For 26 Years, I Was Told I Had 'Female Troubles' — Until I Was Properly Diagnosed
I want to help others avoid years of pain, misdiagnoses, and unnecessary testing.
Aris Leoven | Canva As I marched ever closer to turning 40, I was often struck by how life can unfold — how beautiful and completely unexpected it can be at any moment. I never could have imagined that I — an actor, singer, massage therapist, and intuitive energy healer — would be diagnosed with and later publicly share my journey with endometriosis, a congenital disease where the endometrial tissue appears outside the uterus and usually causes severe pelvic pain and other uncomfortable symptoms.
I had suffered from this condition since my first period at age 12 — and it took almost 26 years for me to be correctly diagnosed and treated. Only last year did I receive the recommended surgical treatment for the disease which makes me hopeful that I can enjoy a much-improved quality of life and, perhaps, even a longer one. I am sharing my story as a newly minted #endowarrior in hopes that it will help others avoid years of pain, misdiagnoses, and additional diseases plus unnecessary testing and procedures.
My first period was very painful and made me weak, exhausted, and nauseous. I knew cramps were normal and turned to over-the-counter medications. This marked the start of a decades-long search for a painkiller cocktail holy grail. Aleve was my drug of choice although it was still only partially effective. Taking it got me through high school.
A wake-up call came my freshman year of college when I fainted in the shower from period pain. After college, I developed one of my most persistent and perplexing hormonal symptoms yet: discomfort in my gums akin to an intense desire to teethe.
By the time I was in my early 30s, I had seen several gynecologists, none of whom could help me. One winter in my late 30s, I got my period every two weeks. I began spotting and having significant ovulation pain and tests showed that a cyst on my left ovary was growing, and there was now another one on my right ovary. My health was now occupying a great deal of my energy.
One day in rehearsal for a show, one of the other female cast members stumbled off stage looking weak and pale. She had gotten her period but wasn’t able to take her painkiller in time. She told me she had endometriosis. This was the first time I had ever heard anyone I knew to have it.
Because the endo celebrity activists like Amy Schumer usually mentioned symptoms I didn’t yet have — like vomiting, GI discomfort, back pain, and continual menstrual pain even without having a period — I had dismissed it as a possible diagnosis for me. But here was someone who presented like me. To my surprise, she explained there wasn’t any treatment, and like me, she was reliant upon painkillers.
When this show’s contract ended in December 2022, I resolved to see the most competent gynecologist I could find. She determined that not only did I still have both ovarian cysts, but I also had two small fibroids. And she was almost 100% certain I had endometriosis.
This was a disease that I had endured for decades without knowing what it was called. I did a deep dive into the condition, its perception in the medical community, and the extremely limited and largely unsuccessful treatment options available, including the birth control I ultimately chose. Before I took birth control pills, I had an IUD for two years, which helped somewhat. Several years later I was put on the lowest dose of estrogen birth control but after only two months both my blood pressure and my cholesterol skyrocketed. I got off birth control and set about finding a doctor who could help me deal more effectively with endometriosis.
My dad, a retired doctor, explained to me how medicine has increasingly become more specialized over the last 40 years and recommended I see an endo specialist. OK, that sounds great. Where do I find one?
My mom suggested I find out who Amy Schumer saw and start there. Thank you, Instagram! Dr. Tamar Seckin was tagged in Schumer’s post-op post. A surgeon who specializes in endometriosis, he fully excises all lesions laparoscopically by hand — rather than using ablation which merely burns them off, another approach which often results in their growing back.
Costs for endo surgeries range from $15,000 to a jaw-dropping $42,000, and, adding insult to injury, most medical insurance, mine included, does not cover the cost of endo excision surgery — only the less effective ablation procedure.
Once I accepted the reality of my limited options and the fact that I was beyond fortunate enough to have access to the viscerally jaw-dropping cost of the surgery I needed, it was an easy decision to go with Dr. Seckin.
The ultrasound in my initial visit with Dr. Seckin — probably my tenth in two years — reconfirmed both cysts and two or maybe three fibroids. Next, an MRI showed signs “suggestive of endometriosis.” I booked the next available surgery date while in a dressing room backstage at the show I was doing at the time. I underwent laparoscopic excision surgery on June 8, 2023, the procedure considered to have the highest success rate for eliminating endometriosis symptoms and preventing recurrence.
Through my first three menstrual cycles, I had excruciating period pain, terrible acne, and frequent night sweats, as I was told I would before the surgery. But three months out, these symptoms had subsided, and I was feeling significantly better. My gum discomfort practically disappeared as did such vaginal symptoms like copious amounts of discharge that I didn’t realize I had until they were no longer there.
The pathology report found three to four fibroids and five of the potential 18 lesions removed tested positive for endo. But the left ovarian cyst was classified as a mucinous cystadenoma with calcifications which, while then benign, is recognized as a precursor of ovarian cancer. This news affected me profoundly, but I held onto the fact that we all have these kinds of potential medical vulnerabilities — whether we know about them or not — and at least mine had now been eliminated.
For the first time in my life, I had a confirmed clean reproductive system.
I will soon mark the first anniversary of my surgery. I still can’t believe I have more energy, only very occasionally slight gum teething, significantly less acne, night sweats, and food cravings. I now only need two Aleve once a day for two days during my period and I have been free of ovarian cysts. I am feeling great and am extremely optimistic about my journey forward.
The physical and emotional results of being cyst-free are almost impossible to describe. I have been gratefully learning what it’s like to simply exist in each moment. I am not a celebrity activist but I feel a tremendous responsibility to share my story now that I am lucky enough to have this chance at a fresh start. I hope that hearing about my experience will reassure you, my fellow endo warriors, that you are not alone and that you, too, can find out what it’s like to finally live life to the fullest.
Nikki Yarnell is a New York and Chicago-based actor, singer, healer, and massage therapist.