Sunday, March 10, 2013

endometriosis awareness.

The other night, while browsing through Thought Catalogue, I came across an all-too-familiar word in one of the headlines. Endometriosis. Clicking through to the article, my eyes started to well up with tears as I read line after line of painful truth. It was so relatable for me. Almost too relatable, in fact.

I found myself feeling embarrassed - like someone had published my most private experiences for everyone to read about. By the end of the post, I was split between comfort and heartbreak. Comfort in knowing that I'm not crazy and this struggle is really as hard as I feel like it is. And heartbreak in reading the pain someone else has gone through with no happy ending or resolution.


March is Endometriosis Awareness Month. And after struggling with my pain for 9 years, some doctor finally threw out the E word during a conversation and brought that possibility to the table. 9 years later we are looking at my symptoms, seeing how they line up perfectly to an endometriosis diagnosis, and scheduling a laparoscopy. This leads me to believe that there isn't nearly enough conversation about this disease. And after reading that article, I was inspired to step way out of my comfort zone and share a little bit of my experience. It isn't pretty or fun or positive. And I won't blame you if you don't want to read it. But if you do, I hope you read it with an open mind. And I hope that it enlightens you in some way and that maybe you will gain some understanding about this painful condition that millions of women suffer from, but nobody talks about.



I have chosen to insert a few of my own thoughts and experiences between the words that resonated with me the most from the anonymous article on Thought Catalogue. I'm pretty nervous about this, but here goes...

"I am trying to live a life with a debilitating illness that no one can see. An illness that has cost me, and many women like myself jobs, relationships, money, dignity, and strength. Some days I cannot physically get out of bed... I take the pills, but they don't help..."

I was in 7th grade when the doctor recommended that I try hormone treatments to control my abnormal symptoms. I remember sitting across from the assistant principle at my Junior High, with a plate full of brownies that my mother had made for her. A peace offering. We explained the situation to her and she gave me a little yellow pass to keep in my backpack and whenever I needed to step out of the classroom, I could show my teacher the yellow slip and go to sit in her office, curl up, and cry until the pain from cramping and nausea from the hormones had passed.

9 years later and I've tried them all. 9 different contraceptive pills, with more pills to combat their side effects, hormones, ibuprofen to "help the pain", specialists who send me to other specialists who send me to other specialists just so I can hear those same words over and over. "I'm not really sure what's wrong...." but how about we do some more bloodwork and I'll send you to the specialist down the hall.

Somewhere right after high school I fell into a depression - a side effect of one of the many medications I was on at the time. We took a break from prescription drugs and searching for answers to get my mental health stabilized. But the pain continued and eventually even worsened. So we found ourselves thrown back into the ring.

"I have been to the Emergency Room, screaming and crying and in so much pain that my body was contorted from the waist down, and doctors treat me like a drug seeker..." asking if I've taken Advil or suggesting 800 mg of Ibuprofen, after I tell them the progression of medications that I've taken over the years and how the only thing that we've found to even remotely control the pain is Percocet.

The Percocet makes me so nauseous that I can't keep down food or even lift my head after I take it. I hate it and the way it throws me back down once it wears off - but for a few short hours, I can lay still and sleep. So I take it. They don't trust me enough to give me anymore of it, though. And I have to ration the little bit that is left. "So I sit there and pop Advil, hoping it will take away the feeling that I can only imagine is similar to being shot in the stomach multiple times a day. The hormones give me migraines. I take Aspirin. The Aspirin and [Percocet] tear holes in my stomach" causing the following weeks to be full of pain and vomiting as well.

We keep detailed charts of when I take the pills. Columns for each different medication with times written underneath them. My mother comes into my room every 3 hours during the night to lift me up and give me more medicine because if we skip a dose by even a few minutes, the pain will rush back, overbearingly. I set my own alarm but I can't get myself up. I'm too groggy and confused from the drugs.

"My iron levels are low. I am always pale.... I have changed my diet, constantly following the trends on what is good for me to eat and bad for me to eat.." Most recently, giving up gluten in the hopes that it will minimize any of the pain or give me even the slightest improved chance to one day have children of my own.

