What was the first thing that you lost because of your endometriosis?

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It is like a full-time job to deal with endometriosis. And endometriosis has significant social, public health, and economic implications. It can decrease quality of life due to severe pain, depression, anxiety, fatigue, and infertility. It can ruin plans, education, relationships, friendships, families, parties, etc. Every person in the endo community has lost things to this disease. But patients tend to keep it to themselves and stay silent about this. However, it is extremely important to talk about these implications so that society hears how detrimental this disease is to the members of society. Endometriosis is not only a health issue but a social challenge.

Please share your experience and tell the world what the first thing you lost because of endometriosis was.

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The first thing I lost was my peace and self-confidence, when I saw the weight of the girls around me and they didn’t have my problems, and when I heard that I might not be able to get pregnant, I was very upset.

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The first thing I lost was my ability to trust myself to know when my own body was hurting or needed care. For 17 YEARS, a scattering of primary doctors or nurses would say, “Oh, maybe you should get checked for endo” (when they weren’t minimizing my pain or assuming I was drug seeking), but every single OB/GYN I saw laughed or belittled my desire for a hysterectomy, said it was “normal” to experience period pain, questioned my mental health, or simply said it was too hard to diagnose. Usually a combination of the above. When I finally ended up in the hospital with level 10 pain that hadn’t responded to 3200 mg Ibuprofen and two Midol, someone finally started taking me seriously. And still I was denied a hysterectomy for nearly a year, until I saw an endo specialist who strongly suspected adenomyosis in addition to the (finally) confirmed endo. This was confirmed on pathology. My entire uterus was filled with adenomyosis, and the exterior was absolutely covered in endometriosis. I also had an adhesion of my uterus to the posterior cul-du-sac and bowel, as well as several places on my peritoneum that were excised.

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  1. Self confidence.  I was 13 years old and

     my first period started with horrific monthly pain. And doctors kept telling me the pain was normal.  But that isn’t what my body was telling me. I learned the hard way that my body is ALWAYS right!  Listen and believe in what your body tells you!

  2. Happiness.  With my period came depression and anxiety.  In the 70’s people didn’t talk about depression and anxiety like they do in 2023.  I didn’t know why I felt so bad about life and so anxious. I didn’t want to go to school or do anything I used to love. My parents ended up taking me to talk to our pastor. I didn’t know what to say because I didn’t understand what was happening to me. I was having feelings I’d never had before. It took another decade before someone said the word depression to me. And it took another decade upon the first one to seek help.
  3. My teen years.  I was so shy and then with the depression, anxiety and monthly pain I was afraid to socialize, to date, to just relax and have fun. I knew I was no longer like everyone else.
  • Cindy Liliensiek answered 4 months ago
  • last edited 4 months ago
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Comfort. I started my period at age 10. I always had such heavy, painful periods. I didn’t realize endo belly was a thing back in my youth.  It would happen to me when I was at parties/events ( eating horribly and stressed) I would just bloat up to so much I’d have to undo my pants. I would have to hide my tummy with a couch pillow over my lap or with my purse. It was so uncomfortable and I felt out of place.  The fact that my period interrupted my life while I was on it was enough to feel like something was taken away from me. I also hated standing up from sitting when I had a heavy period- TMI- but big blood clots would come out. It was horribly embarrassing.

 

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The first thing I lost due to my endometriosis would be sports. As a little girl, I was heavily involved in sports. Once my periods started, I couldn’t exercise without significant pain.

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