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Read time:3 min
Ruby Douglas was 14 when invisible pain became her new normal. At a time when her world was supposed to feel big with opportunity, it became very small, very quickly. Now at age 21, Ruby recounts her childhood with endometriosis and how she’s helping other young people like her.
At Jean Hailes, we share women’s stories to raise awareness, drive change and help others feel less alone. This is Ruby’s story. We acknowledge that every experience is different.
I consider myself one of the ‘lucky ones’ when it comes to a diagnosis delay. My journey to diagnosis took one year. Many others wait several years and are often left dismissed or misdiagnosed along the way.
After a misdiagnosis of polycystic ovarian syndrome (PCOS), I eventually got a referral to an amazing gynaecologist. Within minutes of that first consult, it was almost certain I would be a part of the one in 7 people diagnosed with endometriosis.
At the time, and given my circumstances, keyhole surgery – called a laparoscopy – was recommended as the most effective and efficient way to diagnose endometriosis and assess the extent of the disease.
I woke up from a diagnostic laparoscopy to a life-changing double diagnosis: severe endometriosis and severe adenomyosis. My surgeon removed 2 palms’ worth of endometriosis from within and outside my pelvis.
How is endometriosis diagnosed today?
The way endometriosis is diagnosed has changed in recent years, due to advances in technology and research. In the past, keyhole surgery – called a laparoscopy – was considered the gold standard and only way to diagnose endometriosis. Nowadays, imaging technology, such as ultrasound, is the recommended way to see if you have endometriosis.
Across the past 8 years, I’ve had 8 laparoscopies and countless other procedures in an attempt to outrun pain that never truly leaves. Endometriosis affected me every single day. I missed school because I couldn’t sit upright. I changed period products every 30 minutes and layered bike shorts under my uniform to avoid bleeding through. While my peers were living up their teenage years, I was learning medical terminology no 14-year-old should know: chronic illness, hormonal suppression, surgery, menopause, infertility.
Medication trial and error was my normal. At 15, after another laparoscopy to remove further diseased tissue, I was placed into medically induced menopause with medicine, in an effort to ease my symptoms. The next 3 years blurred into emergency visits, hospital admissions, operating rooms, pelvic rehab, losing myself mentally, and trying to educate myself and my support system about diseases with no known cause and no cure.
I was told there was a very high chance the ovary would need removal. IVF and egg freezing weren’t presented as hypotheticals. They were presented as my future. That was the hardest pill I’ve ever swallowed.
During that time, I opted for a hormonal intrauterine device (IUD). It’s a type of contraception that can also help some people with endometriosis. The symptom relief was unlike anything else. For the first time, I felt like I regained a portion of my life. It hasn’t been smooth – I’ve had multiple IUDs fall out of place – but I’ve continued to get them replaced as the relief is worth it.
Things stabilised for a while, until my left ovary began causing severe issues. On 4 separate occasions, it adhered to my pelvic side wall, each time sticking itself more aggressively. At 19, my focus shifted from managing pain to preparing for organ loss. I was told there was a very high chance the ovary would need removal. IVF and egg freezing weren’t presented as hypotheticals. They were presented as my future. That was the hardest pill I’ve ever swallowed.
For someone of that age, one round of IVF should suffice. But I endured 3 separate rounds of IVF to freeze eggs, just to store an adequate number of eggs. The freezing cycles were devastating – it became painfully clear my left ovary was failing. I experienced severe complications from the fertility treatments and couldn’t push myself to do anymore. Afterward, pain began to consume my life again. Multiple MRIs and ultrasounds showed nothing, yet the pain was unbearable.
During my most recent laparoscopy, the scans were proven wrong once again. My left ovary was strangled by adhesions and fused to the pelvic wall, my left fallopian tube was blocked and an endometriosis-related cyst was found growing on the ovary, all of which had to be removed.
Waking up at 21 to the news that I had lost an organ to this disease was devastating. Even though I was stitched back together, I felt I would never be quite whole again.
After the emotional rollercoaster, I have since shifted my focus to protecting my remaining ovary. There are still lots of hard days filled with fatigue, pain and unpredictability, but I feel more ‘normal’ since surgery last year.
I truly believe a strong support system is vital when living with chronic illness. I was 14 and had no one my age to relate to. I couldn’t find stories of young women going through what I was. So, I became that change. I created my own platform to build a community of patients supporting patients – something I have never regretted.
Chronic illness can be incredibly isolating, especially when it’s invisible, you’re young, and you’re still learning what’s normal. You have to become your own advocate. You know your body better than anyone else. Seek second opinions. Ask questions. Request pathology and copies of scans and ask your doctor to go through them with you. Ease your anxiety with knowledge.
If sharing my story helps even one person feel less alone, ask questions sooner, or feel validated in their symptoms, then stepping out of my comfort zone is worth it.
More information and support
Learn more about endometriosis, including the symptoms and treatment options. You can also find support through the Endometriosis Australia support group networks.
