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Published: 2007-08-20 18:09:38 +0000 UTC; Views: 4028; Favourites: 46; Downloads: 4
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This was intended for www.postsecret.com but a recent post in the Endometriosis Research Center's yahoo group made me cry today because it struck so close to home..The question was "What should people know, what do people (wrongly) think?" and one of the responses was made by a mother about her daughter. Someone had said to her daughter, "Well I know people with cancer that make it to school everyday!" which was crushing.
As if dealing with a disease that has no cure and who's treatment options are dangerous and damaging wasn't enough, the lack of understanding is that much worse. I consider myself to be blessed that so many try to understand, but I see them struggle with it everyday like I'm supposed to magically get better. I watch as they can't help but become frustrated with me when I say that I am not okay but appear fine.
My dad has been fighting cancer for about five years now. When I tell anyone about my dad the response is always something to the effect of, "Oh I'm so sorry, I'll pray for him!" or something of similar ilk. While they may not understand fully what it means to have cancer or watch someone you love deal with it, it is common knowledge that it is a horrible thing to have to go through and scary to boot.
Endometriosis is scary too.
There is something growing inside of my body that's not supposed to be there, and I can't do anything about it. It hurts me physically and my relationships with those around me. Too little is known about this disease that was discovered over 300 years ago. Doctors still can't even agree on safe treatment options, instead they proscribe harmful treatments that give little to no return on the investment of risks taken.
When I told my mom that my doctor thought I might have endometriosis she responded with, "It could be worse. At least you don't have cancer." I don't think she knows how much those two sentences have hurt me, in fact, I know she doesn't.
Here are the top five things I want others to know about endometriosis..
5) I cry every time the pain is so bad that it keeps me from being a productive member of society. It is the pain that makes it hard for me to visit with friends and family or work, not because I don't want to.
4) Endometriosis is a disease, it's not just bad cramps. Many other medical conditions also come as a "gift" when you have endometriosis. No, there is no known cure. Having a baby will not solve my problems and you're an ass for saying so. Lupron is not a miracle shot, it is a temporary solution with very serious long term side effects. Do NOT perform a laperscopic surgery just to get it under your belt and stick it on your resume, if you can't help, help me find someone who can.
3) My emotions are out of control, and it's not just from the Lurpon. I am uncomfortable in my own skin and ashamed of what this disease has done to my body. That too makes me cry every day, because I don't know how to deal with this and neither does anyone else.
2) Don't tell me you know how I feel, that you've had something similar. You don't, and you didn't. Endometriosis has a very distinct feeling and if you do not have it, you cannot imagine what it is like to feel so clearly know where and when the disease is spreading inside of you while you and the doctors both are helpless to stop it.
1) Learn about endometriosis with me, help me not be scared. This is the most important thing you can do for me.
_________________________________________________
I would like to thank DrGreene.com for featuring my story.
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Comments: 88
*hugs*
Too young? That's a new one... but then again, I've heard so many crazy things come out of doctor's mouths during my time of treatment that I just about stopped listening all together.
Fight to find good doctors. Even with stingy insurance, you can do it. I did. It took a lot of time, and a lot of effort... but it's so worth it!
I'm over one year post hysterectomy and I feel WONDERFUL!
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i dont want a histerectomy thogh.. i wants kids first... lol
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Happily, I always wanted to adopt. I am sad that I'll never be able to feel what it is like to have life growing inside of me though. I wish you the best of luck!
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i just saw this and i had to read it and look to see what you said because right now i'm going though a really rough time because my doctors are thinking i might have endometriosis which scares the hell out of me. and after reading what you said i feel a little bit better because i know it's ok to be afraid. i hope you're doing well and i'm sorry you have to deal with the pain and everything
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I'm sorry to hear that your doctors think you might have endo, but hey! It's better than then -not- knowing what you have and thus have no real means of providing a solution, right?
Actually, I have better news than that! I had a complete hysterectomy done roboticly (really cool in so many ways and a big bonus for endo, if you want more info) at the end of February. Aside from hot flashes from hell, I'm feeling WORLDS better! I've no doubt that I need to continue with the plan I'd presented to my doctor after having it suggested by a dear friend, in which the rest of my endo shall be killed off hopefully. If you want details, I'm MORE than happy to share but I'll wait until you ask for them because recently I had a woman in a similar situation to us become very upset with me for offering her advice based on my experience.
Please let me know, I have SO many great resources to share with you as I drown myself in research since none of my doctors knew what to do about treating my endometriosis and I refused to exist miserably in my bed on horrible drugs the rest of my life!
My best wished and my strongest prayers for you, my sister.
