A tale of my body trying to destroy me from the inside out.
by Sasha Sigel
Chapter 1: Ibuprofen as God
Once upon a time, I got my first period. I was 13 and felt uncomfortable and strange, but wasn’t in a great deal of pain. Within two years, however, I was blacking out in my school hallway as I hobbled to the nurses office for the medicine I thought would save me: ibuprofen. (Ha.)
There are stories I tell doctors to communicate the intense level of pain I experience with menstrual cramps: like when I had to leave a 9th grade state exam to go throw up, even though the teacher had told us we would be disqualified from the exam if we left the room. Anecdotes like this are helpful for medical professionals to take me seriously and understand how my quality of life is affected.
While there are stand out memories like that, there are so many mundane experiences of pain that made up my daily life. I’d keep crackers by my bedside (to prevent nausea) so I could take ibuprofen as soon as cramps would wake me up in the night. I’d place two overnight pads to cover the full length of my underwear, and still leak blood onto my pants. I’d lay curled in bed with a hot water bottle for hours. I didn’t think of any of this as concerning or irregular— that’s just how periods were.
Chapter 2: On and Off Birth Control
After a few years of this, I went on birth control, which did provide significant relief and made my periods manageable. Yay! I still had some of the symptoms from my early years as a menstruator, but they were muted.
Fast forward 10 years, when I got curious about how hormones could be affecting my health adversely in other ways, and what my body would be like without them. I stopped taking birth control, and for the first few months, everything seemed fine.
Then I started getting painful periods akin to my 9th grade throwing-up-and-blacking-out chapter. The last straw for my poor uterus was when I a massage practitioner added an abdominal massage (without my consent) and pressed so hard that he ruptured an ovarian cyst. Literally. An hour later, I was in the most excruciating pain of my life. I was teaching a yoga class, and ended it early because. As we ended the class with “Om,” I started to black out. I crawled to my manager, who had been taking class in the front row, and said “I need you to come to the bathroom with me. I’m about to be really sick.”
My manager, bless her heart, stayed with me for 45 minutes as I vomited, shit my brains out, moaned and rocked on the bathroom floor. I had no control over the sounds coming out of my mouth and no shame about my manager witnessing my explosive diarrhea. What a potent reminder that we truly are animals. Just when she was about to call an ambulance, the pain started to subside. As you can imagine, I did feel mildly (ahem) embarrassed the next time I saw her… my frontal cortex had come online by then. Thank you, Sarah!
Nothing like that had ever happened to me before, so I went to a GYN. She suggested I had IBS, and informed me that one could not tell the difference from pain in the stomach from pain in the uterus. I told her that while she might not be able to make that differentiation, I certainly could.
I asked for an ultrasound, and though she still insisted it was IBS, the results indicated a ruptured ovarian cyst. So. Okay.
After that experience, my periods were never the same. I often called my roommate or partner to help me walk to the bathroom or bring me ibuprofen in bed.
Are you laughing about ibuprofen being the main character in this story? I am! Ha.
I would end up lying on the bathroom floor, unable to move. I missed work, cancelled social plans, and had to leave meetings early to throw up. The physical and emotional toll was high.
Chapter 3: IUD? More like OWW!
In 2020, I went to a new GYN who thought I had endometriosis. It was the first time a doctor had ever mentioned the disease, and I was stunned.
“What? I can’t have endometriosis! That’s not part of my story,” I thought.
But my symptoms matched up. She recommended I get an IUD, and that I would likely have very light or no periods at all with the IUD.
I was wary of the pain I’d witnessed from friends and family getting IUDs, and asked the GYN if there was a greater likelihood of experiencing intense pain due to my history of painful menstruation. She said no– all I needed was Aleve. (Switching it up from ibuprofen—nice!)
The insertion itself was quite painful, but the hours afterwards were debilitating. All the muscles in the lower half of my body seized up, and it felt like I couldn’t move my legs. In tears from the nauseating pain, I called the doctor’s office and asked to be prescribed stronger pain medication– they laughed. Literally. After about 8 hours, I was able to fall asleep. I spent the next few days recovering from the traumatic procedure.
My periods did not get lighter or stop- bummer. In addition to my full periods, I now had intense pelvic pain and muscle spasms throughout my cycle. They would come without warning and buckle my knees. I nearly missed my flight because I couldn’t get off the airport floor. I’d be bent over the sidewalk in Manhattan, waiting for the deep muscle spasm to release. Was the pain better or worse? It was simply different.
Chapter 4: Endo Specialist
A little background– one can be officially diagnosed with endometriosis only by laparoscopic surgery. Endo implants can sometimes show up on very high quality MRIs, but rarely. After waiting months to see an endo specialist, he ordered an MRI. Based on the thickening of uterine ligaments, the report indicated “deep infiltration pelvic endometriosis.” But because I hadn’t had laparoscopic surgery, it was not a true diagnosis.
My specialist gave me two options:
-Remove the IUD to address the muscular pelvic pain it was causing, and start continuous oral birth control in an attempt to stop bleeding all together.
-Explore excision surgery to remove the implants/lesions.
Being quite cautious of surgery and with a growing history of medical trauma, we agreed I’d try birth control for 3-6 months. If it didn’t work, we’d return to the surgery discussion.
Once on birth control (again), I started pelvic floor physical therapy to address the (9!) trigger points I’d developed, which I believe to be the result from the IUD. My PT patiently worked with me for a year and a half before I “graduated” with significantly less pelvic pain and spasms. Thank you, Nidhi!
Over the next 3 years, I tried three doses of birth control in an attempt to manage daily breakthrough bleeding. Sometimes it was a bit of brown spotting, and other times it was a full period that would last for weeks. While all the GYNs I saw agreed that I shouldn’t be bleeding daily for years, they didn’t have ideas about what to do other than increasing and decreasing the dosage. Acupuncture made the biggest difference, and my acupuncturist worked diligently to address the imbalances she saw. Thank you, Ariel!
After a particularly rough two months accompanied by intense cramping, heavy bleeding, an urgent care visit, dizziness, exhaustion, and migraines, I tossed the BC in the trash. Enough was enough. Within a week, the bleeding was gone.
Chapter 5: The Great Unknown
Which brings us to… today! I’m awaiting my next period– my first without hormonal influence since 2020. I have an appointment with my specialist to talk about other treatment options, including the possibility of surgery.
There isn’t a neat ending for this story, and I’ve come to accept that there won’t be. Endometriosis is a chronic and (currently) incurable disease. If I decide to undergo excision surgery, the likelihood that endo implants will grow back is high. For me, the end goal is pain management, symptom reduction, and meeting each chapter with presence and creativity.
One thing that has helped immensely is self education and connecting with others who have endo. Since this journey began, I’ve trained in Pelvic Floor Yoga and various reproductive support courses. Understanding the disease has helped me make educated decisions. Now, I love sharing info and working with folks creatively through pelvic floor yoga. A majority of my clients have endometriosis or other pelvic health concerns. I’ve seen how powerful community support can be as we learn to live well with endometriosis.