“You don’t even realize how strong you are, until the moment in which your only option is to be strong.” (Bob Marley)
My journey with endometriosis began at the age of 12 when my menstrual cycle commenced. I often wondered if pain was an inevitable part of menstruation… it seemed to be my norm. My periods were accompanied by heavy bleeding lasting between 5 to 7 days. The most challenging time was the week leading up to my period. I would experience excruciating pain, making it difficult to stand, with discomfort in my ovaries and back, accompanied by loose stools and constant leg numbness.
When the pain became unbearable, I would faint, often in public places, leading to moments of unconsciousness. At home, I relied on hot water bottles to alleviate the pain. Initially, my family would panic and call for medical assistance, but I was repeatedly told that everything was normal, advised to take calcium supplements. Thus, I grew up believing this was just how things were.
The first surgery
In 2004, at 16, I underwent my first surgery for a serious cyst that didn’t respond to contraceptives. Due to my epilepsy, the treatments didn’t align well, resulting in a partial ovary removal, diminishing my ovarian reserve.
After nine years, my epilepsy treatment was successfully completed. However, my gynecological visits still revolved around contraceptive pain management, supplemented with anti-inflammatory drugs and painkillers, which eventually led to gastric issues.
Recently, the pain intensified, disrupting my entire menstrual cycle. Seeking relief, I underwent surgery in 2015, followed by another a year later, both revealing severe endometriosis. Despite treatments, the pain persisted, leading to a profound peritoneal endometriosis diagnosis, prompting menopause induction with Diphereline injections. Despite the side effects, the rectal pain persisted.
The endometriosis diagnosis
Despite experiencing all the symptoms associated with this condition, my diagnosis came late, following surgery in 2015 (bilateral ovarian endometriosis and adhesions). Post-operation, I received the disheartening news: „Unfortunately, it’s endometriosis. Start having children.” Pathological anatomy confirmed the disease: endometriosis.
A year later, another surgery became necessary: ovarian endometriosis, pelvic endometriosis, and numerous adhesions. Shocked by the recurrence in just a few months, I found myself at a crossroads. Despite the daunting side effects, I agreed to a 6-month treatment with Diphereline injections to induce menopause. I experienced hot flashes, nausea, headaches, and occasional insomnia, alongside persistent rectal pain. Despite being in ovarian pause, the agony persisted, leading me to believe it was a panic attack or residual pain post-surgery.
A mere 4 months post-surgery, a subsequent doctor’s appointment and MRI confirmed a diagnosis of 3rd-4th stage profound peritoneal endometriosis. Fueled by a sense of rebellion, I delved into research about this chronic disease. I realized that with a proper medical history, my symptoms could have warranted an earlier diagnosis. However, I was met with reproach, compounding my demoralization.
Choosing to Share My Story
Discovering support groups on social media, I realized I was not alone in battling this insidious disease. Each woman had her own harrowing tale of advanced endometriosis and complicated surgeries. I decided to share my story publicly, driven by the need for change and awareness. Despite medical advancements, endometriosis remains obscure to many, its debilitating effects often overlooked.
Looking Ahead
As I navigate life with endometriosis, I strive to embrace it while pursuing motherhood. The uncertainty looms large—how many more surgeries lie ahead? Will I fulfill my dream of becoming a mother? These questions remain unanswered as endometriosis defies predictability. However, I am determined to emerge stronger than ever.
Loredana Mihai, 29 years old
Bucharest, Romania