An Evil Disease
This is not the outcome I desired, but I do not regret advocating for my health, for pursuing answers. I wish I had pursued them decades sooner.
Around 4AM on July 16th, I dialed 911 from the floor of my bedroom. For the second time in five months I’d woken with acute abdominal pain so severe, I blacked out. The pain distressed my stomach and bowels, reduced my vision, rendered me nearly incapacitated, only able to whisper into the phone from a semi-conscious state.
The first time it happened I dismissed the episode as food poisoning. I’d been on my period and my cramps were often debilitating. Gastric distress, the inability to walk were sometimes par for the course. Granted I’d never blacked out before, but at dinner I’d eaten a shrimp dumpling that tasted off.
Over the years multiple doctors have assured me that my pain was normal. They all promised symptoms would improve after menopause. Sometimes I would point out that menopause was 20, 15, 10+ years away, so what should I do in the meantime? My options were always birth control, pregnancy, hysterectomy, or simply soldier on.
For the most part, I’d learned how to manage my pain. Diet, herbal tinctures and teas, heating pads, mind-body practices to regulate the central nervous system had all served me well, but as the years passed, my pain increased, became less predictable, more resistant. I developed chronic pain in my lower left side, the muscles tight and inflamed despite rest, PT, and body work. I began losing range of motion in yoga. My runs were cut short by excruciating spasms in my pelvis. Periodically I felt like I had a low grade flu, even though I wasn’t sick. In fact, I’d never been in better health or shape. My blood work was stellar, my stamina strong. Then the blackouts started.
In the ambulance, I did my best to describe my symptoms. The EMT asked me how I knew my BP was low. I was drenched in cold sweat, my breathing labored, vision fading in and out. It’s happened before, I whispered. He asked me if I was pregnant or menstruating. No, I said, but I’m due in a day or two. On the way to the hospital, he took a reading, remarking that my blood pressure was indeed dangerously low. If you tried to stand, he said, you’d fall over.
At the ER I overheard him tell the nurses I was probably on my period. When the doctor finally came to see me - by this point the pain had ebbed and I was feeling more stable and alert - she exclaimed that everything was fine. Good news!, she chirped. Nothing serious!
She hadn’t even examined me.
I explained that after my first blackout, my GP instructed me to go to the ER if I experienced a repeat episode. She’d been less convinced of my self-diagnosed food poisoning. The ER doctor told me not to worry, lots of women have bad periods. She pulled out her cell phone to show me an anxiety app. Download this, she said. I asked her to please order a test. She replied, Why would I radiate a perfectly healthy abdomen? I insisted and she finally gave in, sending me for an ultrasound that came back “inconclusive” (like all the ones before), though it did show a cyst on my left ovary. I was told I was fine, my blood work was perfect, no treatment necessary.
I wish I could say my story is unique, but there is nothing special about my experience. Women make up half the world’s population - 49.7% in 2022 - and yet ongoing sex and gender inequity make women, girls, and anyone with a female reproductive system, more vulnerable to poor health and at a higher risk of death, including from maternal causes.
Women are prescribed the same medicine at the same dosage as men, even though we have been historically excluded from clinical trials and are twice as likely to experience severe side effects. Even female lab mice experience sexism. Pharmaceutical scientists find their fluctuating ovarian hormones “too complicated,” “cumbersome,” and “expensive.” It wasn’t until 1993 that the FDA reversed a 1977 recommendation to exclude women with childbearing potential from clinical studies, and it wasn't until 2016 that sex became a required consideration in all National Institutes of Health-funded studies to test for sex differences.
This systemic gender bias also affects how our healthcare system responds to women’s pain. In emergency rooms women experience longer waits, are given weaker painkillers, and are more likely to be treated with anti-anxiety meds. My own story is a prime illustration.
It’s been one year since my first blackout, and in that time I have been diagnosed with stage III Endometriosis and Adenomyosis. I have undergone multiple surgeries including hysterectomy and excision. I have learned that my left ovary and ureter were adhered to my uterus by endometriotic lesions, and that scar tissue - the result of persistent internal bleeding and dysfunctional immune response - was splattered throughout my peritoneal cavity.
It’s an evil disease, said my surgeon to my husband.
This is not the outcome I desired, but I do not regret advocating for my health, for pursuing answers. I wish I had pursued them decades sooner.
