I am wrapping this blog post up with caution tape. This is my no-filter, true story, leave it all out there, journey with my menstrual cycle. My period. Devil-ish Aunt Flow. More specifically, my journey and walk with endometriosis. I am not a scientist or a medical expert, but I want to tell my story in hopes that if one reader relates to what I write you’ll know that you’re not alone. The first week of March is endometriosis awareness week, and I want to help bring awareness to women who struggle but may not realize there are options to help.
Caution tape is up but all are welcome.
The biggest challenge God has given me began when I was a mere freshman in high school. I had only had my period for about a year, so I was still navigating those trenches. I had no idea what was normal, and let’s be honest, at 14 I wasn’t really wanting to share with anyone what was going on. I knew my mom had heavy periods, it led her to getting a hysterectomy in her 30s. All I knew is that everyone has different cycles. Well, I had a “cycle” (I laugh at that word now) that went on for 3 months. I had grown accustomed to visiting the bathrooms frequently to change out my pad. I was constantly worried I had bled through everything. It all came crashing down one morning after my first period biology class. I had been sitting on one of those glorious metal stools knowing full well that when I stood up I’d have to race to the bathroom because there would be that gush (hey—I put up the caution tape for a reason). Sure enough, I stood up and mad dashed to the bathroom hoping to make it. I didn’t. I sat on the toilet looking at the mess and just cried. I felt so defeated and embarrassed. I called my mom and asked her to come get me so I could be at home. She picked me up, got me settled, and headed back to work. While I was home I felt exhausted, and when I made my way into the kitchen, I collapsed. Not the unconscious collapse, but the legs give out and sudden rush of no energy. I caught myself on the island and held on to it for a few minutes while my brain caught up to what happened. I was so confused and a little scared but decided to go lay on the couch until everyone got home for the day. That evening I told my parents what had happened and they both agreed it was time to go in.
After a quick exam, the doctor decided to do some blood work to make sure everything was okay. It took so many tries to find a vein. We hadn’t even made it home yet before the doctor called us. He informed us that my blood count was at 6 (it’s supposed to be anywhere from 11-15), and I needed to make my way to the hospital as soon as possible. I remember crying in the car and being scared of what that meant. I remember walking through the hospital hallways with a nurse who told me I looked like a ghost walking. I remember a doctor asking me to bite my lip and pointing out the fact that my lips stayed pale far too long after gliding my teeth over them. Most of all, I remember watching blood be pushed into my hand. 2 units of blood were required to get me back where I needed to be. All due to my period. It blows my mind when I think back to it because I went months thinking that having a long period was just a bummer, but not unusual. Months of heavy bleeding was an inconvenience, but normal. It was in the hospital that the doctor explained that it was very likely that I had endometriosis, there was only way to confirm it (surgery), but that there was no cure. We all agreed it didn’t really make sense to go on an endo hunt when all that would come out of it was a confirmation stamp on my medical record. So, he put me on birth control and sent me on my merry way.
Fast forward to my college years, 7 years on the pill had my periods a little more controlled, still heavy bleeding but no long-lasting periods. It was the week of Thanksgiving, and I found out that I needed to have my appendix removed. My OBGYN and I had been trying to pinpoint some symptoms I was experiencing and found my appendix was close to rupturing. She decided that she would wait for the general surgeon to remove my appendix and then jump in to find/remove any endo. When I woke up, I was appendix free and had the official stamp for endometriosis. She had cleared out all of the adhesions she could find and explained that if I wanted to have kids, trying as soon as possible was recommended since everything was clear. I was engaged at the time, and my husband and I had an agreement that I had to finish college before we started trying. Eighteen months later we were married, I had finished college, and we were mentally prepping for the journey of becoming parents. For 9 years I had been told it would be very difficult to get pregnant, and potentially, not possible. My doctor told me to get my body in a regular rhythm without birth control, it would take about 6 months. That was not the case, though. We got pregnant the very first month we tried. With little hope, we were given the greatest blessing. I write the following statement with an ache in my heart for the many friends who cannot relate. I have never known the sadness of a negative pregnancy test. With both my boys we got pregnant the first month we tried. I am forever grateful and know that I was incredibly blessed to be spared that walk. I have too many friends who have struggled for years with negative tests and miscarriages, and my heart truly hurts for them. My troubles were not getting pregnant, they came after.
After both boys, my cycle was all over the place to the point that birth control was futile. “Cycles” started when they wanted and ended whenever. It was mentally dragging me down a deep hole. I ended up finding a Facebook group called “Endometriosis Support Group”. Catchy name -I know! But in this group I read so many similar experiences, and for the first time I didn’t feel alone in my struggles. The group constantly referred to Nancy Nook, and after awhile I decided to finally track down this Nancy Nook. It led me to Nancy Peterson, a RN who has teamed up with an extensive research team to really uncover the mysteries of endometriosis. I began to learn so much from her and the research. I realized that I was actually incredibly lucky to have had the experience I had because so many women have these lesions growing outside of their uterus, knotting up and connecting organs, and causing so many more issues. Part of her research is compiling a list of up-to-date endo specialists all around the country. I happened to find one that was just 30 min away from me. I quickly made an appointment, met the doctor, we went over my history, and landed on having a full hysterectomy. At one time, there was belief that a hysterectomy was the cure for endometriosis. We now know that this is not always the case. For me, my biggest issue with my endo was the sporadic cycles and heavy bleeding which could be “cured” with a hysterectomy. So at 27 I had a full hysterectomy. During the procedure the doctor removed any and all legions he could find, removed my uterus and ovaries, and also discovered I had interstitial cystitis which would’ve been the cause of some chronic symptoms. Again, I found myself feeling so blessed to have discovered the FB group that led me to this doctor.
It has been 2.5 years since my surgery and I have never felt better. There is a wave of peace that flows through me when I walk past the feminine product aisle at the store. Peace I didn’t know I could feel that related to my period. 14 years of being oppressed by my cycle. Had I not had that major episode in 9th grade, I probably would’ve carried on thinking what I had was normal. Clearly, there is not a quick fix to endo or adenomyosis (heavy bleeding), but you don’t have to walk alone. If you relate to any part of what I have written, search for those Facebook groups, find the doctors who are up-to-date, and never stop advocating for yourself.
