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Jane Fam,
March is Endometriosis awareness month. Together, we acknowledge the battle for recognition of symptoms, quick diagnosis and effective treatment that endo warriors fight for, the world over. We hope you’ll learn more about this disease and raise awareness in your friend groups. We know that the more we talk about it, the better people will be able to recognize the symptoms for themselves. All too often we struggle with undiagnosed diseases, merely because we normalize pain and remain silent. If light is the “best disinfectant”, and “publicity” the “remedy for social and industrial diseases” then frank conversation is the wonder drug for stigmatized maladies.

We are excited to share two things with you to honor Endometriosis awareness month. First, in the spirit of generating empathy for the suffering of others, we have created an art piece in collaboration with Fela. You might remember Fela from our August newsletter. She has been living with endometriosis for over a decade. In this 5 minute video, she walks you through the lived experience of chronic illness through her own self portraits. It is a remarkable encounter, I will leave you to it.

The Cycle of Chronic Illness
Second, we sit down with endometriosis surgeon Dr. Megan Loring, Associate Director of the Newton-Wellesley Endometriosis and Adenomyosis Care Collaborative to talk about a uterine disorder related to, but less talked about than endometriosis: adenomyosis. I first met Megan at an NIH meeting on menstruation. Her approach to her patients – treating them as members of her family – stands out in the sea of surgical options. Trusting the health of your reproductive organs to a surgeon is a scary thought, no matter how skilled the professional. But knowing the person standing over you sees your humanity and is rooting for you in the operating room with the same energy as the people in the waiting room is extraordinary.

Megan and I recently spoke about adenomyosis – the phenomenon of endometrial lining growing into the middle layer of the uterine wall, which is mostly muscle, the myometrium. If you read this newsletter regularly, you know that endometriosis is a condition where endometrial like cells grow outside of the uterus. But what happens when endometrial like cells grow within the smooth muscles responsible for uterine contractions? This is a disease called adenomyosis. 
Megan went into women’s health because she wanted to empower people with knowledge. So often, women’s pain is ignored, dismissed or outright disbelieved. She watched women who struggled with pain no one else acknowledged, get a medical affirmation that their pain was real, and find liberation from that information alone. “I am NOT making this up.” Megan knew she wanted to create more opportunities for women to find that peace and validation. By specializing in adenomyosis, she has had a surfeit of such moments. 
Often, women who get so far as a diagnosis of endometriosis still find themselves in pain after surgery. They end up in her office, confused and looking for answers. Why did the surgery not resolve their pain? Their previous surgeon said they were now endo-free but the pain didn’t go away. “Am I making it up after all?” Megan finds herself helping these patients understand how endometriosis and adenomyosis are comorbidities. This means they often exist together but doctors don’t always know to check for adenomyosis when they do look for endometriosis which results in continued pain, even after the endometriosis has been treated.
Why don’t gynecological surgeons always check for both diseases? To understand the answer to this question, it’s important to know how adenomyosis was historically diagnosed. In the past, a definitive diagnosis of adenomyosis was only made after a hysterectomy. You would send specimens from the smooth muscle of the uterus to the pathology lab for confirmation that endometrial cells had invaded the uterine wall. This was a retrospective analysis, done after the uterus had been removed. Most women had their uterus removed in their late 40s and 50s after they had finished having families, so doctors began to believe adenomyosis was a disease of that age group. The artifact of an inferior method of diagnosing disease drove the entire epidemiological framework of understanding it. Adenomyosis wasn’t a condition that affected women closer to menopause, that’s just when doctors picked it up because they finally had access to the uterus post hysterectomy. 
From "Subserosal intramural ectopic pregnancy in an adenomyotic area following assisted reproduction treatment" Abdel-Gadir et al.
Ultrasound and MRI technology are beginning to change the diagnostic landscape for adenomyosis. Imaging allows expert sonographers to visualize the architecture of the myometrium. A healthy endometrium looks different from one with adenomyosis on ultrasound. Adenomyosis can present in different ways: it can cause the uterus to look speckled, it can be present as an asymmetrical thickness between the front and back walls of the uterus or even have black pockets of fluid. But frameworks established when you were trained as a young doctor are sticky and so many women end up with an “endo-free” bill of health from their surgeons, even if they still have adenomyosis. 

Megan finds herself looking at uterine ultrasounds of women who just came out of laparoscopic surgery, providing them with more insight. This will change over time. Right now, even with advancements in imaging modalities, it is still difficult to diagnose adenomyosis. First, you have to know the importance of performing an ultrasound on patients undergoing laparoscopy. Second, reading shadows on images is an art. The quality of the interpretation depends on the skill of interpreter.  Research has shown that the diagnostic performance of imaging changes based on the experience of the person examining the images and not everyone is experienced.
What we do know is that the “health” of the myometrium is an important aspect of both pain and reproductive potential. As the diagnosis of adenomyosis becomes more standardized and easier to detect, we will have the power to investigate other critical questions: does the health of the myometrium contribute to miscarriage risk? Do people with adenomyosis have more pain than endometriosis alone? Are egg implantation rates affected for individuals with compromised uterine muscle architecture?

We are at an exciting juncture for menstrual health. I reflect on Megan’s desire to go into this field. She says it’s satisfying to be able to fix things with gynecological surgery. I hear that a lot from gynecological surgeons and much of it resonates with me. I hope Jane can provide these caretakers with the tools to identify all the things in our bodies causing pelvic pain. 

Our understanding of female reproductive disorders will be dramatically different in the next decade. We are ready for this future. Happy Endometriosis Month.


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