|:: off on the wrong foot ::||...some kind of awkward journey|
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march is endometriosis awareness month. last year, at this time, i had never even heard of endo. a month later, i started having symptoms of it. of course the diagnosis wasn't confirmed until last october when i had surgery. (laparoscopic surgery is the only way to definitively detect the disease.) usually a simple outpatient procedure, mine became complicated by internal bleeding. my hematocrit dropped to less than half of what it should be. i spent several days in the hospital, had a transfusion, and spent a week in bed trying to build back up to a normal blood count. and what did i get from it? less than 2 months of relief from a nearly constant ache in my side, at the base of my spine, and in my hip radiating down my leg.
so how do i feel about it?
i feel frustrated. there are very few treatments available for this disease. after surgery, i took a drug (Lupron) that was supposed to put my body in virtual menopause for 3 months to inhibit growth of endometrial tissue, causing it to die off. the drug worked for a little under 2 months. then i took birth control pills continuously for 3 months, skipping the placebos. now i am on Lupron again, with another hormone being "added back" so i don't experience the side effects of menopause (hot flashes, etc.). the new hormone can cause headaches, depression, mood swings, etc. - all side effects of birth control pills, but this pill has a higher incidence of all of these things. i am frustrated because there aren't other options, except a more radical surgery.
i feel angry. i have learned in the past year of many women i know that suffer from this disease. both of my aunts have it, and i suspect my grandmother did too (and it runs in families) so why had i never heard of it before i got it? why aren't doctors and researchers doing more? other treatments being developed are similar to Lupron. i read messages from women on endo support message boards, and they don't seem to find much that works either. the only thing that seems to put the disease in remission is pregnancy.
i feel scared. there is a 40% chance of sterility with this disease. and the chance of sterility goes up with each surgery, due to scar tissue build up. i'm almost 26, and i know the longer i wait to have children, the harder it will be. i have a co-worker with endo who is around 35 and has been trying to get pregnant for over a year with no luck, even with fertility drugs. i want to have children some day. i don't want to miss out on it.
i feel guilty. my family and my boyfriend are very supportive. but i know that there are a lot of people in the world who are worse off than i am, with lots of problems that they have to deal with on a day to day basis. i feel the need to put on my "good face" all the time. i can't let my relationships or my work suffer because of this. i don't want to burden anyone.
anyway, all of that is something that i've needed to express for a while. i have never put any of that into words before, and i think it was good for me to do so.
thanks for reading.
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