Endometriosis Linked with Hundreds of Comorbidities

By Pat Anson

Endometriosis is one of the most frustrating and debilitating conditions a woman can have, causing physical, sexual and emotional pain that’s difficult to diagnose and treat.

Patients who have endometriosis are often told it’s “all in your head” or that “you’ll grow out of it.” Few of them do. Nearly 200 million people worldwide suffer from endometriosis, including about one in 10 American women.

A new study at the University California-San Francisco (UCSF) is providing new insights into endometriosis, linking it with hundreds of comorbidities such as cancer, Crohn's disease, and migraine. The research could improve how endometriosis is diagnosed and treated – ending some of the silence and misconceptions about the disease.

Researchers analyzed the electronic health records of over 43,000 people with endometriosis, comparing them to a large control group without the disease. Their findings are published in the journal Cell Reports Medicine 

“We now have both the tools and the data to make a difference for the huge population that suffers from endometriosis,” says senior author Marina Sirota, PhD, a professor of pediatrics and interim director of the UCSF Bakar Computational Health Sciences Institute. “We hope this can spur a sea change in how we approach this disorder.”

Endometriosis or “endo” occurs when blood-rich tissue that grows in the uterus is expelled each month during menstruation, spreading to the ovaries, fallopian tubes, abdomen and other nearby organs. The misplaced endometrial cells implant themselves in the new host tissue and grow, causing internal bleeding, inflammation and pain.

The wayward cells can be removed by surgery, but endometriosis is usually treated with hormones to suppress the menstrual cycle. Not everyone responds to surgery or hormonal therapy, which can have side effects. Removal of the uterus is a last-ditch treatment usually reserved for older women, but some women continue to have pain even after a hysterectomy.

“Endo is extremely debilitating,” said co-author Linda Giudice, MD, a physician-scientist in UCSF’s obstetrics, gynecology and reproductive sciences department. “The impact on patients’ lives is huge, from their interpersonal relationships to being able to hold a job, have a family, and maintain psychological well-being.”

In analyzing patient data, researchers looked for comorbidities linking endometriosis with other medical conditions, and found over 600 of them. Some were previously known, such as infertility, autoimmune disease, and migraine. Some were unexpected: certain cancers, asthma, and eye-diseases. The findings support the growing understanding of endometriosis as a “multi-system” disorder that causes dysfunction throughout the body. 

“This is the kind of data we need to move the needle, which hasn’t moved in decades,” Giudice said. “We’re finally getting closer to faster diagnosis and, eventually, we hope, tailored treatment for the millions of women who suffer from endometriosis.”

The association of endometriosis with migraine, for example, opens the possibility of treating endometriosis pain with medications that block calcitonin gene–related peptides (CGRPs), a relatively new class of migraine drug. In recent years, the FDA has approved over half a dozen CGRP medications for migraine prevention and/or treatment.

CGRP medications tend to be expensive, but so is endometriosis. One study estimates that the lifetime cost of having endometriosis in the U.S. is about $27,855 per year per patient, or about $22 billion annually. 

Covid Made Healthcare Even More Difficult for People with Chronic Illness

By Roger Chriss, PNN Columnist

As the U.S. enters its third year of the pandemic, Covid is changing chronic illness care in important ways. Not only is long Covid being recognized as a new chronic illness, but the pandemic’s impact on hospitals, drugs and medical supplies, and everyday life for people with chronic illnesses is growing.

The CDC recognized the problem last year. Not only are people with chronic illnesses like diabetes, heart disease, chronic obstructive pulmonary disease (COPD) and kidney disease at greater risk of severe illness from Covid-19, the CDC says the pandemic has “raised concerns about safely accessing health care and has reduced the ability to prevent or control chronic disease.”

Hospitals have repeatedly had to delay routine care in the past two years. As hospitals run short on staff and beds, people whose medical conditions require regular care are struggling to keep appointments. NBC News reported last month that “prolonged lack of access to medical care because of Covid surges is having an outsize effect on patient care.”

The American College of Surgeons is warning that delayed elective surgeries “can lead to more complicated operations and longer recovery times because disease can progress during the delay.” Moreover, delays in cancer screening can lead to further progression of the disease and more complex surgeries.

Recently the American Red Cross put out an urgent call for blood donors because the pandemic and winter weather have combined to force the cancellation of hundreds of blood drives, creating the worst blood shortage in over decade. The “blood crisis” is so severe that doctors have to decide which patients will get blood transfusions and who will have to wait.

The pandemic has also impacted the drug supply for chronic illness. False claims about hydroxychloroquine being an effective treatment for Covid in early 2020 led to shortages for people with lupus and other autoimmune disorders who need the drug, which took many months to correct. In 2021, claims the anti-parasitic drug ivermectin could also treat Covid led to shortages.

Now in early 2022 the antibody drug Evusheld, which can help protect immunosuppressed people against COVID-19, is in short supply. NPR reported Evusheld is so hard to get that some hospitals are selecting patients by lottery.

Medical supplies are still difficult to find. While some people protest any form of mandatory face covering, masks have been a way of life for immunocompromised people for many years. A high-quality mask like a N95 can literally save lives, and such masks are still in short supply. The same for nitrile gloves and other simple medical supplies that may be essential for at-home care.

Covid is also impacting everyday life. People with chronic illness, in particular those with compromised immune systems, do not have the luxury of being “done with Covid.” The ongoing presence of a viral pathogen will limit them for the foreseeable future. Even when the omicron Covid surge starts to wane, they will need to keep using high-quality masks, weighing risks when going out, and tracking possible exposure.  

"There is a casual acceptance that the pandemic will turn into something endemic, an inevitability that ‘everyone’ will get COVID eventually,” disability rights advocate Alice Wong told NPR. “Leaders, medical professionals and public health experts have said something along those lines with zero acknowledgement that people will still die and those deaths will be disproportionately from high-risk groups.”

It has become trite to say that Covid mostly affects people with “comorbidities.” It’s important to note that comorbidities are found in the vast majority of people over 30, and that chronic illness is a fact of life for some people that cannot be cured. Covid impacts their lives in significant ways. Hopefully, public health officials can come up with new approaches that don’t require the chronically ill to risk more and endure more as the rest of the country tries to get back to normal.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research.