Never share- Endo story

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*I'm going to introduce this post as the Never Share Endo Story because it was just that- a post that I vowed to never share. My heartache and pain overwhelmed me one day and I just thought if I wrote it out that maybe I'd release some of the pain. I never planned on sharing this, but I feel if we are going to get closer to a cure, more people need to know. And since this incurable disease continues to rip my life apart, why not spread awareness during the official Endometriosis Awareness Month? I had to share it. And there will be many posts about this disease throughout the month. I hope you support and join me in spreading awareness.




There are days that I think I need to wear a sign that says- I have Endometriosis and cannot have kids, stop asking. Other days, God gives me more grace than that to handle the whole situation, and I can explain it all with a smile on my face.  Fact is, for us, being 30 and married and NOT having kids really encourages others to ask why, when will you have kids? Do you even want kids? What's the deal? And honestly, when I get asked that question, even if it's someone who I've known forever, it's like they just sucker punched me in the gut. Infertility is hard people! If I want to talk about it with you, I will, no need to poke and prod me- the doctors do that enough! :)

(If you want to read more about the actual disease, please click the link- John Hopkins- Endometriosis, and at the end of this post, I will include more links for you to check out.)

  My case is a little different. I have had trouble with my body ever since age 11, painful monthly experiences, catching every cold, flu, virus that passed within a 5ft range of me. At age 18, I went to my first ob/gyn and she suspected it was Endometriosis, and put me on birth control. I say suspected because the only way to confirm the diagnosis is with exploratory surgery. At 21, I had a laparoscopy done of my abdomen and they found Stage 4 Endometriosis (the worst kind) - everywhere. Not only on all of my reproductive organs, but growing up my ab muscles, covering my intestines and attaching them to themselves, outside of my lungs and had even attached on the outside of my heart sac. She said it's as if an Endometriosis bomb had went off inside my body cavity. The doctor lasered off what she could, but then it was on to birth control that prevented me from having a monthly cycle in hopes that by suppressing the estrogen that it would control the Endometriosis and it wouldn't get any worse than it was.

  Fast forward a few painful years to 24- my life was nothing but pain and not being able to fully live without pain medicine, that I didn't want to take. I couldn't work as they would probably fire me for taking too many sick days. The pain was unbearable to the point that it was impossible to do any housework, to even go shopping, much less any fun get-together or event. My mental state as well as my relationships were at an all time low. I simply could not go on.  After praying day in and day out, (and boy was my faith tested to it's limits at this time)  and coming to the conclusion that I couldn't possibly deal with this anymore, I had to get my life back, I went back for another surgery. This doctor specialized in Endometriosis and it's very rare to find one that does (thanks to God for sending me to him). I was so thankful that he agreed to take me as a patient. Having studied my chart & files, he called me in and we discussed options. He was willing to go into this as a "clean up surgery" meaning going in and getting rid off any adhesion he could, saying that this could possibly leave my reproductive organs for a few more years, only lessening the pain a tiny bit.

  Then, he brought up the bad news- if he went in and there wasn't any good parts of the reproductive organs, would I be OK with a partial hysterectomy. Let me just stop and say this here, I was raised Catholic. Hence the reason why I didn't get to an ob/gyn before 18. Not that I disagree with my parents decision, but the thought of taking birth control much less having surgeries that prevented my God given right to have as many children as God wanted me to have, was not okay with my parents. I love them dearly for raising me with such strong faith because if it weren't for that faith, I would probably be... well, who knows where I would be and what state I would be in right now. But I know that I wouldn't be the person I am today without that faith.

Continuing, the surgery lasted hours longer than expected, and he came out to tell my family that there was nothing he could save. All of my reproductive organs were completely demolished by this retched disease and he had to remove everything. EVERYTHING. A radical hysterectomy.  I was 24 and would never be able to conceive, carry, or birth my own child. Since this is not what we fully expected, harvesting and freezing my eggs was never brought up beforehand. The doctor and I both thought he could clean it out a bit, and give me a few years to try to have a child. But this wasn't what was in the cards for me. My body was a war zone between it and Endometriosis, and Endometriosis had won.

