Me and Endometriosis
Me and Endometriosis
Hello, everyone. My name is Jazmin.
Family history of endometriosis
I’ve had painful cramps ever since I got my first period, at age 10 or 11. I inherited this disease from my grandmother, whom I was very close to. She battled endometriosis, and ended up having a full hysterectomy. My sister and I would go to our grandparents house every day after school. Our education was very important to them, so everyday (like clock work) my sis and I were to start our homework right after school was over. Whenever I got my period, my grandma would change that rule, and pretty much gave me permission to do whatever I wanted while my sister hit the books. My grandma would then take care of me. She later opened up to me about her struggles with a disease called Endometriosis. She would tell me, “You remind me of myself when I was your age. My periods would send me to the floor. So, I had my ovaries taken out because I couldn’t take it anymore.” That was the first time I heard of endometriosis.
Fast forward a few years. I was never any good at school because I was always absent. Either absent or leaving early. I went to a catholic school. I went home early every month, like clockwork. I even got sick in class, multiple times it was so embarrassing. Endometriosis can be such an embarrassing disease to live with. The attacks come on at any time. Endo doesn’t care if you’re in your 6th grade class. One day, while I was in the office waiting for my mom to come get me, my favorite priest came up to me. He was obviously very concerned because of all the times I’d gone home sick, then be gone for the rest of the week. I told him it was, “stomach flu”. I didn’t really know what to say. I didn’t feel like telling him I was having yet another unbearable period. So, he did the sign of the trinity and prayed for me. It was 1999, but I remember that like it was yesterday.
The burden of endometriosis
It’s taken me about 7-9 years to figure out what’s wrong. Until now I have always been ignored (by the medical community) whenever I brought up my pain. I was passed around from specialty to specialty, all while in my twenties. I didn’t enjoy my twenties at all, because I was sick all the time.
I would cancel on my friends and family. All the time. Just because I was in so much pain. I got to the point where I stopped making plans.
Labeling and loss of hope
My doctors diagnosed me with IBS, fibromyalgia, and migraines. In 2014 I had endoscopic surgery and a colonoscopy. I even did a gastric emptying test (a long test!) with no results. “Everything’s fine”, was the answer (always). That led me to think my pain was all in my head. I had these “childbirth cramps” during every cycle and sometimes in between and I had nothing to show for it. No diagnosis. No treatment. No hope. I was devastated and spiraled into an even deeper depression.
I have an amazing gynecologist who is very compassionate towards me. She treats me like her own family member. Care like that goes a long way when you’re suffering. She is the best doctor I’ve ever had and I’ve only known her for 7 months. She’s my outpatient doctor as well as my surgeon. She did my laparoscopy too. For those of you out there who have bad doctors, please don’t give up on finding “Dr. Right”. I have been there, and gave up many times. Good doctors are out there. I never thought I’d meet the doctor I have, because in the past I only had the worst.
I had my diagnostic laparoscopy on 11/11/20. Lo and behold, Endometriosis was indeed found. She found it in my ovaries and Fallopian tubes, along with a huge ovarian cyst. When I woke up from my surgery, I had mixed emotions. When they told me, “You have endometriosis” I actually felt a little relieved. Relieved to know I now have a NAME for what’s put me through so much misery and heartache....and it’s been years, as I’m now in my early thirties. Now the healing begins. I have met some of the nicest, most caring women on my journey. I am a part of a community of warriors.
Importance of sharing these stories
It’s important for me to share my story. I’m a natural advocate, and I feel drawn to get my story heard as well as hear from others. This disease is real, and no one should have to feel like people don’t believe them when they are hunched over in excruciating pain. We deserve better. Women deserve better. We need to spread awareness so that the next generation of women can live better with this disease.
Please don’t give up hope. Thank you for reading my story.
Have you ever experienced a "weird" symptom and wondered if it was endo related?