Insurance refuses to cover the procedures that the doctors recommend. We pay for them out of pocket. They never work, anyway. Every day it becomes less and less likely that I will ever be able to conceive. Doctors constantly tell me to consider freezing my eggs, warning me of the risks if I don't and informing me of the struggles that I will likely have with miscarriages. People are accidentally getting pregnant all around me. I'm only twenty-two and I don't want to think about having children right now but it's being pushed at me from every direction. There are decisions to be made that will change my entire future and I'm not ready to make them. The word hysterectomy gets thrown around a lot too. I don't want to forfeit my chances to be a biological mother yet, but everyone on the outside makes it sound like it's an easy choice - It isn't that simple to me. I'm scared.

"Everything about this disease calls for sacrifice. I have to sacrifice my body to end my pain. But people don't understand this... They refuse to understand a disease that they cannot see..." Every time some well-intentioned woman tells me "Yeah, I get bad cramps too" as I silently hunch over in pain, I have to bite my lip. I know that I'm seen as a weak person who can't handle pain, when really I'm stronger than I'll ever get credit for. "There is a part of me that always feels less than everyone else. I am broken and I try hard to convince everyone that I am not. I very rarely open up about my disease to anyone, and even when I do, I spare the "gory" details. I spare the fact that a good 70% of my week consists of being wrapped up in bed with heating pads and... pill bottles while I cry and scream because I just don't know what else to do." I can't handle another uninformed person giving me advice or telling me to go through with the next surgery. They don't understand what a struggle these 9 years have been. And how many times I was told "this will work" only to find myself worse off in the end. To them, it looks like a quick fix. To me, it looks like quicksand.

"I fear. I hate when people tell me I can get over this, that things will get better, that I will feel better" if I try whatever they think is best. "I fear that I will never achieve what I want out of life because I will always be held back by pain." I am kept at home while my friends leave on cruises and my family gets on airplanes because over the years, it's become too risky for me to leave. I never know when the pain will rush back and it only takes a moment to become debilitating. So I sit and wait. I leave messages with surgery schedulers who are overbooked and won't call me back for more testing. I make appointments with more specialists who will tell me they don't know how to fix me. "I fear that this disease will continuously isolate me from my own life... I fear my interactions with people will continue to be tainted by perceptions that I am only pretending to be miserable for attention" or I could be better if I 'really wanted to be'. "I don't want sympathy... I want normalcy. I want to be someone whose life hasn't been wasted in the waiting rooms of doctor's offices and emergency rooms, on the couch or in bed watching TV. I fear that people will never take the time to understand and will forever ask... why I don't have children... why I came into work late, why I didn't come to work at all, why I get fired from every job, why I can't just get over it?"

I never want it to define me.
But it's a weight over me that I can't lift.
Every month, a week and a half of my life is stolen from me as I succumb to the pain.
These are my darkest moments, and I live the rest of my life in subconscious fear of when they will be back again.
It's never long.

Endometriosis UK  .  Endometriosis Team Facebook .  Resolve : National Infertility Association
Endometriosis Foundation of America .


I didn't write this to vent, complain, or be negative.

I wanted to share my experiences to start a conversation and an understanding 
between women who struggle with endometriosis and the people in their lives.

I just believe that all things happen for the good of something else. Even the negative things.
So maybe the good in my negative experiences will come from sharing my story and having at least one person learn from it or relate to it.

I know I was really moved by the article I read and it just made me feel less alone in this,
so I hoped to do the same for someone else.

I'll be back here with happier thoughts soon. :)
Thank you for reading.

26 comments:

  1. Wow, I've never even heard about this condition and I'm so sorry you have to go through this. I can't imagine what it must be like although the bits you've shared have given a harsh and realistic insight. I am slightly older than you but the decisions you have to face are monumental and that is so scary. You're very brave for sharing your story, and the worst part (apart from the pain) must be the lack of understanding from other people. It's sad to hear people have thought you were attention seeking. I really really wish you have some progress in the near future and you feel some relief and, as you put it, normalcy. I'm sure by sharing your story you will be helping others who suffer the same condition know they are not alone.

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    1. Thank you so much for your kind words and encouragement. I'm so glad that you learned a little bit about something you'd never heard of before! Makes me feel like we're one step closer to earlier diagnoses for girls. Just have to get the word out. :)

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  2. Thank you for sharing your story. I am surprised by how some people are so insensitive with regards to others' health issues... I had a related experience in that doctors couldn't find out why I had these weird tension headaches so, while I was nowhere near as affected as you were, I can understand your frustration and the feeling of feeling helpless. Once they finally found out I had a tumor, things started to improve. I hope that with your persistence you will find someone who can help. I'll be hoping for you! xx

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    1. Thank YOU for reading! I'm glad to hear that your health improved once they figured out what was wrong. That whole waiting and wondering part is the worst! A tumor sounds terribly scary - I'm so glad you're alright! Thank you for the well wishes.

