In Extreme Pain & I Couldn't Pee! So I Pushed for THIS - Crystal | Rare Sarcoma | The Patient Story

Crystal was 33 when she suddenly found herself unable to urinate and in excruciating pain. Her husband rushed her to the emergency room where 800ml of urine was drained from her bladder. She was later misdiagnosed with liposarcoma and underwent painful chemotherapy treatments that damaged her bladder. Eventually, a second opinion revealed she had MPNST sarcoma, linked to her underlying NF1 condition. Her surgery involved a urostomy, colostomy, bladder and rectum removal, and partial hysterectomy. She was alone in another state recovering with two ostomy bags and emotional trauma, but she never stopped advocating for herself.

In this cancer vlog, Crystal shares her experience from misdiagnosis to massive surgery, how she pushed for proper testing, and what it took to find a sarcoma specialist who finally understood her rare condition. She opens up about being let down by doctors, searching for support, and how she found strength in her community and online research. Her story is a powerful reminder to trust your instincts, ask questions, and never settle when it comes to your health.

Thank you, Crystal, for sharing your story to help others.

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Chapters:
0:00 Meet Crystal
0:22 I Was Originally Misdiagnosed
2:44 What Happend Next
5:20 A Second Opinion Changed Everything
7:12 Finding A Sepcialist Was Hard
8:43 Why My Second Opinion Felt More Comfortable
10:03 The Day Of Surgery
11:35 How I’m Navigating My Life With Two Ostomies
13:01 Where I Find Support With A Rare Diagnosis
13:53 My Advice To Others

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I Pushed for a CT Scan Because I Couldn't Pee! - Crystal | Rare Sarcoma | The Patient Story
   • In Extreme Pain & I Couldn't Pee! So I Pus...