What are your endometriosis symptoms like?
I have always had very painful periods. Some are worse than others. The cramps feel as though someone is squeezing and twisting my insides. The pain radiates across my back, abdomen, pelvis and down to my ankles. Nausea often accompanies this, and can lead to uncontrolled vomiting. My periods are terribly heavy – maximum protection pads are my only option. Since giving birth, I now experience throbbing cervical and back pain daily. I have had several trips to the ER for pain/vomiting management.
What was your journey to diagnosis like?
My mother took me to several doctors as a teenager, concerned that my period pain wasn’t normal. She fought to get me on birth control to help manage the pain. Every doctor I saw just told me that the pain was normal. Birth control helped slightly, but it wasn’t something I wanted to take forever. I had never heard of endometriosis until I was finally referred to an OBGYN in my early 30’s after consecutive hospital visits for my periods. I was diagnosed with adenomyosis and told I likely had endometriosis as well. At the time I was told it could only be diagnosed through a hysterectomy which was not an option. I was given a prescription to decrease blood flow and told to alternate Advil and Tylenol for the pain. Years later, as I struggled with infertility, I underwent laparoscopic surgery to have a blocked Fallopian tube removed. I asked the surgeon to verify if I had endometriosis. He had to also remove a damaged ovary and said he wasn’t able to confirm the diagnosis. It wasn’t until my C-section at 42 years old that my diagnosis was confirmed.
What has your experience with treatment for endometriosis been?
It took decades for me to find a doctor that would listen to me about the negative impacts my periods were having on my life. I have only ever been offered various pain prescriptions. Hospital visits offered the most (albeit temporary) relief through a combination of morphine and Gravol IV drips. Though, I’ve been harshly judged during some of these visits, and have been met with disbelief. One nurse even referred to my condition as ‘hysteria’. Unfortunately, prescribed opioids have been the most effective for my pain, though I try to avoid them if possible. Gravol and Zofran have been most effective for my nausea. Doctors have always told me it will hopefully get better after children. This was not the case. For the first time in my life, I have been prescribed a treatment specifically for endo. I haven’t started it yet, but am hopeful. It only took 33 years.
How does endometriosis affect your day-to-day life?
I have always missed school or work due to my period. I’ve been put on attendance management programs with my employer due to missed work. I have often attended work with illnesses because I need to save my sick days for my period days. I’ve been interrogated due to missing days around holidays or weekends, even after providing proof I was in the hospital or having a doctor’s note. I plan events around my cycle. My entire social circle has witnessed me at my worst. During my bad cycles I can barely get out of bed due to pain, exhaustion and weakness.