nav

Saturday, March 2, 2013

why?


i live with a disease called endometriosis.
if you say you have cancer, people understand what that means. 
if you stay home from work with a migraine, your boss comprehends what ails you.
if you say you have endometriosis, you see a blank stare looking back at you.

how do you tell people, in a way that they can easily understand, i have endometrial cells that grow outside of my uterus? how do you tell them that this causes crippling menstrual pain, fatigue and infertility in a casual conversation? how do you get them to understand that it is not "just cramps" or "female issues" that everyone experiences? 

i hide my pain most of the time. the pain that so many others don't understand. or i tell people my stomach is upset...something they can wrap their arms around. 

but why? 
why do i have to do this? why aren't people aware? why don't they understand? why haven't they heard of this disease that affects an estimated 176 million girls and women worldwide?

why is it that many doctors don't even understand this disease? they continue to misdiagnose or fail to diagnose it for an average of eight years. imagine knowing something is wrong with your body and telling your doctor...only to be told "it's nothing" or being misdiagnosed over and over again.

endometriosis is common. it may even be genetic. but no one ever talks about it. why is the cause unknown? why is there no cure? i'm expected to suffer through the symptoms or "treat" (which means mask) them until i ultimately get a full hysterectomy - removing my womb, fallopian tubes and both ovaries...basically everything that makes me a woman. i'm also at an increased risk of developing ovarian cancer. sigh. 
why?

there are too many people suffering for us to just turn a blind eye.
can someone please pay attention to us?  

my body is a battleground. 
and right now endo is winning.

march is endometriosis awareness month.
so i can't keep quiet. i must do my part to spread the word about all things related to endo.
below are some additional resources, if you think you or someone you know may have this disease...


article: struggle of living with endometriosis
myths and misconceptions about endometriosis
blog post: march 2012 - facts about endometriosis
research: violet petal study is accepting endo patients for an investigational medication study
donate: to make a donation to fund research that may prevent endometriosis in the next generation of women, click here



28 comments:

Adrienne Clark said...

I so needed to come here! I have endometriosis and it is currently kicking my booty! Just went to gyno and am scheduled for an ultrasound to make sure my flare up isn't a cyst, otherwise I will be headed back to the OR for my third laparoscopy! Ugh. Thanks a million for sharing! I had no idea that march was endometriosis awareness month, which is probably fitting for me because its my birthday month and I've had it since high school! Email me if you ever need to chat girl! I know what you're going through!
Adrienne

Jessica @ Little Maple Leaf said...

I'm so sorry you have to suffer through this.. It sounds awful.
Hopefully there are ways around it to make the pain not so bad?

Emmy Barnes said...

I understand what it feels like to know something is wrong with your body but be ignored by the very ones who should be there to help you. It's frustrating and sometimes makes you just want to punch a wall. But I'm happy you wrote this post.

JP Lord said...

I was diagnosed with stage 2 endometriosis when I was 18, sone then I have progressed to stage 3. I was told I'd never have children, and yet I have a beautiful 3 year old daughter. Thank you for posting this! Raising awareness of this painful and sometime crippling disease is so important!
Xx

suzanne said...

My head is about to explode from this post. This is amazing information for women with endometriosis and especially the increased risk of cancer. Can I repost and credit you on my blog?

You have no idea how happy I am that you posted this.

Kate said...

i'm glad you posted this. i have endometriosis, too. i have experienced so much of what you said. unless you have endometriosis, you just don't get it. it's not just cramps. it's incredible pain, it's a constant issue (or at least it is in my case. two periods a month. lots of fun, right?) and it's scary not knowing when/if you'll ever get pregnant. there does need to be an increase in awareness and i appreciate you getting the word out there.

Alicia said...

Endo is the worst. The worst. I wish there was a cure. I wish it didn't cause the physical pain and emotional upheaval. Hugs.

Laura said...

