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.

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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.

Share Your Story: Shadoegirl19

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Shadoegirl19 was just 16 years old when she learned she had Endometriosis.  Now 48 and living in Michigan, she shares her story with us today…and uplifting encouragement.  Not only was she able to have three beautiful children prior to a hysterectomy, but she, unfortunately, was also diagnosed with inoperable Endometriosis of her spine.  However, she remains incredibly strong and supportive.

Shadoegirl19’s Journey:   At the age of 16 I lost my right ovary to Endometriosis. I had suffered from about 13 (the on set of my periods) until the day my ovary basically exploded from all the endometriomas & scarring. The surgeon had never seen anything like it (lucky me).

Back then (1980’s) girls my age didn’t have “female problems”. Every time I had pain prior to the ovary burst they told me & my parents everything from gastric issues to I was looking for attention.

After the true diagnosis I continued to have issues however, I was extremely blessed to be able to give birth to 3 healthy baby girls in between bouts. Throughout the years the problems continued to plague me and I had multiple procedures (ever heard of a Cauldocentisis?? OUCH), surgeries & treatments to try to stem the growth of the disease. I finally made the decision to have a hysterectomy when I was 30. They left my remaining ovary in to save me from having to take HRT or go into menopause so young.

Unfortunately that only lasted for 2 years before the cysts started again and I had to make the decision to have the ovary removed also. After that I went on to HRT and live awesomely pain free for about 12 years until I started to have problems with my hip & sciatica. Of course, I figured it was just my luck to end up with a bad hip after all the years of suffering with abdominal pain. It got really bad after I had a small car accident. Because the pain was so severe (radiating down my leg and causing numbness & weakness all the way to my toes) I had an MRI. When the doctors read it they realized I had a crushed disc and sent me off to a Surgeon. When I went to see him he asked me all the normal questions about my pain and symptoms, did an exam and went to look at the MRI once more.

He then came in and delivered some news I never expected….it wasn’t a crushed disc they were seeing, it was an Endometrial Mass between my spine & my sciatic nerve!! I was absolutely shocked! Worst part was that he advised surgery was not a viable option due to the proximity of the mass to my spine and how badly it was intertwined with the nerve bundle. He said he wouldn’t perform such a risky surgery because the chances of making it worse were far exceeding the chances of making it better.

So, after all these years & procedures, including my complete hysterectomy, the Endo wins again. Now I live with a pain patch and pain pills daily so I can actually walk and have some semblance of a normal life. I refuse to let this damn disease win! I have 3 awesome daughters & 2 beautiful grandchildren to spend time with and I won’t let some pain keep me from being happy! My only fear is that, since 4 of the 5 of them are girls, they will all suffer too. My daughters have each been diagnosed with PCOS and one of them confirmed Endometriosis so far. We knew to watch for it early so we’ve been treating it from early on and, obviously, it hasn’t affected my oldest since she is mom to the 2 grand babies. I pray that someday we can find a cure for this and stop the cycle of pain!

Words of Advice:  Don’t give up!! If you aren’t being heard by your doctor, find a new one! Look for someone who specializes in Endometriosis and get the treatment you deserve. This is a real issue and we shouldn’t be made to suffer for “being a girl”!

The Last Word: Thank you so much for giving us a sounding board and a place to offer support to each other! As women we need to lift each other up!!

If you wish to contact Shadoegirl19, you can email her here.

I want to send a special Thank You out to Shadoegirl19 for being brave enough to share her journey with us today!!  And I am so thankful that you spoke up about spinal endometriosis!  All I ever hear from skeptical readers is “it’s so rare, why do you scare people by posting about it?”  And you, my dear, are why.  There ARE women out there that suffer from spinal Endometriosis and they need to know they’re not alone or crazy. Thank you.  I am so grateful you were able to have three beautiful children and are a grandmother!!  I wish you luck in all of your endeavors.  I am glad that your daughter has such a wonderful EndoWarrior by her side.  ❤ Yours, Lisa.

downloadAnd if YOU would like to share your story, you can do so by clicking here.  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.