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Post by darkvixen77 on Dec 8, 2010 14:53:51 GMT -5
I was diagnosed with endometriosis nearly a year ago at the age of 16. I remember feeling awful for a very long time, being in a lot of pain, feeling washed out all the time and having severe trouble with my emotions and self harming as a result of it. I had surgery to remove a cyst and this is when they diagnosed me and removed a lot of the endometriosis. I felt fantasic after it, better than i had done in years and years. I had so much vitality and i felt so happy. But now its all starting to come back. I have started on contraceptive pill and for my first period it worked and then it was just as bad as it ever was, with severe pain, heavy bleeding, fever and general lowness. I feel so less alive now, my energy is gone and my emotions are rock bottom again. My friends know that i have it but dont understand what it is or how much it affects me, neither do school. I am trying so hard at the moment to keep it covered up but some days i just cant. I am doing very badly at school at the moment because i keep taking time off, just to catch up with myself I dont know what to do with myself at the moment, they are going to try me on some new medication which will hopefully help but i really just needed to tell SOMEONE about it, everytime i try with my friends they just put it off as regular period pain and up and down emotions. x
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Post by hellsbells on Dec 8, 2010 15:18:40 GMT -5
Big hugs sweetie, we all feel it in one way or another x
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Post by pretty on Dec 8, 2010 15:41:48 GMT -5
sorry you have to deal with this, what you need to do is get a letter from your surgeon or doctor and go and meet with a counselor at school. No sense letting your school think badly of you when it's not really something you can control. I had this experience in college, pain and depression made me miss a lot one year, I had my psychologist and doctor write me a letter explaining how my depression and being sick had caused me to miss class and a final. The professor then had a way to let me retake my exam and make up my missed lectures. If you think about it , many students are constantly complaining of the excuses that keep them out of school. But you have a legitimate and documented illness. Please advocate for yourself and ask your doctors to help you show school that you have a serious and painful illness. this may then allow school to assist you in making up the work which is their job. they assist disabled students and all students with illnesses, why shouldn't they assist you as well? Pretty ( just trying to help)
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Post by Karen on Dec 8, 2010 15:54:24 GMT -5
I completely agree with Pretty. I used to be a teacher and accommodations had to be made for students with medical issues, and endo should be no exception. It's important to get your docs on board to help out, too. Do you have any pics taken from during your surgery that you could bring with as proof that it's not in your head? And if that doesn't help, someone recently posted about the Endo Association getting involed when one school district told a girl she needed to suck it up!
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Post by Heather on Dec 9, 2010 14:26:04 GMT -5
As far as your friends, I don't think they are trying to be hurtful, they just may not understand. You might want to direct them to a few websites explaining the disease, and feel free to show them my blog as well (which is all about endo). Then maybe they'll get a clue as to what you are going through. The blog is gaiaspriestess.wordpress.com/
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Post by chicagogal2 on Dec 9, 2010 20:51:01 GMT -5
Hello! Are you taking the birth control pill continually or do you stop monthly for a bleed? You might want to talk to your obgyn about taking it continual if you don't. I did that for 8 years, only stopped 2x per year for a bleed and that helped me alot keeping things under control.
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Post by grneyes1281 on Dec 12, 2010 17:14:28 GMT -5
big hugs!!! it has been terrible for my schoolwork, too. i hope things get better for you!
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Post by darkvixen77 on Dec 16, 2010 11:45:46 GMT -5
Thanks for the replies and sorry that i am replying late. I have to admit that my school dont officially know. People in the medical room know me as i am often down there but apart from that they dont have official documentation. I asked someone if they thought it was neccessary and they were quite blunt and stated that it was 'not relevant' which i thought was a little unfair. I am not on the pill continuously and i do have a week off but i am considering asking to be on it constantly, it would definately save a lot of problems xxx
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Post by pretty on Dec 16, 2010 17:23:23 GMT -5
It is relevant, you have a serious medical condition that affects your day-to-day life. You need to get your surgeon to advocate for you, or just request your medical records yourself and then request to see a counselor at your school and present it like this: I have been diagnosed with endometriosis which is a painful and incurable disease. I need help becuase I have missed a lot of class and don't want to fail school. What programs and resources are available to me as a student here, with the chronic pain and illness I face?
Then say this: it would be unfortunate if I had to go to the school administration to petition for fair treatment. I would prefer to have a designated counselor or teacher who is aware of my medical condition who can consult with other teachers on my behalf, especially if I miss more school.
Good luck hon...
Then see what they say.... good luck, glad you posted again.
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Post by Karen on Dec 16, 2010 18:52:09 GMT -5
Oooh, good action plan, Pretty!
I know how hard it is to ask for help or for special arrangements. I think I'd break down in tears if it came to that for me. BUT, if it's necessary, I'd do it in a heartbeat if it meant continuing on with the things that were important to me without penalty. You absolutely must be your own advocate - no one else will do it for you - and better to take control of the situation than react to someone else's control.
Good luck!
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Post by sunshine78 on Dec 19, 2010 23:56:46 GMT -5
Definitely, let them know, with official documentation. Hell, I'd even go so far as to include the photos of what they found, during the lap. I regret not going to a few of my professors at the beginning of a few semesters, during which I had a hard time, for one reason, or another. It's just better that they know, so they can help you to get yourself caught up, when you miss school. And I agree with introducing your friends to a few websites that deal with explaining endo; they'd be more inclined to understand when you're not feeling quite yourself.
Things like this can kick your butt, sometimes, but as long as you do what you can do when you can do it, that's all anyone can ask of you. Just don't push yourself too hard, either when you feel sh*tty, or when you feel okay.
I hope your doc helps you find a way to manage your symptoms, so you can get back to being more you. Good luck!
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