Re: my life with endo...
From: anonymous (anonymous@obgyn.net)
Fri Mar 27 22:12:35 2009
hey megan,
Tears were running down my face when i read your message because i know
exactly how you feel. I am 20 and every word you said is exactly
EXACTLY how i feel!!! I have been struggling with endo for 9 months and
the doctors just now figured out that it was endo in the first place. I
had surgery last November because they were sure i had IC and not endo.
I am waiting for another surgery to take place but the in the mean time,
everyday is such a struggle! Somedays I wake up and have minimal pain
and then other days i cant get out of bed. I feel like i am taking
loritabs all the time. I have been married for 6 months and my health
has definitely put a strain on my marriage. My husband is so supportive
but i still feel so alone. Im tired of complaining about it. Im tired
of " How are you feeling today" knowing that the answer is i feel like
shit!!! Im tired of being in pain. Im tired of being tired. I used to
be so happy and full of energy. I had a great sex life and now i feel
like all of that is gone. I know is sounds so dramatic. I am a very
strong person but there is only so much u can take. I hate calling out
of work because if it was my choice i would be at work if i was healthy.
I feel so alone and sad....
Alex
At Wed, 25 Mar 2009, Rosa wrote:
>
>At Wed, 18 Mar 2009, Megan wrote:
>>I felt all those same emotions. They are all natural... You feel like no one REALLY understands. I went from being super skinny to now super chubby. Years and Years of treatments have taken a toll on my body and mind.
>I feel sometimes that its not fair...
>Not fair that we have to know what it feels like to be in menopause in
>our twenties. That we have to be ok with the fact that infertility may
>be an issue. That when we call off from work because of the cramps that
>we may seem weak compared to all the other women that can handle their
>monthly periods and function perfectly.
>I sometimes don't realize how I've changed. Physically and emotionally,
>I still feel like the witty skinny girl is inside and I don't recognized
>the funny chubby girl on the outside
>
>So lets just make a toast to good health!
>
>>Hi everyone,
>>
>>My name is Megan, and I was diagnosed with endo in January. I am
>>currently on Lupron. My doctor cut out all the endo that he could. I
>>have a really great doctor that ha lots of experience and is a wonderful
>>surgeon. I'm a college student at UCF, and I missed the first six weeks
>>of school, because I spent time in the ER, had the lap, and then
>>recovered, and adjusted to this "new life of mine." I don't know how
>>anyone else feels, and I haven't had any real conversations with anyone
>>about their endo, and I don't think that someone who doesn't have it
>>like me could understand. Almost every morning I wake up, I feel like
>>shit. It feels like my stomach is all messed up, obviously it's not my
>>stomach, but that's what it feels like. It's like a dull steady ache
>>and then some sharp pains. After I take lortab, it makes it a little
>>bit more manageable. I am trying to be positive and motivated and
>>smile, but I just feel so beyond discouraged and hopeless sometimes.
>>Obviously, I'm dealing with both adjusting to my new life with endo and
>>the lupron side effects. I know that many people are passionate about
>>how much they hate lupron, but I'm not asking for opinions on that,
>>because I've made a well-informed decision about what treatment to
>>pursue for me. I posted once about me being on lupron on another
>>message board, and a whole bunch of women attacked me about making that
>>decision, blah blah. I just feel like I'm stuck in my own body. I used
>>to be in shape, and I've put on like 20 pounds, I know that's the
>>lupron, but the other side effects aren't too bad. The hot flashes
>>such, and the insomnia sucks, too, but I can handle that. Does anyone
>>else feel discouraged? I'm 20 years old, and I'm going to have this for
>>the rest of my life! It seems like there's no light at the end of the
>>tunnel, because doctors really don't know much at all about endo. They
>>have theories about where it comes from and what to do about it and why
>>it keeps coming back, but no concrete anything. I'm not blaming them, I
>>just wish that there was more endo awareness, like if people put as much
>>money into researching endo as they do cancer, I think we'd be ahead of
>>the game. Endo isn't a death sentence, I'm not being overly dramatic or
>>anything, but it really sucks. I'm sick of people questioning me and
>>not understanding. I'm sick of complaining about it to other people.
>>I'm sick of my parents asking me how I'm feeling, because it's never "O
>>hey mom, I'm feeling great," and I'm sick of hearing myself complain
>>about it. I'm just sooo frustrated, and it gets me so down sometimes.
>>My mom and my dad are both very supportive and they try to understand.
>>My dad is so sweet, he tells me that he wishes he could take the pain
>>for me. I have a few close friends, and one of them really gets it, but
>>the rest of them don't. I have a boyfriend that I've been with for over
>>two years, and he has been by my side every step of the way. These past
>>few months have been really hard, not only physically but emotionally as
>>well, and he's helping me deal with it. I don't think that talking to a
>>counselor or someone like that would help, because I honestly don't
>>think that they will know how I feel, I don't think you know how it
>>feels 'til it's you. And I definitely know that stress makes the pain
>>worse, because I think sometimes I get so worried about how I'm going to
>>feel when I wakeup the next day, and what I'm going to be able to do
>>that day, am I going to be able to get to school and work? That that
>>makes the pain and stress of the endo even worse. Lately I'm just
>>feeling really down about my endo situation, I'm not clinically
>>depressed or anything, just really frustrated, and sometimes sad and
>>angry that this is my life now, and it just seems like it might not get
>>much better...ever, until they find a cure.
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