I feel your pain. It drives me crazy sometimes trying to explain how awful I feel, but it seems like no one takes it all that seriously because I still go about my life as best as I can... It's so frustrating, I do find comfort in knowing that there is a huge group of females that do know exactly what I am going through.

Stay strong! :)

AM said...

So sorry you have to suffer through endometriosis, talking about it is important as it will help raise awareness. What amazes me is how little the medical/scientific world seems to know about womens bodies, conditions and hormones. Just recently I read an article where they found that a woman's body processes many medications differently than a man's. More research and time has to be devoted to such stuff because too many women are suffering when they should not be. Great post and maybe we women can all find a way to help each other as well.

Gypsy Mama said...

I hadn't heard of endometriosis until I worked at a health store and I started getting ladies looking for natural support. We need more education and public awareness about women's health issues.

Dream Chase said...

Jessah, I love your blog! I am so sorry about your endo, but I love how you can speak from the heart. I wish people were aware I wish all of this was easy to explain. I just want to say *hugs* and I am so proud of you. I cannot wait until that BFP is yours.

AMY MICHELE said...

You are right! There should be something that Dr's can do for this! It is very painful & hard to explain. I am so sorry that you are going through this!! I hope they find a way to help you not be in pain or find a cure. Endometriosis isn't new - in fact it's said that Marylin Monroe suffered from it. Leading to her taking pain pills to dull the pain - hopefully Dr's figure out how to heal this soon! Wish I knew the right words to say .. <3, Amy

Lily said...

Wow!! I had no idea that this even existed! Thanks for sharing.

Lisamarie said...

I'm so sorry you deal with this, Jessah. Your blog post is so beautifully written. You are so gorgeous. I hope knowing that eases your pain a little! =)

Katie Broderick said...

Thank you for sharing this Jessah! I too have endometriosis as I was diagnosed with it over 5 years ago and it's awful to live with everyday but I make it through. I will be sure to spread that it's Endometriosis to help make others aware too!

xoxo
Katie

Emily said...

I am so sorry you have to suffer with endo, and you are right...there needs to be more awareness! Thank you for posting this so more people understand!

Amber said...

Makes me wonder what "normal" menstrual cramps are in comparison to endometriosis. I guess we will never know. But now when I think of the girls who suffer more during their monthly, I will wonder if they have more going on than normal.

Jenn said...

Oh my goodness. I just came across your blog from the Tiffany's & Co. giveaway and this was the first post I saw. Honestly, it brought me to tears. I HATE that other people struggle with this but it makes me feel SO. MUCH. BETTER that I'm not alone! It's so hard to suffer though. It's awful- AWFUL. I suffered from extremely painful periods & all sorts of stomach problems for YEARS until I was finally diagnosed with Endo. I knew that it was the cause. My mom had a full hysterctomy at 39 because of the severity of her pain & my grandmother had the surgery around that age too. I still suffer and struggle. Nothing, almost NOTHING, helps the pain. Sometimes, it just feels so hopeless. It's debilitating. It's crippling. It's hard because so many people just don't understand. It is SO incredibly challenging to suffer through this "silent pain" where you can't quite explain it to people or your doctor brushes it off as nothing time & time again.

I had NO IDEA that March was endo awareness month. I can't wait to utilize this month to advocate for my health, your health & the other women suffering EVERYWHERE.

Thanks for reminding me that as challenging it is. I'm not alone.

rhon said...

I'm so sorry you have to deal with this.

Life as a Bird said...

I have endo, and I love finding more women that have it too. It's good to know their are women out there that understand what I go through. I am only 22 and I found out last year that I had it. I agree that doctors are annoying and are not understanding about it. I remember saying I was in so much pain and the doctor dismissed my pain and said, "well the cysts on your ovaries are only 4 cm. You shouldn't be worried until they are 5 cm". I'm glad you shared this with everyone. I understand you and feel your pain ;)
Hang in there!