This is so difficult to talk about. Y'all, as I said in the beginning of this post, I never wanted to share this. It hurts too much to go back to surgery day when I woke up and my Mama had to tell me that the Doctor had removed everything, and that I would never be rid of this disease, that I would have to be on Hormone Replacement Therapy for the rest of my life, and that I would never have my own children. It hurts so much to relive what I felt for the next months to years, as I frantically tried to get a grip on what had happened to me, and what would never happen to me...carrying a child. The long months and years of trying to figure out why this happened to me. My whole family jokes that everyone is "Fertile Myrtles" and have no trouble having babies. WHY ME?


    I sit here with a tear stained face, typing this despite of how much pain it brings because if I can reach just one girl, just one, and give her the hope and tell her about the love that God can give you, and how He can comfort you during the rough days, then all of this will be worth it. God is the only one, the only thing, my only comfort during that time, as well as this time. HE is the one who didn't let this disease dull my sparkle. Many friends who know me, and who I have chosen to share my story with, simply cannot believe that I have so much happiness and love left after everything I've been through. And I give it all up to God.

So please, if there isn't anything else you do for me, please share this post, share a photo, just spread some sort of awareness for this disease so that one day we can have a cure. Even if I will never be cured, just to know that they are coming close to a cure will give me so much hope!



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Check out more info on this disease and ways you can help!

Endometrosis.org
Endometriosis Research Center
Fight Like A Girl Club
Million Women March 2014

And please don't feel like I am doing this for any other reason other than spreading awareness. I want to encourage others, to help them in any way I can. And for me, telling this story is the worst thing that has ever happened to me. Something I never wanted to do, but I felt like God was encouraging me, telling me to share it, to give hope to others and shed some light on this disease to those who might not know about it. He assured me that everything would be OK, and you know what, as much as it hurts to type it out, I feel a sense of calm and peace about it. :)



10 comments

  1. Oh girl. I am so sorry. I know nothing I say will make anything better, but I am glad to know your story. I'm praying for you in your pain both physical and mental. This story broke my heart. And I had no idea how bad the disease could be. I will certainly try to spread the awareness.

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  2. Jessy girl you just touched my heart. I love you friend and I am so sorry that rhis happened to you. I am glad that you are sharing your story there is a whole community of silent sufferers who need to hear this!!

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  3. One of my friends had this. Thanks for sharing. Also there are people who like me who is getting older and not married or with kids and I still hate those questions like when are you having kids etc...so I can't imagine how it would feel when you know you really can't have them.

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  4. Hugs and love to you! Thanks for sharing your story, that takes a brave woman. Love ya tons!

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  5. Oh Jessy. I'm so sorry, girl. I will be praying for you and all of the women affected by this terrible disease. I am so proud of you for posting this. I knew very little about this disease before reading this post so thank you for the information. Sending tons of love your way tonight, friend. xo

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  6. Such a beautifully honest post! Such courage to share my friend. Praying for you that you will touch the heart of another girl who needs to hear she's not alone. And know you are covered in our Savior's love daily and in prayers from so many. My friend Laci had endometriosis and recently her and her husband just adopted a little girl. She shared a bit of their story on my blog - http://www.simplyfreeblog.com/2013/11/adoption-giving-thanks.html - but I thought you might be interested in reading their journey.

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  7. Hi Jess, we have similar stories. I have never shared about it publicly. I applaud your courage to give voice to this disease. Many blessings to you.

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  8. Sending you so much love and prayers! Thank you for bravely sharing your story with us.

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  9. You know, you really did inspired me. Although I dont have the same kind of desease, but just believing and loving God no matter how many trials and difficulties we have to go through.
    thanks for sharing.

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  10. you are such an inspiration & encouragement, you know that? :) thank you so much for being brave & vulnerable and sharing this story! it is so amazing to see how you share this story to point to God!

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