Sherika Wynter, Voices Of Endo
October 14, 2008.
You never forget your diagnosis date. It’s one of the most bittersweet days of your life. You finally get to let go a sigh of relief but you struggle with your next breath at the same time. You're faced with difficult decisions and very little guidance. What you thought was the end of a long journey is just the beginning of an even longer and lonely expedition. You are never ready, but you have to fight.
My cycle started off as "normal" - 5-7 days with little to no pain and 28 days to the calendar. I was 13. About a year or so into my womanhood journey, things went south. Every month, my pain increased, my flow decreased and my lack of knowledge... it stayed the same. You see, no one tells you what to expect from your menstrual cycle. Your “normal” is based on the women you're surrounded by, their knowledge and experience. It's a part of parenting that no one speaks to. It's the blind leading the blind.
The downward spiral
My ability to cope ceased around the age of 22, approximately 6 weeks prior to my emergency procedure. For first 8 years of my menstrual cycle, I knew I was out of commission for the first 24-48 hours of my cycle. Everyone in my family knew the routine. We had a system. Suddenly, that changed. I was experiencing daily pain, with no explanation. I visited the ER twice, within the first 2 weeks but was told I had everything from colitis to gas. Of course, I was unable to replicate the pain once at the hospital, making my story even more unbelievable. My parents believed me but that wasn't enough. For the next 4 weeks, I kept a pain journal, marking my body with a sharpie for every place that hurt. I was determined to figure out the source of my ailment while others thought I was going insane. My logic was: if I cannot reproduce the pain, I can at least track it.
The morning of my diagnosis, I went to my OB-GYN. It was my Hail Mary. She was on call at the hospital and her colleague saw me. Her colleague did an ultrasound, concluded I had ovarian torsion and told me to meet my OB-GYN at the hospital immediately. Upon arrival, I was examined again and was told it was a misdiagnosis, that all my symptoms and problems were caused by endometriosis. I pleaded with her to look a little further as I was mentally, physically, and emotionally exhausted from all the pain. But she was certain and I had to figure out what all this meant.
The winner of this battle
From that day forward, I learned everything I could about endometriosis. I learned my trigger foods. I tried different medications. Some worked, others were an epic fail. I specifically focused on the havoc it could wreak on my reproductive system. I wanted to be an expert and an advocate for myself. I knew that if I didn't speak up for me, this disease would kill me. Not literally, but my spirit, my drive, my mental stability. My mother and I searched the internet for a reproductive endocrinologist who valued both: wellness and fertility. Finally, we struck gold.
Upon finding my physician, we discussed my future and how we could ensure I would get my heart's desire: a child. After finally getting my cycles under control, he urged me to freeze my eggs. Insert shock factor here. At 24, who wants to speak about the possibility of infertility? Is this real life? I didn't want to think about it. But if I was going to be proactive, I needed to adhere to counsel. I finally agreed. For my 27th birthday, I froze my eggs. It was the best decision I've made thus far along my endometriosis journey. I finally felt like I won a battle in this war.
There's no right or wrong way to cope with endometriosis. It really boils down to personal preference and priority. Over the last 8.5 years, I've had 4 laparoscopic surgeries and 1 cycle of egg freezing. For some, that's plenty; for others, it's a dream. One thing is sure: we all wish we knew sooner. For me, I wish OB-GYNs and parents were more proactive. I believe every girl who is menstrual should have basic knowledge on all reproductive issues. My mom had no idea what was right or wrong and for most OB-GYNs, "bad periods" are considered normal. They are not. There is nothing normal about it. The more the idea of "normal" is engrained, the harder it is to diagnose. I was told it was "in my head" by medical professionals and most of the women I've encountered that had similar experiences.
I also wish there were more prominent support avenues. It was hard for me to find the right group of women to support me through my acceptance phase. It takes years to accept an endometriosis diagnosis. Why? Because it’s constantly changing.. As a woman grows, her priorities change, her needs change, her body changes. The support I needed at 22 is very different than the support I need approaching 31. You often feel lost, resetting your support system each step along the way.
However, I urge you to start listening to your body and start asking questions. If you feel that something is wrong or isn’t “normal”, there’s a really good chance you’re right. It’s not “in your head” because you know your body best. Don’t be scared of speaking up, be scared of not knowing what could happen if you knew.