Em said...

Thanks so much for stopping by my blog! I'm so glad I found yours as well. Thanks for writing this post about endo. Even as an infertile woman (who doesn't have endo), I honestly don't know a ton about it. It boggles my mind that it often goes undiagnosed for eight years or more. I'm so sorry that you and so many other women have to deal with this. I hope and pray they find a cure someday.

Rachael said...

Jessah,
Thank you for sharing the reality of endometriosis with us. My grandmother just had another surgery for hers. I cannot imagine living with that kind of pain, I don't know how you do it, but you are amazing.

I hope that you can find a way to take away the pain and continue to spread the awareness.

I wanted to talk about endometriosis on my blog in the near future and know that I can't write about it with this passion, can I repost and credit you on my blog?

Sending happy thoughts your way!

Caroline said...

Great post! I think I've heard the name of this disease before, but I honestly had no idea what it was. I think the problem with living in the modern era with so much advanced technology is that we are able to discover SO many more illnesses and diseases that we never had any idea existed before. And any variation of those diseases is an entirely NEW illness with just as long and confusing a name. The consequence of this is that there is a lexicon of tricky names and tough diseases and we fail to be aware of all of them.

The most important thing in this day and age when it comes to diseases and illnesses, I think, is awareness and making the illnesses personal so that we all work as one to challenge and beat each one as they come along. Thanks for this post - I'm definitely aware of endometriosis now.

Laura Rahel said...

always in my thoughts and prayers, friend.

xoxo

Allison said...

I somehow came across your blog and read this post. I don't have endometriosis but my close friend does. I wish more people knew was it was. In fact, I didn't know until I started asking her about it. I am so glad that you're putting yourself out there and hopefully this will cause people to be more aware of it. I am going to definitely consider donating to research in this area. I think all women should really consider it. Prayer your way!

Tif said...

Endometriosis, tumors, scar tissue...and cysts that ruptured from the time I was 12 - 29. I had to have a hysterectomy when I was 29, they said I'd have cancer within the year if I didn't. They were only going in to drain a grapefruit sized cyst that had ruptured...my poor husband had to make the decision for me, when I woke up...I was devastated. My heartfelt sympathies and prayers go out to you sweet girl!
XOXO,
Tif

Laura Cee said...

I went through a full hystorectomy in November. Before that my life was a monthly hell of pain; You know what they say about hind site. Many doctors, many warning signs but all saying it was normal. How is pain normal?
I am fortunate to have always felt if its meant to happen I will have a baby; for those who dream of families all of their lives this is heartbreaking and should not be. So many of us suffer in similar and very different ways that we should not have to and yet we do and there are so many of us.
Throughout my journey I always felt ignored by the medical field.
I am telling every woman I know or come in contact with that suffers monthly, be aggressive about your care, bug those doctors and don't settle for the common excuses they give to women.
Thank you for your blog, I hope many young women find it and take action with their care.
I hope all your dreams come true and many others as a result of your words.

gayle t. said...

I understand where you're coming from, feeling like you have to explain more than you should have to for a condition that's common. But, many people (including myself, and I do try to stay informed) don't know about endometriosis. Before reading your blog post just now, I had heard of it, but didn't know what it was, and still don't know what an edometrial cell is. I will have to Google it.

You don't owe anyone any more explanation than you're comfortable giving. HIPAA says you don't have to offer any information about your health to your employer. But if you're out to raise awareness, and use your experience to tell people what this condition is, what it does, what it means, etc., then the Lord will help you speak outside of your comfort zone. He'll help you be patient with those who are uninformed/ misinformed.

I am very appreciative that there are women in the world who will use their pain (both physical and emotional) to help others, encourage others, and further the awareness that is so clearly needed. You have courage, and I just want you to know, though I don't know you personally, that I'm very proud of you. :) Keep at it.

xoxo,
Gayle | Grace for Gayle

Blogging tips