When Menstrual Pain Exceeds Normal… My Journey to an Endometriosis Diagnosis
I always thought my period was normal. Painful, but normal. I used to think periods were supposed to be this painful. When the pain started getting worse and worse, I talked to my gynecologist about my symptoms. She diagnosed me with dysmenorrhea, a fancy word for painful menstrual cramps. So, not particularly helpful. I assumed I was just one of those who get horrible periods, nothing to be done about it. I accepted that reality until my pain got so bad that I was getting cramps that rendered me unable to move. When I spilled an entire jug of water on myself because of an untimely cramp, I called it.
For years, when I’d mention my menstrual pain to other women, I consistently and overwhelmingly got the same question: Do you have endometriosis? I’d brought it up to my gynecologist a few times, but she never had much to say about it, so I let it go. I’d heard of a connection between endometriosis and infertility and, as someone who has always wanted to be a mother, I was more than happy not to poke that bear. But with my pain getting increasingly worse, I knew I needed answers more than the comfort of ignorance.
I made an appointment with an endometriosis specialist. I wanted to know if this was even a path worth pursuing. After I’d told the doctor my laundry list of symptoms: increasingly severe menstrual pain, painful bowel movements during my period, bowel cramps during my period, different kinds of cramps, pain that was resistant to medication, and more, he told me I was right in thinking of endometriosis. (Yes, ‘he,’ I was desperate here.) He also did an internal exam to confirm that I was experiencing internal vaginal pain. The only way to verify an endometriosis diagnosis is through surgery, so the doctor told me he thought the surgery would be a good idea. Florida hospitals weren’t allowing elective procedures at the time, so I couldn’t schedule anything yet. The doctor adjusted my birth control prescription and told me I’d have to wait until he could perform the procedure.
I talked to people around me about the surgery and ended up finding out that I have a family history of endometriosis. In the meantime, my pain and symptoms were getting worse with each period. I called the doctor again to see if there was anything I could do to help with my pain while I waited, and, luckily, they were able to schedule me for the following week. I had a diagnostic laparoscopy, in which two incisions were made in my abdomen for a camera to show whether there was any endometrial tissue on my ovaries. Later, my doctor explained that he didn’t see anything during the surgery but that he still believed I had endometriosis, just that it might be microscopic.
Normally, surgery for endometriosis would also include cutting out the tissue to reduce the patient’s symptoms. Since that wasn’t possible for me, my doctor performed a Laparoscopic Uterine Nerve Ablation (LUNA) procedure. Basically, he cut the nerves to my uterus. Unfortunately, even with that, I haven’t seen any significant change in my pain level, so my doctor decided to put me on Orlissa, a medication used in the treatment of endometriosis.
I don’t know what’s going to happen next or where this journey is going to lead me. I’m only at the beginning, but I do know that if I hadn’t advocated for myself and kept looking for answers, my pain would continue getting worse and worse, and I wouldn’t have had any clue as to why.
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