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Endometriosis Awareness Month 2021

Hey Herd, Allie here. We are three weeks into Endometriosis Awareness Month, something very near and dear to my heart. Six months ago, after about 18 years of misdiagnosis, I had an exploratory laparoscopy which turned into excision surgery and, an official Endo diagnosis. I thought that once I had a diagnosis, things would be smooth sailing. The surgery would fix everything, or we would find a treatment plan that took away my pain. While my chronic pelvic and low back pain is merely a dull ache now, no longer keeping me up at night, my period pain, and ovulation pain have come back with vengeance. My GI related issues and symptoms are also worse. Over the 4 weeks of my cycle, I have maybe one week to maybe a week and a half where I don’t have constant bloating and GI upset. The bloating isn’t painful per say, just uncomfortable and tiring. I have struggled with body image for most of me life, and the constant inflammation of my body and belly is less than helpful. Accepting that I will battle this disease for the rest of my life has been challenging. We are 6 months from when I thought I would find relief, and still do not have a plan.

Endo impacts 1 in 10 people assigned female at birth, but so much of this disease remains a mystery. Every Endo Warrior’s path with this disease is different. Furthermore, most with endo are told to just take medication for their pain and brushed off by medical professionals. Treated like they are just weak, with a low pain tolerance. Because of medical gaslighting and misinformation it takes, on average, SEVEN and A HALF YEARS for someone to get a diagnosis. Did you know that it isn’t normal to be in so much pain or so sick from your period that you have to miss work, school or normal activities? I didn’t. That was my normal and that was made possible by so much miss information surrounding women’s health. I recently started researching more and more about the disease. I joined Facebook groups, and read everything I could find. I am no longer willing to accept a doctor telling me that the challenges I face are fine. Endo is listed on the list of the top 20 most painful diseases. Learning that fact felt so incredibly validating for me.

Here is a quick list of the most common symptoms of Endometriosis. The list comes from Nancy's Nook, a great resource for learning more about the disease.

  • Severe pain during menstruation 
  • Pelvic or abdominal pain not associated with menses
  • Low back and/or leg pain
  • Pain with sex 
  • Painful bowel movements 
  • Stomach problems including nausea, bloating, diarrhea and/or constipation 
  • Fatigue 
  • Infertility

The last 18 years of my endo journey have had a significant impact on my mental health. I’m scared to see new doctors for fear of being brushed off as weak, or pushed to try a treatment that I am not comfortable with. I don’t even recognize my body anymore because the GI issues and bloat make it change constantly. And I am tired. Tired because endo causes fatigue, tired of it hurting, and tired of people telling me X,Y,Z will cure my incurable illness. A recent study showed that 50% of women with Endo have contemplated suicide. That number is heartbreaking to me, but frankly, I get it. I am incredibly fortunate to have a great support system. They may not understand exactly what I am going through, and sometimes offer up less than helpful advice, but they care, and on days when I am tired of fighting, they keep me going.

Generally, when I write something for Herd, I want to keep it light, but honestly, as any Endo Warrior can tell you, this journey is heavy. Today I wanted to honor the heaviness, the challenge and the struggle. If you are struggling, we are here, your Herd is here! Forest and I are always here to talk. Somedays it is heavy, but always remember: there are fellow zebras here ready to listen and help carry the burden.