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Robyn’s Story (Endometriosis)

Robyns Story EndometriosisI’ve always known that my story was meant for something greater than just the experiences I have had, and I was reminded last week about how strong I really am and how much my story should be told. If in my sharing, I help just one woman who is going through the same thing, then this is worth it.

If you, or anyone you know, has dealt with chronic pain, it’s one of the hardest things to go through. It eats away at your soul. It attacks you physically, emotionally and mentally. It’s so difficult having an invisible illness that includes chronic pain, because on the outside, it’s as if you are the same as everyone else, but on the inside, it’s a totally different story.

My everyday life has always been 3 really great weeks and one really difficult week, every month, every year, without fail. Since I was 14, I’ve been diagnosed with a disease called Endometriosis. My Endometriosis causes pain like I’ve never experienced before, and I’ve experienced some real pain over the course of my life! If feels like I have barbed wire swimming around in my belly, digging in with each and every move I make. It’s constant and consistent, and every passing month, it just gets a little worse.

Here’s what I have tried so far: 2 surgeries, 2 rounds of medically induced menopause, 6 years of shots in my hip every 3 months, years and years and years of more shots, pills, hormones, appointments, drugs, and doctors upon doctors telling me I was faking it, that I was a drug abuser, that I need to just take Advil and get over it, that it wasn’t that bad, and then having to fly out of state every 3 months for the last two years just to get my prescription.

This last month was the first time in about 15 years that I had to go through it without my pain medication. There was a mix up with my prescription, and I had no choice but to fight it alone. I honestly didn’t think I was going to make it. For the first 4 days, I struggled to teach, to stand, to smile, to be normal. By the end of the 4th day, I couldn’t even fake it anymore. Every moment that I wasn’t at work, I was home crying because the pain was so severe. The next 4 days I didn’t leave my bed. I got up only a few times a day and went straight back to lay down. I was either in tears, throwing up, or I was sleeping out of exhaustion. I was so tired and frustrated and reeling from the constant pain that would never go away. I started to doubt everything about myself and it took me to a darkness that I hated being a part of.

This disease will never go away for me. It’s a disease with no cure, very little info and very few doctors that take the time to understand it. There aren’t any big foundations fighting for it or support groups to handle it, except for this one! I realized just how little information is out there, and it makes me really sad. I know there are women out there just like me, suffering from pain so severe that it rules every moment.

I have fought and fought for my pain medication, and it makes those days functional. I feel normal, and I can focus and do everything that I would do otherwise. Not everyone is that lucky.

I’m not sure what my next steps are, but after going through last week, I’m thinking of some things that I’d like to try to remind those of us with this awful disease that we’re not in this alone. No one should ever have to go through that alone.

Robyn
United States
Submitted 10/02/2014

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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9 comments

  1. Keri Corcoran Nikolajevic

    Love you cuz!!!!

  2. Charles Seil, Jeannie Seil

    Hang in there girl, from friends of your mom and dad. our thoughts are with you and also our love

  3. Dearest Robyn,
    I finally had a hysterectomy last year…good thing that I did. by the time my Dr. got in there my left overt and fallopian tube were fused to my bladder…:( It has been a slow but steady recovery and I am looking forward to may more years of a pain free life..not sure where you are with Children ext. but a hysterectomy is not the cowards way out(as I was made to feel) it simply was what needed to be done…God bless you sweetie and I hope this all turns around for you…it is a living hell……
    Much love
    Cie

  4. I am so sorry for your pain Robyn. My daughter just turned 27 and she has had 9 endometriosis surgeries. Her last one was a total hysterectomy in April and it made things worse 🙁 she will have her 10th surgery on Nov 7 for bladder and vagina reconstruction 🙁 I always believed her pain but the doctors never listened and always misdiagnosed her! I would give anything to help spread endometriosis awareness!

    • I have had a bladder sling and reconstructive surgery 4 years ago, and was doing great till now. I’m thinking a hysterectomy will finish this off. But now, I’m worried that it isn’t the way to go, but I don’t want multiple surgeries, I just wanna do it as be done.

  5. I feel like I am alone, I also feel and have been told I am faking this pain that I am a drug abuser. Take this birth control take this injection, this will work that will work! I have been going through pain for 6 years and no one(doctor) wants to help me. All I want is a Hysterectomy, I have my tubes tied and I am 34 years old. Please I need help, I have begged my OB to just take it and she wont, this is also my 3rd doctor

  6. Thank you sharing. I am 20yo and going through the exact things. My boss Meredith is a friend of yours and told me to read your story. Thank you for helping me see that I am not alone. I pray we find answers and strength from God. With love!

    Jess

  7. Dear Robyn,
    I am 27 and have been through almost the exact process you have. I had a FT job and I’m a FT mother of a 19 month old (looking to go back to work soon). Currently taking medroxyprogesteron 40mg daily, and my hormones and endometriosis is starting to overpower the med. My doc upped my dose which caused 3 straight weeks of the worst pain and then having a period monthly for 3months, until it finally got on track. I’m now having nagging pain daily, some worse than others and I’m scared because my doc said that one of the next steps would probably be another surgery, which was awful for me last time, my body went into hypersensitive mode and I was miserable, which brought me to my darkest time- so depressed from the agonizing pain trying to manage daily functions with a smile on my face while my insides feel they are being stabbed with a knife.. Anytime they have given me a temp pain med if I call to ask for a refill I always get the “this is not a permanent solution, this is the last time” like I am making it up, making me feel guilty for the pain I’m in.

    My questions for you, I guess, is 1. Do you have any advise? 2. Who/how did you find a doc that would support prescribing a pain med regularly & do you feel that was the best attempt to treat your pain.. 3. Did your body respond well to surgey?

    If there is any insight you can share on some successes you have had through your journey, I would be grateful to hear them!

    Thank you for sharing your story, it is nice to hear I am not alone and that there are women being treated the same as me through their process of trying to find some answers and relief (makes me sad that others are being treated that way, but it’s nice to know I’m not the only one).

    Happy holidays! I hope to hear back from you!

  8. Robyn,
    your story literally brought me to tears. I’ve been going through this as well since I was about 12 years old,I’m 31 now. To the t what you described is what I feel! The part where you said there is no cure,and very little information is what tugged at my heart! It’s so true. There are days I think,is this ever going to stop? Will I ever feel “normal”? Thank you for sharing. I’m having my first surgery in about a month, I’m so nervous. God Bless ~Jessie

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