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Published: 2007-08-20 18:09:38 +0000 UTC; Views: 4027; 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
I couldn't put it better than you have here. Simply put, it sucks and because it's so 'obscure' people don't want to know about it. The few times I've really explained what it is and what it does to me my friends and family were horrified. Since then I haven't heard a word from most of them about it. They just don't know how to bring it up, or they want to pretend it's cured since I went to PT.
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People look at me funny when I say stuff like that but they just don't get it.
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Is this your image? I love it, it describes endometriosis perfectly. People don't understand and often don't want to talk about it. Thanks for sharing, I do understand what you are going through and wish you the best of luck!
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I understand completely... I also have this disease. The only help I have to offer is that you need not feel alone, that there are people out there who understand.
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Sadly I am one of the un educated people in the world. I have never even heard of this before, which frightens me. I hate not knowing of the dangers in life. I incredibly sorry you have to go through so many levels of pain on a physical and emotional level. People can be so cruel and heartless when they can not grasp something new to them. This has inspired me to do some research just so I can educate myself and not be one of those heartless judgmental idiots you have to deal with.
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I know what its like....as I also suffer 
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My doctor thinks I have endometriosis, and wants me to have a laperscopic surgery to confirm, but I am scared to find out, so I just asked for birth control to stop my periods
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Can i just say something....its best to get it diagnosed. Birth control never helped me, infact nothing has so far....so its best to get diagnosed properly then they can find a way to fully help...
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i have endometriosis i know what you go through it's horrible how people never understand. one of my teachers in school thought i was faking to get out of class until after my surgery. i showed her the pictures and she had no choice but to apologize to me.
I was terrified when my grades starting dropping because i was never in class. When my doctor's diagnosed me I was so upset and waking up in the morning made me think "how long until i'm in the nurse's office from pain?" I know how the pain feels and people need to understand it's just as scary as cancer
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OMG, this hits home so hard!
I won't go into my whole story or I'll be typing forever, but the pain and sickness since I was a teen, 2 high risk pregnancies & 1 miscarriage in between, 3 surgeries (exploratory, endometrial ablation, the scraping or burning or whatever of the outsides of my internal organs in my abdomen to remove the growths, having an already severed tube and ovary removed because of some freakish baseball sized cyst/tumor), all the scars inside and out, and chronic abdominal pain for the rest of my life because of all of it. Some days the "cure" hurts worse than the disease did. It just blows the mind, and that's just one chunk of my iceberg.
I'd love to be able to share this with other people who I have never been able to even come close to describing it to.
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I feel for you because i have the onset of Endometriosis. I have also been battling fibromyalgia since childhood. A lot of my relatives think I'm a sissy and am running away from responsibilities of everyday life. I hate feeling like the black sheep in my family but it can't be helped because i refuse to conform.
I see this was done in 07. How are things now for you, if you don't mind me asking?
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Today is Endometriosis day! My heart goes out to those with this horrible disease xxx
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Im srry and know how u feel people at school will insult me about my diabeaties
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I'm so, so sorry you're going through this. To a degree, I can kinda understand. Recently, I was told by a friend to ask a doctor about endo because my description of all these painful things were similar to what she was facing. I mentioned it to my mom a couple days later. She said, "It runs in the family. I don't know why you're making such a big deal out of it."
A couple weeks later, I finally dragged myself to the Indian hospital that sits about an hour away from us. A couple nights before that, I had typed up everything I could think of about my intercourse experiences and everything that goes on during my menstruation cycles. At the end of the month, I have a pelvic ultrasound and a appointment to see my doctor on two separate days. Why? because they very seriously think I have endo.
While I was at the doctor, my mom took the time to read my symptom sheet, then research a little on endometriosis. When I told her everything I had learned at the doctor's she got a very sad look on her face and apologized, then explained to my papa what it meant - neither are happy about it, but my mom has been thinking on it more than my papa because she's helped me get out of some work when I felt like shit since then (I work for my parents at a butcher shop).
I hope that someday your mother, friends, and other family can understand it. I wish you the best. <3
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I have been dealing with endo for years...but only was able to be diagnosed this past Friday. Doctors ignored me and told me that it was in my head.
I look okay on the outside...but what people don't understand is that I am being torn apart on the inside. Some days I feel like I would be happier if I could die.
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Can you give me a better idea of what the symptoms are? Or are the known details a little too vague? You've done a pretty good job of establishing the emotion aspects of it, but the physical part is just a little vague. You're right, I really don't have a clue how this feels for you, either physically or emotionally, I have no personal experience to equate it to. I do sort of know what it's like to deal with people who are certain they understand what your problem is when they really don't, but I doubt I my experience equals yours in even this aspect, in fact I think I can guarantee it doesn't. It's kind of hard to equal a fatal disease that no one around you thinks is that serious. I'd like to say I can feel your pain, that might make the situation less scary, but you're right, I really can't. You have as much of my empathy as I'm capable of without further knowledge of the situation.