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  3. Kelle, I'll never understand what you're experiencing but here's what I know: You are an awesome shinning person, you exhale happiness and good vibrations. Life is most of the times unfair and ruthless; bad things happen to good people for no reason and that's unlikely to change. I would like it to, but that's the way it is. Nevertheless, it's people like you who make this life worth to be lived, it's every time you smile or sing that this world becomes a better place. Nothing can take away from you the joy of a laugh, the pleasure of the little things of life, the life-living thing. You taught me that throughout your vids, photos and writings. You taught me that the moment I needed it the most, so I feel compeled to tell you this now: if the 70% of your life is doomed to be suffering and there's nothing that can change that (hopefully, there will be something), you have no choice but to make the 30% left happier and shinier. You are a rare, beautiful and strong being, don't let life take you down, please. This is not sympathy, this is sincere and truly earned admiration.

    Your friend across the ocean.

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    1. I'm so thankful to have met you through my blog, Andres. You are such a kind person and always offer the most sweet and inspiring thoughts. Thank you so much for reading and for sharing such positivity with me. I sincerely appreciate it!

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  4. thanks for sharing kelle... praying.

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    1. Thank you for reading and for your prayers, Katie!

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  5. I don't have endometriosis, but I do have a digestive autoimmune disease. From what I just read, it seems that even though our symptoms are different, our experiences are just too similar. I don't look sick; people tell me they get stomach aches, too; they tell me to try this pill or that diet because it worked for their cousin; they tell me to just ignore it, to be happier; or that I'm making it up in my head; or I'm just looking for attention.

    I worry that they'll look it up on WebMD, see that one particular symptom of diarrhea, will think I'm gross, and will forever treat me as a symptom, instead of a person.

    I'm always afraid people are going to dismiss me because it's not cancer, and that, along with diabetes and heart disease, is pretty much all everyone hears about in the media, and if it's not in the news, how bad could it be? It's only when I tell them that my disease caused me to get multiple blood clots and then I had to take my colon out if I wanted to live, that they start to realize that yeah, it's pretty freaking bad.

    I could go on, but I think you get the point.

    You're not alone, and there are many of us who know how strong you have to be to live with an invisible disease. You're very strong, Kelle, and we all know that. You're still optimistic and see the good in life; that's amazing, and only a strong person could do that.

    <3

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    1. Oh, Crystal. I'm so sorry to hear a little bit about your experiences. I'm glad we can relate to each other on some level, even if our illnesses are different. You are also a very strong person. I admire your courage and will think of your bravery whenever I get nervous for my little surgeries and things. You'll be in my thoughts and prayers!

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  6. I had a friend who has endrometriosis and it just seemed horrible. We've lost touch, but back in college I know she underwent surgery to try and help. I know it's so hard for most people to understand a sickness they can't see, or maybe have never heard about. It's good that you posted about your struggles and helped raise awareness for it. I struggle with menrohaggia, but am so lucky that it can be controled by birth control and isn't painful.
    I know it probably seems horrible and you have random people telling you all the time what you should be trying, but have you ever tried seeing a natural doctor who uses homeopathics and other medicines that don't have the horrible side effects, or just treat the symptoms and don't actually heal? Sometimes they can do amazing work.
    I hope that you're able to find some answers and find a doctor who is willing to just work with you instead of just passing you off to someone else. Keep posting, and keep us updated.

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    1. Thank you for reading and for your kind words! It's very encouraging to hear from women who have endometriosis or know others who have it and got better after having surgery. It makes me hopeful for the future at a time when I very much needed a positive boost! I have actually looked into homeopathic remedies and have tried many of them, but have yet to see a naturopathic doctor. I completely believe they can do wonderful things and plan to look further into their work! Thank you again for your well wishes and best of luck to you!

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  7. Thank you for being so brave and sharing. This was truly enlightening, and I really hope things improve for you.

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    1. Meg, thank you for reading and for being so willing to learn about something new. I greatly appreciate your comments, blog-friendship, and well wishes. :)

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  8. You are so brave for sharing something so personal and intimate, you are in my prays dear :)

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    1. Thank you so much! I can't tell you how much the prayers mean to me, or how much it means to me that you took the time to read this. So appreciated!