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thank you and ya i'm still waiting to see a doctor because it's hard to get into any place i live in and i agree it will be better to have an answer and it be endo rather than no answer for the pain. and that's cool i'm very happy that you're doing better and ya i would like to know and i appreciate it. and thank you very much i apreciate yoru wish and prayers
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PM me an email address and I'll send you links.
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my email is viva_la_bam_skate@yahoo.com.... thanks
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This was very powerful to me. I cried reading your comments. I have just begun my battle with this disease. Just learned today. You are so right, nobody understands it, if they do not have it. My mother said almost the same words to me when I told her. I was hoping she would come over to my home and comfort me like a mother should. Instead she stayed home because gas prices are too high and "Hey, it's not like life threatening or anything!" I know everybody experiences pain differently, but I understand what you are saying. Thank you for creating this.
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As I've offered to others... I've done quite a lot of research on endo & had a couple great resources in providing me some out-side-the-box ideas by way of treatment. I had a total hysterectomy back in March and while I'm not endo-free or pain-free the difference is DRASTIC! I'm actually a functioning human being again! It's wondeful! Please let me know if you care to talk and share.
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Wow. Thank you. I wondered if that would be the best way to go. However, I am only 22 and have only had one child. I would like to try to have another before considering something like that. It is nice to know how much it improves the quality of life though. Gives me hope.
Samantha
mgc
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It's also important to remember what works for one person might not work for another. That said, I do think how my surgery was done is the best way to go. I am 23 years old with no children, but I knew it's what I wanted... I knew it was what I needed. I had to get my life back. For me, it was the right choice. You'll know what's right for you & when you're ready.
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A great piece of art; and scary. Especially when so many women actually have this disease and so few know about it.
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It is very scary! Thanks for your responce.
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...that... I'm not sure I can find words for it. It's... it's... just...
YOU NAILED IT! *half-happy, half-exasperated at people who doesn't give a damn*
Okay, I don't have it diagnosed, but something is wrong with me and several others around me. Cramps, fevers, panic, the loneliness... I won't say that I know how it feels for you since I haven't got a proper diagnose from a doctor, just a bunch of 'maybe you have it' and then nothing more... but I CAN say that I at least have... well, some kind of weak grip around the concept. And it's impossible to put it in words, really. But your pic somehow did the job. It says it all.
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Endometriosis cannot be diagnosed unfortunately unless you're willing to go under the knife and have then biopsy a sample. There is no blood test or anything else that can to do to confirm. If you'd like to talk though, I'd be MORE than happy to answer any questions you have that I can answer... and if I cannot, I surely know who you point you to. There are many support groups who can do wonderful things that help you keep going.
Happily, my hysterectomy (total hysterectomy) back in March solved a GREAT deal of my pain and I'm almost a completely functional human being again! It's wonderful! There is hope for the hopeless! (I know it feels hopeless, but it's not, I promise.) Again, I'd be happy to talk to you about your symptoms and see if I can be of any help to you. Just because I'm free of this disease's iron grip that it had on my life for so long, doesn't mean I'm going to abandon all of the other women still suffering. I very much want to help all that I can understand this aweful disease and help fight it!
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Yeah, I hate that men just roll their eyes at endometriosis too. They don't understand how frightening that amount of pain is. I am always incapacitated for about a week. Cold sweats, fevers... I can't even walk because the pain will make me faint.
And we have to do it every single month. And even when we are not on, we have the pain from the scar tissue. There should be more help. I am thinking about doing a documentary about it for my own comfort.
This is a beautiful picture...
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There is hope & there is help. I promise! Let me know if you care to swap stories and ideas.
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I once had unbearable pain/cramps, that I couldn't walk and just collapsed there crying for hours.
Randomly.
I thought I was going to die.
It only happened once, and I can't imagine the pain of going through that all the time.
My heart goes out to everyone suffering from this terrible disease.
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I have Endo also. I've had it since I was 11 years old, since I've started puberty. :/ I've had constant cycts over and over which burst over and over. Been on so many types and brands of birth control its disgusting and only two surgeries to help "control" it. I've gone through so many horrible break ups because of my mood swings and missed so much of high school its a miracle I graduated.
I want to have kids so bad in the future but it just seems more and more unlikely.
I did find out some pretty helpful information to help slow it down but nothing else you can really do. Eat lots of white fish like tuna and mango, pineapple type juices. No clue how it helps. I'm also on Merina(sp). Its helped so much but now I have risk of becoming infertile because of it since I've never had kids before it. :/
I do understand how you feel, growing up with that much pain is so unfair but it just makes you stronger as a person. You grow from it but it doesn't make it any better, I know. Thank you for making this, its so touching and promotes the emotion so well.