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Love this picture. It sums it all up for those who don't understand when we explain it to them. *hugs* endo sisters!
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This picture is so perfect! It seems that cancer is the only "silent" illness that people feel for. Endo needs to have more awareness. Cancer is deadly, but endometriosis is terminal, there is no remission of endo like there is cancer so women with endo suffer their entire life, cancer patients don't always have to suffer constantly like we do!
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I have been dealing with endo for almost 13 years, as my grandfather so unhelpfully pointed out to me yesterday, before going on the usual go out and get a job and take care of yourself and stop being lazy lecture. I WISH I COULD SHOVE THIS DOWN ALL OF THEIR THROATS!!! I am not lazy...I am SICK! So Sorry it doesn't fit into your nice clean notions of sick and well, or that you don't seem to understand that unlike a cold or flu, this is NOT something that you can just get over, or be magically cured of one day.
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Thank you for posting this, it was amazing to read. I have endo as well. It's been hard for me to find people who understand. My girlfriend of 10 years seems to be the only person who will actually listen to me. She has problems as well--she's had a heart valve replaced, so we're both in dangerous waters, it seems.
We live with her parents, and I am currently desperately trying to get aid from the government. I don't feel like I can work anymore. I feel sick all the time. I'm sure you don't want to hear all of this, but I guess I just feel that it might be nice to have a sympathetic ear, or at least someone who understands.
You're so right when you say that people don't understand this disease: Not just doctors, but the people we love.
I get told to suck it up, to stuff myself with pain meds and get on with my life like everyone else. I didn't ask for this--why do people act like I'm being theatrical . . . or like I want this?
It's so ridiculous.
Sorry for ranting or anything. I think this is a really amazing thing you've done here.
-Jess
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Wow, this brought me to tears. I thank you for educating me on this disease so i don't become one of those people who say things when they don't know what they are talking about and offend others. I'd like to say "i hope you get better" but i know that wouldn't do any good. Brave souls like you and others who suffer from pain and horrid diseases like this will be in my thoughts and prayers.
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love this. i was diagnosed with endo a couple months after my husband left me and a little less than a year after a miscarriage. after my surgery, my pain increased and has become nearly crippling at times. and it's true, no one understands unless they have it. there definitely isn't enough awareness or efforts to find a cure going on. It's terrifying when you get to the point of lupron and surgery. I've been emotionally up and down everyday because it's so scary. i became so angry with my grandfather one day when i was explaining how bad and hopeless i feel about controlling the pain and his only response and option was total hysterectomy. I'm 22, that's the farthest thing from my mind. i hope things get better for you. check out juno research. they are trying to figure out some cure and better diagnosing options for endo.
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I have endo and I used to wish this. I used to wish it was something known so we knew what to do. Me and my mom have been fighting through this, and after some serious diet and lifestyle changes I'm on the road to recovery.
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I don't have a story about how I have Endometriosis. I didn't even know what it was until I clicked on this picture, and then googled it. However I will say that I hope you are able to live a good life, despite the impossible challenges of everyday life living with this disease. I wish you all the love and happiness in the world, even though I will never be able to understand what you're going through. May God be with you.
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wow... I wasn't aware that there was so much about this on DA... I know how this is though...I started my period at 11 yrs old... never had a cramp till I was 13... it got progressively worse over the years and about six months ago I had my period twice in a month... after that it just got worse. Then I had it for a whole month... then another two weeks... I have already been diagnosed with ovarian cysts 4cm in size... and on top of that they're positive I have endometriosis... I'm not as scared as I should be... but it's nice to know I'm not alone out there...
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I have tears in my eyes... I'm all choked up. I've suffered from Endo for six years before it waas diagnosed and removed in an exploratory surgery last month, now that I've researched it these past few weeks I live in fear of it returning. I'm scared. The surgery was supposed to be a new start on life but now I see that endometriosis has no cure and it regrows so often... Not to mention all the other diseases that I'm more susceptible to now... I've always known something was wrong and I've done everything to have a positive attitude, but deep inside I'm so scared. And I don't think any of my friends or family can understand.
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I know this feeling to well. I'm scared, and I don't know what's to blame for it. I have endometriosis, and when I went to the doctor's, it was like a guessing game. "Let's see what happens if we do this", is not how I want to be treated. When I was put on birth control, I wantd to die every day. I was taken out of school, I hadn't talked to any of my friends in months, it was hell. And the doctor considers that somewhat of a sucess. I'm tired of no one having any understanding of this disease. If you tell someone you have cancer they feel bad for you, try to help you, doctors try to help you too. I f you have endometriosis, everyone just gives you that same deer caught in the headlights look. "This is a disease." THIS IS A DISEASE, I say in my mind, over and over, but will anyone listen?