March is Endometriosis Awareness Month, and April is sometimes recognized as awareness of Adenomyosis, so now is as good a time as any to share my story. These diseases are not well known or understood - at best they are a footnote in most medical training - but advocates are hard at work demanding more funding and more research. Roughly 10% of the world’s female population of reproductive age - about 190 million women and girls - are thought to have endo. On average, they will see 8+ doctors over 7-10+ years to secure diagnosis, which is a very long time to live with debilitating pain, fatigue, chronic inflammation, and a host of other bodywide symptoms. A direct correlation can be drawn between this delay and symptom severity and infertility. My symptoms began when I was 16. I wasn’t diagnosed until 25 years later, and only because I had both the means and stubborn fortitude.
Whether or not you possess a female reproductive system, this information may profoundly affect your life or the life of someone you care about. The current estimate of 1 in 10 is thought to be much higher since it’s based on those with the ability to seek treatment - many suffer in silence, many believing “it’s just a bad period,” and periods are still considered taboo. The chances of these diseases affecting someone you know is high.
You know your body better than anyone, and we must each be our own advocate for our health. I was reminded of this by the kind radiologist who performed my ultrasound that morning in the ER. I want to encourage you to keep pushing for answers, she said. Ask about endometriosis. I watched her write a note on my report, a note that the ER doctor crossed out - but that note, that conversation, her belief in me and her encouragement, were a turning point in my journey.
Below are some of the resources and information that have aided me in my quest to understand these diseases and my healthcare options. Please share. They just might change someone’s life.
Thanks for reading, friends.
What is Endometriosis & Adenomyosis?
As defined by the Endometriosis Coalition, endometriosis is “tissue similar, but not identical, to the lining of the uterus that is found elsewhere in the body.” Endo is a chronic inflammatory disease creating lesions that can be located in the pelvis, attached to the bladder, bowels, kidneys, appendix, diaphragm, or even in the lungs and brain. These lesions can cause systemic inflammation, severe pain, organ dysfunction, and the formation of scar tissue. The disease is staged 1 to 4 based on size and proliferation, though these stages do not always correlate to severity of pain.
Endometriosis impacts approximately 1 in 10 individuals assigned female at birth and is rare in individuals assigned male at birth. Symptoms are often dismissed as “bad cramps” leading to an average 10 year delay in diagnosis. - Nancy’s Nook, About Endometriosis
Adenomyosis a painful condition where the uterine lining invades the muscle of the uterus. The main symptoms are uterine cramping and bleeding.
How are They Diagnosed?
The only way to definitively diagnose endo is by biopsy of cells collected during a laparoscopy. Imaging tests may suggest the disease, but are not definitive. Unfortunately, due to lack of accurate information and training, many medical professionals are ill-equipped to diagnose and treat patients. Nancy’s Nook, a living library of info about endo and adeno, provides a list of doctors who have been through a rigorous peer review process. It’s a great tool to find a specialist.
What Are the Symptoms?
One reason endo is so difficult to suspect and therefore diagnosis is because the symptom profile is extremely wide and varied, unique from person to person, and often presenting as a host of other conditions. The following abbreviated symptom list comes from the Center for Endometriosis Care:
Crippling pain during menstruation (also in the days leading up to)
Chronic abdominal, pelvic pain
Dysfunction of bowel and urinary systems; IBS is a common misdiagnosis
Pain with sexual activity and/or use of tampons
Infertility and pregnancy loss
Allergies, migraines, and fatigue
Coughing up blood due to pleural/thoracic endometriosis
Pain in legs and lower back
Learn more about symptoms here.
What Are the Treatments?
There is no cure for endo, but treatments are available. Experts agree that the gold standard for treating endo is excision surgery, which cuts the diseased tissue out of the body. (Imagine pulling a weed by its root.) When performed by a skilled surgeon, recurrence rates are low. Some doctors will suggest ablation, which burns off the top layer of cells, and while this may help alleviate symptoms for some patients, it does not remove the disease. (Imagine mowing the weed, leaving the root.) Other treatments include hormonal medications, many with side effects so severe, they outweigh the benefit, and anti-inflammatory drugs. A hysterectomy is NOT a cure for endo, though it is the only definitive cure for adeno. Learn more here.
Lifestyle factors like reducing stress; eating a healthy, anti-inflammatory diet; and pursuing holistic practices such as mind-body work, acupuncture, and physical therapy can help patients manage symptoms and improve their quality of life. I have found Know Your Endo to be a helpful resource, and I’m looking forward to receiving my copy of Heal Endo.
Additional Reading & Watching
Ask Me About My Uterus: A Quest to Make Doctors Believe in Women's Pain by Abby Norman
Beating Endo: How to Reclaim Your Life from Endometriosis by Iris Kerin Orbuch MD and Amy Stein DPT
Adenomyosis Support on Facebook
Nancy's Nook Endometriosis Education on Facebook
Outsmart Endometriosis: Relieve Your Symptoms and Get Your Career Back on Track by Dr. Jessica Drummond