The Symptoms I Missed

When I was in high school I would wake up in the middle of the night feeling like I was being stabbed in the side and back. I would get up, almost throw up because I was so nauseous, and make myself tea. I couldn’t stand or sit up straight because of the pain, but I just thought it was a normal part of being a woman. I prayed and drank my tea, then I went back to bed. I didn’t know, yet, what a rupturing cyst felt like.

When I was trying to be a Dance minor in college I suddenly stopped being able to do ab workouts. I told my instructors that I felt like something was pulling inside. It would hurt a bit, then I was overcome with dizziness and nausea. I stopped pursuing the minor because I was told I must be doing the exercises incorrectly. I didn’t know, yet, that my organs were stuck together.

When I was in voice lessons for my Major, I felt breathless discomfort when I tried to breathe from my diaphragm. I was told to expand my ribcage. I didn’t know, yet, that my diaphragm was covered in endometriosis.

Before I was diagnosed with Endometriosis in February of 2014, there were so many signs and symptoms I missed. I was told I was being dramatic, or weak when I mentioned the symptoms to other people. Sometimes I chose not to mention them at all because they happened so often that I just assumed nothing was actually wrong. By listing the symptoms I missed below, I hope someone else will recognize what they are going through and be able to seek treatment.

Symptoms (And when they first appeared)

Menstrual

-Painful periods (13)

-Diarrhea on periods (13)

-Nausea on periods (15)

-Heavy periods, with clots larger than quarters (16)

-Severe cramping (16)

-Stabbing Feeling (16)

-Moderate pain with bowel movements on periods (16)

-Diarrhea while PMSing and on periods (18)

-Severe pain with bowel movements on periods (18)

-Heavy periods, with clots up to kiwi size (19)

-Irregular Ovulation (23)

-Feeling disoriented while PMSing (23)

-Very irregular periods (7 in 2018, 6 in 2019)

Not related to Menstruation

-Severe pain in abdomen accompanied by nausea (15)

-Chronic lower back pain (16)

-Headaches (16)

-Constant nausea (18)

-Severe pain in abdomen accompanied by nausea (diagnosed as rupturing ovarian cysts) (18)

-Breathlessness and discomfort with deep breaths (18)

-Difficulty supporting singing with enough air (18)

-Chronic pain in: lower back, pelvis, hips, and thighs (19)

-Moderate pain with bowel movements outside of periods (18)

-Diarrhea while PMSing and on periods (18)

-Painful pulling deep in abdomen while working out plus nausea (18)

-Brain fog (18)

-Migraines (triggered by the Jolessa I took to try to control my Endo — they’re still here, more than 6 years after stopping that medication) (20)

-Depression, especially when taking Norethindrone (23)

-Hair growth on face (again courtesy of Norethindrone) (23)

So — there it is. A non-exhaustive list of my Endo symptoms. If you have a bunch of these, go to a (good) GYN. Don’t take Lupron or Orlissa. They don’t actually treat Endo, and they have terrible side effects. (If ACOG could please recognize this and stop recommending them as a treatment, that would be lovely.)

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Stephanie is a Composer, Conductor, Soprano, and Activist currently living in Los Angeles, CA. Follow her on Twitter @StephSWilkinson.

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Stephanie Streseman Wilkinson

Stephanie Streseman Wilkinson

Stephanie is a Composer, Conductor, Soprano, and Activist currently living in Los Angeles, CA. Follow her on Twitter @StephSWilkinson.

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