Re: my story - venting...
From: Allie (anonymous@obgyn.net)
Sun Jan 18 21:35:59 2004
Janelle,
You’ve found the right place. It’s not you. It’s not in your head.
It’s not ok. And no one here expects you to pretend it is.
I know I need to hear that sometimes.
There is no solution that works for everyone…I think this whole board is
witness to that since we all bring such a variety of experience, tips
and hopes together. I’m only a little behind you, at 20 just starting
Synarel (three days, two hot flashes, so far so good!), so I really hear
you. If you want to go to college, I would encourage you to so part
time, or full time if you think you can handle it. If there is a small
school you can attend, that’s probably best. I go to a college that has
about 3000 people total, and can talk to my professors privately about
my situation and make the necessary arrangements. Last April I missed
every class because I had two laps (one for endo, the other for my
appendix), an allergic reaction to some meds, and a whole lot of pain,
but I made it through because the professors knew me and were willing to
work with me.
Friendships at our age—and perhaps all ages—do seem to get difficult
when you don’t feel up to having late nights, or going out, period. None
of my friends understand all that well, but they’ve come to accept that
after six in the afternoon I’m ready to fall over and not doing anything
but lie down. I guess it takes time, but you’re definitely not alone in
not having friends who understand.
Do you have a good doctor for your endo? Or a couple good doctors? It
might help to have a counselor to vent to, not because you’re crazy or
anything, but sometimes it helps me to sort things out when I feel like
I’m losing my mind, even if I only see her once every few months.
I know the bleeding gets old. I know far too well. If you ever want to
talk, please feel free to email me. I know I’m tired of trying to get
through this by myself!
--
Allie
At Sun, 18 Jan 2004, Janelle wrote:
>
>Hello to all,
>
>I have had endometriosis since age 13 or 14. I am now 20. I went
>through the typically fight of trying to convince my family and doctor
>that something was wrong, and that it was not just "cramps". I was
>finally heard, once I passed out from the pain while walking to the
>morning bus stop. I have undergone many bc's, laporoscopy's, and
>synarel. I have blacked out more times than I can count. I have lived
>on narcodic pain meds. I have cried so many nights to sleep. I'm
>depressed and cry everyday now.
>
>Finishing school was hell. My principal and teachers were intolerant. I
>finished high school through independent study. I am afraid to continue
>my education into college, for fear of being treated so poorly again for
>missing class.
>
>Work is very difficult. Since endometriosis does not manifest intself
>physically, in a form in which they can see, it is ignored and
>underappreciated. People can not see the havoc which is occuring within
>me. I feel as if I am punished for being able to hide the pain. If I
>screamed and cried, perhaps they would acknowledge the problem.
>
>My family and friends, to varying extents, treat me as if it is in my
>head; or as if it is something I should be able to exercise more control
>over. They act as if it is not a serious problem - that I am
>exaggerating the pain - that I just need to accept it and move on... It
>is so hard to be treated like that by the people closest to you.
>
>I bleed so much that I am very anemic. I take iron supplements and eat
>an iron-rich diet. However, I am still constantly fatigued and suffer
>from Restless Legs Syndrome, as a result.
>
>Endo has affected my self-image. I feel damaged. I feel ugly. I tend
>to dislike myself.
>
>B/c endo affects people in differrent ways and to varying degrees, I
>have to deal with - "My cousin ___(whoever)____ has endometriosis. She
>had a lot of pain, but she took some medicine and is okay. She deals
>with it (and doesn't miss work, school, plans...)" "I read about
>endometriosis. If you do _____________ you will be okay."
>
>Also... "You seemed to deal with it better before. It didn't use to
>keep you from going out. I think it is kind of in your head, and you
>just let it get to you more now." This lovely one came from my best
>friend who does not understand that it is worse than it was before. I
>handled it better before b/c it wasn't so bad. And she doesn't
>understand how much it hurts to be told that she thinks it is in my
>head.
>
>I think that being so young makes it difficult in a unique fashion. I
>am only 20. I am supposed to be social and energetic.
>
>Sorry to be so negative. But I am so angry - frustrated - tired - sad -
>confused - pained - hopeless - alone..........
>
>Thank you to anyone who bothers to read all of this and respond.
>
>Best of luck to all, and take care,
>
>--
>Janelle
>
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