I’ve had pelvic pain since before hitting puberty. I was one of the girls that got their period early in life, I had just turned 12 and started the 6th grade. At my school, 6th grade was still elementary. I had a male teacher and I remember being so embarrassed and ashamed, but I was having severe pain and very irregular periods. I was constantly bleeding through my clothes and had to have extras or be brought extras. I would have to leave class and sit in the hallway because my pain was so severe and I didn’t know what was happening to me. Periods were not super normalized in my home so I was embarrassed to bring it up to my parents and kept living with pain thinking it was normal, that all the girls feel like this.
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I tried many different birth controls to help, but nothing did. If anything they made everything worse, at one point the estrogen BC I was on made me extremely depressed and suicidal and I was having panic attacks daily, but I was told that is what I needed to be on to control my periods and my pain (even though it didn’t). Finally in college I went to a specialist OBGYN and he offered to do laparoscopic surgery to confirm and endo diagnosis. I almost talked myself out of the surgery because I was convinced it was all in my head and I was going under the knife for nothing, they’d find nothing, and everyone who told me my pain was normal would be right. I had surgery on my 20th birthday. My surgeon confirmed that they did find endo and multiple cysts. My left fallopian tube, ovary, and bowels were adhered to my abdominal wall. I was told I had stage 1/borderline stage 2 endo. Out of the 10 surgeries I’ve had, that surgery was the most difficult recovery. I was told I’d be back to my usual active in a few days, however I couldn’t even walk on my own for 2 weeks. I needed help doing everything: walking, sitting up, laying down, wiping myself, getting dressed, you name it. My husband (boyfriend at the time) was my caretaker (granted we were in our second year of college together at 19 and 20 years old) and was caring for me between classes and work, I’m forever grateful for him. Ive had episodes of menstrual hemorrhaging and ovarian cysts bursting that had landed me in the hospital but there is little treatment available, especially when they find out I have endo.
I have since been diagnosed with Ehlers Danlos syndrome, PCOS, and other comorbid conditions that can be related to endo. It was extremely validating to have a definitive diagnosis. I have learned so much about endo and my body since (especially from Emma). Even though I am stage 1/2 in my endometriosis disease, I’ve learned that the stages or amount of endo don’t necessarily correlate to the amount of pain or symptoms you experience, and that was also so validating to learn. Anyone with endo, regardless the amount of stage, had endo and has pain, and that is valid. I still have pelvic pain, not just on my period but all month. It has gotten to the point that I was using left over pain medication from previous surgeries, and I was rationing it to use on my period. My GYNs don’t have good management options. I have irregulars periods but when I do get them, I’m bed bound and can’t cope. I’m terrified to do endo surgery again, I wonder if it’s even worth it? I often think about my fertility and how that has been impacted. There’s so many unknowns with endo, we need more research and we need more options <3