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Your words inspired me... I've been diagnosed with endometriosis just a couple of months ago. I'm the only one in my family that has it, and I'm also struggling with an immunity deficiency disorder, that I found out I had last year. No one can understand the pain that I'm going through, and how much I've been through. Now I know I'm not alone with this problem. Doctors have told me the same things, have a baby or get surgery. Its horrible thinking that I am just 16, and they told me these kind of things just to fix myself. So thank you for these words, it nearly made me cry.
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My sister suffers from endometriosis and she has been trying to get pregnant for a few years now.. to watch her go through the depression of the thought of not being able to have kids.. the fear of having a girl and passing on the disease... the fear of never having children and just living with the pain for the rest of her life.
It's sad to watch her go through it.. and I've been experiencing incredible pain, like the pain she describes, and I'm afraid that I may have endometriosis.
It's a terrible disease.
Thank you for this image.
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Most cases go undiagnosed for an average of nine years. If the pain is causing a negative impact on your life, please speak with your GYN. If you're not seeing a GYN, you should be... endometriosis or no. The only way to know for sure is through surgery, so if it's something you can deal with then I strongly recommend holding off. It's sort of like poking an angry animal with a stick if you go in poking around with no plan in mind other than to test, it gets angrier! lol
A couple of things you can do without needing to have it checked that made the biggest differences for me are to lower your red meat and sugar intake. Completely stop taking in caffeine, and be aware that chocolate has caffeine as well! 
I also took herbal pills that were pine seeds because there's some research showing that they help to control the spread of endometriosis. This of course isn't something you have to do, especially since it's still being tested for this purpose. Taking it though will not harm you in any way.
As always, I strongly recommend doing your own research as well and getting as educated as possible. Especially do your homework when trying to find a GYN who has *true* experience dealing with endometriosis.
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Thank you so much for the image, your intelligent words, and your caring response.
I showed my sister this image, and your comments, and she nearly started crying.
She thanks you for this, and she is wondering if it's okay for her to print it off as a reminder that she is not alone in this struggle.
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Absolutely not! It really helps me to know that this has helped so many, so please do! I wish you both the best of luck.
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This is an amazing post. Thank you for taking time out of your day to post how you are feeling. For once I feel like someone in this world knows what I am going through. I hope you are doing well after your hysterectomy. 
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Having that hysterectomy was the best choice I could have made! It's not the right choice for everyone, but for me and my specific circumstances it was. I feel better now than I ever! It's meant so much to me the comments and private notes I have received in response to this post. Thank you so very much & please feel free to use my email that I gave in response to the note you sent. I look forward to hearing from you!
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This is incredible. It brought tears to my eyes. I have endo as well, it's very frustrating and sad and scary and painful. Thank you for posting this!
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*hugs* I'm glad it helped you. I know bad the need to feel understood is when you have this disease and no one seems to *really* get it no matter how much they say they do.
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Thanks. Good luck with everything
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I'm 18. Just to be clear I haven't been diagnosed with Endo, but I'm very very sure I have it because it runs in my family. You really can't explain to other people just how bad the pain is, because it's everywhere and nothing really helps. All you can do is wait for it to end and cry. The thing that scares me the most is the possibility of not being able to have children when I get married.
I've had family with cancer as well and it's scary but people don't realize that there are other things out there that are just as bad.
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Luckily, I was adopted by my family so I don't really care a whole lot about blood relations. I've always planned on adopting at least 1-2 children. I *did* want to experience being pregnant, the whole idea just seemed so... well, you know.
If you think you have endometriosis and it's effecting your life in a dramatic way, please push to see a GYN! Your GYN might not be an expert, but at least they can get you started and find someone who can do the surgery to test the tissue.
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I think it's great you want to adopt, and yeah from talking to my aunt (she adopted a little boy) she says she loves him like nothing else but that having a child of your own is just different.
Yeah I've actually got my first appointment set up for next monday. So fingers crossed, and we'll see what comes from it.
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Oh! Let me know how it goes! I'd be more than happy to help in any way I can!
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It went well. Since I'm not married or sexually active she just asked me questions and put me on some birthcontrol to help it and hopefully perserve my fertility. Thank you!
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How's it been working for you so far?
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Great, I can already feel a difference. No more pain!
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That's awesome! I'm so happy for you!
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i have endo and it kills me... i'm 19 yearsold, and i was diagnsed last may when i was 18. I've 5 miscarriages painful periods and also have PCOS polycystic ovarian syndrome. .... i've been in A and E numerous of times because of my pain.
they said I can't hve endo because i'm 'too young' but they did a lapraoscopy on me and they said i have it and thats whats caused my miscarriages....... its hard for people to understand. I've taken alot of time off work because of my pain and can barely move when it gets so bad...
So i understand you xx
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