to be large ovarian cyst and a damaged tube. So the plan at that point was she would remove the cyst, possibly the ovary and possibly the tube. When she went in, she found stage iv endometriosis. I remember her telling me in the recovery room, that things did not go as planned, that I had endometriosis and that she couldn't do much at that time. Then she told me I wouldn't remember that conversation. When I went back to my room, my family had already been informed of my diagnosis but they decided not to tell me, even though I was clearly lucid. I could tell something was up but I had no idea what.
Finally later that evening, my roommate told me everything that my doctor had told them. She walked me through the best and worst case scenario because she knows that I deal better with the known than the unknown. My family was furious that she told me. I don't know when they'd planned on tell me because I would have been devastated if I had went back to the doctor later that week and been hit with the news then -- if I had spent days thinking I was fine and then had rug yanked out from under me; it would have been much more difficult to handle.
I know in my heart that I am making the best decisions for me and I'm scared enough without anyone trying to bully me into taking various courses of action.
Comments
I hope I'm not out of place now or before, but this touches an old pain for me. I'm not sure of why they couldn't get it all, but it doesn't sound good by your tone. Somewhere in the time of fighting for our lives my wife got severe endo. with a not so good report. They wanted to do diff. surgical precedures that if it had been me I would of said no. But I told her it was up to her, her life, what if I were wrong?
I also had to fend family members for her, so yea, I hear you to make long story short. But don't feel to baddly towards them, they are scared too, and probably have much love for you!
Its like sometimes when I bump my head, and as I do my raving holding on to my sore head, in the peak of pain my closest loved one can say , whats wrong honey . It makes me plum irritable.
Hope things get better with ya'll, the stress doesn't help!
Sorry if I didn't understand and added to it? But prayer to you anyway!!
scratch