Wednesday, May 22, 2019
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Amanda’s Fight Like a Girl Story (Endometriosis)

Amanda's Story (Endometriosis) LRI have Stage IV endometriosis. I found out because an ovarian cyst landed me in the ER. Three times. Via surgery, I found out my particular case includes bowel endometriosis, with adhesions that have fused my colon to my uterus and cul-de-sac. I write this post as I recover from another battle with what I’ve endearingly termed #gutsofire.

My surgeon said my case is the worst she’d seen in her career. There were implants all over my pelvic cavity – on all my organs except my stomach & appendix. While the doctor was able to clean me up, she could not do anything about the endometriosis on my organs or about anything that’s fused together. I also have a cyst on my uterus. She couldn’t remove that, either, not due to impossibility, but due to her own comfort level. I appreciate her not experimenting in my pelvic cavity. She did say, however, “Should you ever need any more surgery, you need to go to the guy who invented it. His name is Camran Nezhat, here’s his website.”

I’m a 2nd year social work PhD student whose ultimate dream is to help homeless youth produce documentaries that will lead to systemic changes that will improve their lives. In order to make this dream a reality, I need to get a handle on the endometriosis wracking my body. There is no cure right now, but this surgery is the best treatment & Dr. Nezhat is the one who invented it.

It’s coming up on a year after my surgery and I still experience a ton of pain from the endo and I still don’t eliminate correctly. I tweeted @CNezhatMD & he told me to email him. I submitted my medical records & am now scheduled to have surgery with him on June 26th! I’m still working to raise the $5600 I need to to cover travel, lodging, & the deposit (due the day before surgery), but my HopeMob campaign is moving along & I am hopeful.

I really appreciate the opportunity to share my story; I’m so glad this club exists!

Amanda
Illinois
Submitted 4-21-13

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 article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.

One comment

  1. Sharina Brooks

    Hi Amanda, I also think I have endo. I am 21 but am just learning about it and hopefully soon can see a gyn. about it. I also just finished my junior year in college and am going into my senior year as a social work major. I am inspired by your story. Please contact me at sharinalbrooks@gmail.com I’d love to talk to you more. I need someone to talk to and your story really stuck out to me.

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