"Advocate for Yourself": Bella's Story
By Bella Mitchell
Hello I'm Bella, and in October I had a laparoscopy to diagnose, and remove endometriosis. It takes on average 7 years (for many people much longer) to be diagnosed with endometriosis, which means living with pain and debilitating symptoms which can impact every aspect of our lives.
I’ve always had very painful periods that would cause me to have to stay home from school, and would leave me curled up crying. I also suffered from back pain, bloating, diarrhoea, and fatigue. My period became irregular in my late teens then stopped completely, and I was diagnosed with PCOS. Many other GPs have disputed this, and I now have no signs or clinical symptoms of PCOS. I changed my lifestyle, and my periods came back with a vengeance. As I got older my symptoms worsened, with more painful periods, heavy bleeding, shooting vulva and rectal pain, painful bowel moments, and severe bloating. I went to a womens health GP who told me that periods can change during your 20’s, and she didn’t think anything was wrong but we would monitor it. From 2018 my periods got worse & worse; becoming extremely heavy, severely painful, with nausea causing me to dry retch, and new bowel and bladder symptoms including rectal bleeding, abdominal pain after urinating, and urinary frequency.
In 2019 I was hospitalized for acute left sided abdominal pain associated with vaginal bleeding and vomiting. I needed strong opioids and was diagnosed with a ruptured cyst (no evidence of this on ultrasound). I didn’t know then how many more times I’d have to sit in an emergency department before I'd know what was going on. After two hospital admissions, and more presentations to emergency with severe pain (during, and in- between periods), and again being diagnosed with cyst accidents, I was referred to the public gynaecology clinic. When I finally had my appointment the doctor said they didn’t know what was wrong, prescribed me the pill and told me it probably wasn’t endometriosis. I was having a lot of time off work for pain, had to leave work to go to the emergency department, and had developed chronic pelvic pain. I had been researching my symptoms, and begun reading about endometriosis, following several instagrams for accurate information and support. Some friends and colleagues I talked to with endometriosis told me my symptoms sounded like endo. I mentioned this to my GP who again, dismissed it, but did refer me to private gynaecologist and endometriosis specialist. That first appointment was so overwhelming in the validating, support, education, and kindness I received that I couldn’t stop crying as the gynaecologist said she could say almost certainty that I had endometriosis. My ultrasounds had shown reduced movement, my symptoms were typical, and my bulky pelvic wall muscles all indicated endometriosis.
In October I had my laparoscopy and excision of moderate endometriosis. It was extensively on my left and right pelvic wall, on my left ovary, left ureter, pouch of douglass, peritoneum, and my right Fallopian tube had been adhered to the tissue lining my pelvic cavity. I went into surgery somewhat naive for a nurse, I couldn’t move without crying, my mum had to help put my underwear on, I couldn’t walk properly, and the pain was way worse than I expected. After a post-op complication and a few extra nights in hospital, I’m recovering well and I feel so validated to finally have a diagnosis, and a hope after surgery to be pain-free. It was quite surreal, and shocking to hear that it was endometriosis, because after being dismissed by so many doctors, I thought I must have been making it up in my head. I decided to share my surgery and diagnosis on Instagram, and to be very open with the people in my life; family, friends, colleagues, because a lot of people don’t realise the impact a chronic illness has on your life, or how debilitating endometriosis can be. For a lot of us with the disease it’s chronic pain, severe bloating and gastrointestinal symptoms, fatigue, iron infusions and pain medications, blood tests, physio, expensive specialist appointments, and frequent hospital visits, ultrasounds, or multiple surgeries. It’s not just bad periods, it’s not a problem with the uterus itself, and no having a baby doesn’t cure it.
It’s been 11 years since I got my first period, and three years since I started asking for answers. People with endometriosis need more research, more funding, and better training of doctors to be able to identify, diagnose, refer, and treat people suffering with endometriosis. Advocate for yourself, don’t let doctors dismiss your pain, spread awareness, and research. Theres a lot of misinformation out there, and the hysteria-woman myth is still alive and strong. To quote fellow endo-warrior Alexa Chung “Sorry if you have it, thrilled if you don’t, and grateful if you’re a supportive partner, friend, or family member to someone suffering with this invisible nightmare”.
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