What was your journey to diagnosis like? 

I started having symptoms as soon as I got my period, at age 9. My body just felt wrong. I was more tired than everyone else, I couldn’t exercise as much, and I felt sick all the time. My period cramps were bad but not severe yet. My main symptoms were stomach problems and diarrhea. I went to a number of doctors and even asked for birth control just because I had an instinctual feeling it was related to my period. Instead, I ended up seeing a gastroenterologist and multiple doctors who blamed it on anxiety.

I dealt with these worsening symptoms through high school and my undergrad. I started to have severe bleeding and cramps that made me miss school and work. When I started my master’s, I started to have pain with sex and with exercise. I would go for a five minute bike ride and vomit from the pain. I finally started doing my own research online and found out about endometriosis. It took a while, but I found some doctors who took me seriously.

Unfortunately, they also weren’t experts in the disease, and I underwent a diagnostic surgery and ablation where I still do not know everything they found or what happened during. I was still in horrible pain months after the surgery and the doctor told me that “I must just be one of those people who are in pain all the time.” She didn’t mention pelvic physiotherapy or pain management tools. I found a new doctor, who was more specialized in endometriosis and taught me about TENS units, how to effectively use anti-inflammatories, and referred me to an amazing pelvic physiotherapist.

Pelvic Physio gave me my sex life and exercise life back. But I still had serious symptoms from endometriosis. The new specialist keeps pushing me to take Orilissa, despite my history with severe depression, and discomfort with the drug. Over my life, I have tried at least 5 different birth controls and progesterone only pills. They always worsened my symptoms and have also made me suicidal and counteracted my Selective Serotonin Reuptake Inhibitor. My current doctor is supposedly the best  and I feel stuck with no other options. While recommending Orilissa, she told me that I could choose between being suicidal or being in pain. I don’t think she understands that none of these are acceptable options and that all I would like is a proper surgical assessment and treatment.

How does endometriosis affect your emotional well-being? 

I have chronic depression and anxiety that is treated well by Selective Serotonin Reuptake Inhibitor and therapy. This is separate from my endometriosis, but I have had it used against me to dismiss my symptoms (even though it is effectively treated). This dismissal has caused me serious mental health issues, much more than the symptoms of endometriosis. It is one thing to be in pain all the time, it is another to be told your pain is not important enough to be treated. That dismissal has taken an enormous toll to my self esteem that years of therapy is only just starting to repair.

I still have severe trauma around talking to doctors. The other biggest toll to my health has been hormonal treatments and birth control. I have almost killed myself multiple times on these medicines because they make me feel like I’m off Selective Serotonin Reuptake Inhibitor. Doctors have continuously not taken these side effects seriously, even when they previously have used my depression as an excuse to dismiss my pain. It is awful and dehumanizing. I also experienced serotonin syndrome when a doctor prescribed me tramadol alongside my Selective Serotonin Reuptake Inhibitor. The crash after the serotonin syndrome led to suicidal ideation and self harm. Neither the doctor or the pharmacist informed me that this was a possibility with my drug combination.