This is a firsthand account submitted through SWHR’s Share Your Story portal, as part of SWHR’s Women’s Health Perspective series.
I was diagnosed with stage 4 endometriosis three years ago. I endured multiple trips to the emergency room before my diagnosis, only to be gaslit by doctors who said, “It’s normal to have period pain and some women have it worse than others.” I experienced severely painful periods since I started my period when I was 13 and was put on birth control soon after. I experienced such awful pain that as a teenager I would have to miss school during my period.
As I got older, I would hide in the bathroom at work, crying hunched over in pain. When I went to doctors, they suggested I put a heat compress on my abdomen and take over the counter medication. When that didn’t work, they said there was nothing more they could do and sent me home with opioids. I was told to take the opioids if over the counter medication did not help. I had a nurse who told me “I did not understand the pain scale” when I told her my pain was at 30 out of 10. She didn’t know I was working in health care and knew very well how the scale is used for pain. The nurse looked at me like I was crazy and there was no way I could possibly be in that much pain. During one visit to the ER, I was told my pain was likely due to my appendix rupturing, so they sent me to get a CT scan to be sure. The scan did not show any issues with my appendix. The doctor told me I had a couple large cysts on my ovaries, not to be worried, and that this was likely causing temporary pain around my cycle. The doctor told me they would clear up on their own, and they sent me home. I knew my body and I knew that something more significant was going on, but no further investigation was done.
I went through numerous scans and multiple doctors until I was referred to an endocrinologist who finally gave me an endometriosis diagnosis. My husband and I were given less than a 5% chance of conceiving, so we had to go straight into using in vitro fertilization (IVF). Before we could start, I had to have surgery to remove the masses that covered both ovaries and was told I may lose one of my ovaries due to how big my masses were. The endometriosis was in both my fallopian tubes and in my uterus as well. We did three rounds of IVF (in one round using donor eggs due to my endometriosis), and each of the attempts failed. In November of 2023, my pain was back and after seeing my doctor, I was told my masses were back, that my ovaries were adhered to one another and it was so bad that I needed to have a total hysterectomy. I am 39 and now in menopause unable to take hormonal replacement medication and having to grieve that I will never be able to have kids.