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  9. I will never compare what you are going through and what I go through but please believe me when I say I can understand the shame and embarrassment you speak of. The more I talked about my disorder, Trichotillomania (Trich), to people, the more it became easier to accept it and not feel ashamed anymore. With Trich, I've avoided years of slumber parties and pool parties and missing important events from childhood, high school, etc. In no way am I comparing the pain you also have to go through so I am sorry. I do understand the emotional pain though. When I do have the time and internet to look things up I will learn more about it so thanks for sharing. I only knew of what little you told me but I did mean what I said every time I said it: I really hope you feel better (even if temporarily) and hopefully there is enough research that leads to a cure. Now that we've swapped some of our stories hopefully we will learn a little bit more about each other. :)If you ever want to talk about the our illness and disorder and how sucky they both are, please let me know. I am so down. haha I hope you try the quinoa recipe I gave you and love it! And I hope it really does help with the pain. Stay strong, girl, and take care Kel. <3

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    1. I will look up more about your condition as well, since I only know the things you've mentioned to me in passing. Thank you for the comment and the well wishes and I appreciate you being there if I ever need to talk. Sometimes just knowing that someone is willing to listen is all you need, so remember I'm only a FB message or a snail mail letter away haha. At least for the next year or so... :)

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  10. I need to start this comment by saying THANK YOU! you were nominated on my instagram for a contest I am running thats how I came across your blog. my shop is @denimloversetc my personal is @rachbos4. I to have endo. reading your post was like a piece of my sole. I cried and smiled knowing that I am not alone. I do have kids as I did not get diagnosed until AFTER my first son. I did all the 'dr. shopping' until I found the person that sat and listened for an hour and validated everything I said. I kept saying that I swore my c-section was the reason for this. and everyone said no no. listen to your gut in everything you do. There are reasons why. Not even having the right dr. makes things that much better. but it does help. Thanks again for your words. I know you will have kids of your own when the time is right. Feel free to follow along on my instas if you would like!

    Rachel

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    1. Thank YOU for stopping by and reading! It's very encouraging to hear a success story from someone else who went through a similar experience with endo and was able to have children. :) And yes, doctor shopping is probably the only kind of unenjoyable shopping that there is in this world haha. Thank you for your comment, kind words, and for sharing with me about the instagram contest! I will have to check it out.

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  11. Such a unbelievable and moving post. It can be terrifying to share something so personal but can be so rewarding when it helps someone else. So brave of you to share.

    xx n

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    1. Thank you so much for reading, Nathalie! It's been nice getting to know you lately via Instagram :)

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  12. Oh Kelle, I am so sorry to hear that you are going through this. I knew that endometriosis was painful, but I did not know how excruciating or debilitating. When I was struggling with my health issues, it was very difficult, but thank God that when I changed my diet and took vitamin supplements, the problems were fixed. I feel for you. I know that you do not want pity, but respect and understanding, which you so deserve. Thank you for sharing this, I think it gets everything out in the open and will, as you say, ultimately bring about something positive. I would also be wary about a hysterectomy, though I would not have any idea on what would be helpful. A warm and loving hug, from one woman to another.

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  13. Also, I know it's a very difficult conversation to have, and I have no advice to offer, but merely ideas. I hope I am not stepping out of place. I went to a naturopathic M.D. in Covina who is very knowledgeable. If you want his info, I would be happy to give it to you. I don't know if it would help, but who am I to make that choice? Also, there is the possibility of a surrogate. Silver lining? No pain of childbirth, at the very least. Any time you need the support of a friend, I am just a phone call away. Prayers, dear. You are such a wonderful and special young woman.

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  14. Oh, I just read your story and I'm sorry to hear you're going through that much pain so often. You are a very strong person and I admire a lot you shared your thoughts and feelings, it needs a lot of courage. It must have been hard,since you 're not used to share your pain at all. You have to ignore people that don't get what's your condition. Not everyone can understand and surely not everyone can be strong enough to deal with someones bad situation. I send you all my positive energy even though it's been a while you wrote this. I'm glad to see you smiling at the rest of your posts :)

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  15. I'm so happy I have discovered this at the best time. I'm struggling to come to terms with my diagnosis last week and this is exactly what I needed to read. Thank you for your bravery. <3

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