Share Your Story: Amanda

Amanda learned she had Endometriosis when she was 27.  Now 33 years old, she shares her story with us.

Amanda’s Journey:   In mid 2011 I started to have pain in my lumbar area, down my butt and thighs. (Sciatica). I thought it was a pinched nerve cause I broke my back in a car accident in 2007 had a fusion and found a lot of issues with the spine. Every period I had the symptoms, the pain got worse. Seven months went by. My primary didn’t listen to me thought I was exaggerating. Because I am young I should be fine. On the 7th month, the pain got really bad. Constant throbbing and sharp radiating nerve pain from my butt to my toes. I could not sleep and was pacing all night in agony. I was still working and side note I didn’t call out once and I was a cashier at a gas station. So I had to be on my feet 8-10 hrs a day. Strong chicca. I was getting ready for work and I kept laying down and trying. My stomach was so swollen and I realized I haven’t urinated for 2 days. It took my mom and husband to convince me to go to the ER. They removed 700cc of urine. They found a blot clot in my spinal cord and a mass. Lumbar area and clot was in the thoracic area. Was in the ICU for 3 weeks. I have permanent damage for not listening to my body. The nerves never recovered for being crushed. I have neuropathy pain all the time. I did hormone therapy for 6 months after first surgery but the mass grew back again and this time I lost control of my urine and bowels. I had to have surgery again. This time I learned more about my condition. UCSD hospital did a case study about me. Since the cancer is rare and even more rare in the lumbar spine. I am currently getting Lupron injections to control the mass from growing. This is my 4th round of Lupron. I don’t have the bad pain but I feel it more and more. My oncologist did not want to do radiation because he has never done it on this type of tissue and in this area. So I am stuck with having a wall of tissue stuck in the nerves and possibly grow and grow. So I have been truly scared to go paralyzed. My life has changed, I am not very active like I use to be. I can’t walk long or even sit. I can’t lift anything. I use to run upstairs not now it takes me forever because lifting my upper body is to heavy for my legs. I am very weak. I use to cry a lot. But now I am getting stronger and not let it control me anymore. It’s hard.

Words of Advice: Keep being positive, dont’ give up.

If you would like to contact Amanda, please feel free to e-mail her.

I want to send a special Thank You out to Amanda for being brave enough to share her journey with us today!  Best of luck with your ongoing treatment!    ❤ Yours, Lisa.

paper with "Share your Story" written on it

And if YOU would like to share your story, I would love to share it.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.

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