What are your endometriosis symptoms like?
When I first started getting periods at the age of thirteen, my symptoms consisted of exceptionally heavy bleeding and clotting; I bled for my entire eighth-grade year and often felt faint and went into shock from the amount of blood loss. On top of this, severe, debilitating cramping occurred and this continued throughout high school; I was placed on hormonal contraceptive (birth control) and looking back, I suppose this helped, but it always bothered me that the doctor ‘suspected’ endometriosis, and even knowing my mother had it, never explored it further. Fast forward into my twenties, my periods were still heavy and my IBS symptoms were often misdiagnosed as possible IBD, Crohn’s, Celiac, etc… stabbing pains, horrible times in the bathroom weekly, sometimes every day, gastral problems, blood coming out of places it shouldn’t have come out of, and many more painful and embarrassing symptoms. Then, I stopped getting periods altogether. At first, I thought this was a blessing, but in 2020 I experienced a cyst rupture, followed by severe ‘endo belly’ swelling that lasted months. The pain can be stabs, aches, thudding, pressure, pulling, tearing-sensation and nerve-related (mine is often in my sciatic nerve) and overall just awful. Along with this, the fatigue is unlike anything I’ve ever felt before — it isn’t like being tired — it’s like being hit by a truck, or feeling like you’ve just run a marathon when all you did was get out of bed. Fatigue, for me, leads to shortness of breath, exhaustion, nausea, and anxiety.
What was your journey to diagnosis like?
At thirteen I was told I had suspected endometriosis and took oral contraceptives to control my pain and abnormal bleeding into my twenties. Upon stopping birth control at 24, my periods were erratic, irregular, and heavier than I was used to–similar to how they were when I was thirteen– they were unpredictable and painful. I missed a lot of work and school and took many visits to the ER fearing that I was having a miscarriage or something along the lines of a pelvic emergency. At 26 I began seeing a new OB-GYN who was a bit more sympathetic to what I’d been going through; at the time, my hormones were out of control and I had hypothalamic amenorrhea (loss of period). In 2020, at the age of 27, I screamed one night as a sharp and sudden pain attacked my left side, followed by bleeding. I wasn’t experiencing periods at the time, at least not regularly, and new that an ER visit was in order after I went to work the next day and watched my stomach swell. I had a ruptured cyst, and the endo belly only continued to swell as the month went by. My IBS symptoms were out of control, and it was then that I decided to try a gluten-free and vegan diet; will never look back, my bowel-related endo issues have completely disappeared, so I am very proud of myself for taking that step. However, a few months ago I felt a ‘flare up’ coming; I started experiencing night sweats (I am always cold and was waking up completely drenched). I felt pain reoccurring in the area where the rupture had occurred, and very quickly became fatigued and sick after doing simple tasks, such as going to work, or going for a walk. The pain returned full-force, and although the swelling isn’t as severe, the persistence of the flare-up has been debilitating; it seems to have decided to attack my sciatic nerve, along with my entire left side of my pelvis and back. I was scheduled for a laparoscopy, finally, after 15 years, but it was canceled due to the pandemic. Now, I am laid off from my job, waiting for a surgery that will hopefully provide some answers, and taking this all day-by-day. I worry about my health, my fertility, and my future with this illness, but I try to remain optimistic!