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*hugs*
Luckily I have always wanted to adopt at least one child, so the idea of adopting all my children wasn't too long a stretch for me to reach. I had a total hysterectomy back in March of this year and it's done miracles for my pain levels. Unfortunately this method isn't for everyone, such as yourself. There are however other methods that would not hurt your chances at child birth at all that I would like to recommend, as well as some diet changes that I learned help greatly along with some herbs actually proven to help.. not just "oh, well, she said it worked" kinds of stuff.
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Thank you for putting that out there. I have endo and seeing this made me feel a little better to know that I am not the only one thinking the same thing.
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*hug*
Let me know if you'd like some informaton about online support groups! You're not the only one by a long stretch!
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My sister has endo. She ended up self diagnosing herself when her doctors couldn't figure out the cause of her pain after about 3 years. It's a crazy painful disease.
This is from her blog from 2004
hi compy
i'm just sitting here
and wishing i wasn't
i ate three donuts today
but i probably shouldn't've
my head hurts and
there is nothing to do
i want to go somewhere else
but i can't
i want to go get all my homework
done
but i can't
i want to hang out with my friends
and enjoy my semblance of a life
but i can't do that either
i want to be somewhere
anywhere
but here
i want to worry about
what to wear
what to do
where to go
i want life to be simple again
even though it will seem
so complicated
i want to be able to give hugs
when my friends need them
i want to write cards
and make phone calls
i want to be reliable
i want to give everything i have
and get nothing
i want to be like i used to be
i want to be the last one there
still cleaning up
i want to serve
and i want to give
but i can't
i can't even leave my house
these days
but you know what, compy
nobody cares what i want
nobody gives a crap
as to whether i am happy or sad
nobody cares how i feel
they are just mad at me
cause i don't do what i used to do
and they tell me i need to serve more
and be less selfish
i hate being sick
all the time
i'm sorry, compy
nothing personal
but i don't want to be here
but since i have nowhere else to be
let's be friends
my heart goes out to you
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Your sister's journal makes me cry....
Just as so many feel I've said everything exactly right in expressing the feelings of having endo, so has your sister. I am so happy to have my health back, don't get me wrong, but all of the things this disease have cost me.. It's almost too much to bare, except that I am still here trying to bare it. There was almost no victory in recovering from my hysterectomy as I looked around at my life and saw that nearly everything that mattered to me had been lost while I was sick, because I was sick. I was always that person who was an hour early for everything, I was always the last person to leave. I was always the first person to volunteer and the last person to "give up". Now, I'm trying to find that person again.. I hope she's still in here somewhere, but I'm terrified she isn't and that I'll have to do my best to reinvent myself afraid I'll never be as good as I once was. There's pieces of me missing, pieces stolen by this disease. I've defeated most of the pain, but there's no doubt that endo has left a permanent mark on me.
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This is such a powerful piece. I'll admit I have never heard of endometriosis until now. Having known 2 people who have had cancer the idea that it would be better shocked me, but that's the point of the piece isn't it. We all know that cancer is shocking and horrible to deal with but know far too little about other things which leave people to suffer in silence. This truly is a really powerful message and brilliantly expressed.
Deirdre
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Thank you very much, it makes me happy to know that this piece has reached people in the way that it was intended to.
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ok, now i know what you're going through.
well, actually, like you say i know what you have, but have no idea of what you're going through.
as with every disease ignorance is often a big problem, people don't know what you're talking about and can't even imagine how hard it can get.
a lot of people here where i live can't even say the word "cancer", they're too scared...
well, i guess there's nothing really useful i can say to make you feel better, beside the fact that thanks to you *I* now know what endometriosis is.
it's not much.
M
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When I was diagnosed, -I- didn't know what it was. That's scary when 20% of women have it.
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yes, the scariest thing is that is a problem so diffuse and yet it's almost unknown.
some things (like menstrual period) are still too much taboo to be openly discussed.
most of the woman i know (even young, modern girls too) are usually ashamed to speak about the menstrual cycle, it's socially unacceptable even to call it with the real name. this leads to ignorance, even on the "healthy" aspects of it like reproduction.
well...
best wishes
M
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This is a sad, sad truth...
I'm a pretty open person, because I am not ashamed of myself... especially not for a disease I did nothing to bring on myself. Still, people are always shocked at how forthcoming I am about any questions they have about the disease. I want very much for people to learn & awareness to be created, so of course I am more than happy to speak with anyone about it.
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just commented on your other submission and now I see this. Not sure why you put this in scraps though. This is brilliant and needs more light on it.
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I thought about putting it in my main, but I couldn't think of what to label it as subject wise.
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