The pain of endometriosis -- chronic, severe, and deep -- is compounded by an unsettling fact: there still aren't proven and tolerable non-surgical treatments to halt this complex disease, at least in part because of a lack of research funding, .
Hopefully that's on track to change as President Biden signs an executive order that would increase funding and place an emphasis on women's health research, including endometriosis and other under-studied conditions. Biden called on Congress to invest $12 billion in new funding for this women's health research undertaking. This effort would be part of a new program with the NIH to research ways to improve how we prevent, diagnose, and treat conditions that affect women.
It's high time for this funding. One of the current strategies to manage endometriosis is the routine prescription of hormones for teens and women with this condition, in which tissue and spiky lesions like the lining of the uterus grow outside the uterus. This management approach even the FDA's 2018 approval of a hormone-based drug to treat moderate to severe pain associated with endometriosis. While "dysregulated hormones" may be a feature of this complex condition, hormonal therapies may not target the underlying causes because we don't really understand them.
Our lack of understanding of endometriosis is linked to the lack of research dollars spent on studying it. In 2022, NIH research funding for endometriosis amounted to , or a of the 2022 health budget. That doesn't mesh with the of reproductive age who have endometriosis, nor the social and economic burdens it creates. In the U.S., medical care -- including infertility -- and lost productivity associated with this condition is estimated to cost annually.
That makes it even more urgent to answer the open questions about the , and to implement standard assessments that determine the precise nature of the hormonal imbalance in endometriosis. Blood tests may yield information to help guide decisions about diagnosis and treatment, but they cannot definitively diagnose it.
In fact, blood tests are not necessarily conducted at all because the sole parameter considered for this condition is pain, not hormone levels. Cardiac patients would not receive cholesterol-lowering medications without a doctor measuring their cholesterol levels, yet patients with endometriosis symptoms typically do not undergo a standard evaluation. It would strengthen endometriosis research to have every bit of data to help patients and solve larger questions about this disease.
Despite the lack of standard evaluations, endometriosis has become one of many women's conditions -- acne, polycystic ovary syndrome, menopause, hair loss, infertility, and low libido, to name a few -- treated with hormones. Depending on the type of hormones administered, the are vast, ranging from headache, nausea, weight gain, bloating, and depression, to a potential increase in the risk of cardiovascular events, blood clots, stroke, sleep disturbance, hot flashes, and eventual bone loss.
We don't have conclusive clinical trial data comparing the efficacy of most of these medications. That leaves many women slogging through different hormonal treatments, one side effect after another. While some with endometriosis respond to hormone-based treatments, the side effects can mask symptoms of the disease, and hormones do not halt its progression. For others, taking hormones may delay their diagnosis or exacerbate the disease. Patients trying to conceive also cannot use hormone-based treatments.
Surgery is the to diagnose endometriosis, though surgeons' skill level varies widely in this approach to treating the condition. They can only remove the spiky lesions they can see, but many are missed because they grow inward or are microscopic. Lesions can also reappear because we don't yet know how to keep endometriosis from progressing. That means some patients endure multiple surgeries.
We lack concrete studies for better identifying lesions and for comparing which surgical techniques are most effective -- ablation (burning or freezing) or excision (cutting). There is no "gold standard" or comparison of the two. Even a hysterectomy the condition unless surgeons also remove the ovaries and all lesions.
Medically, surgically, and biologically we're left with a painfully dissatisfying message to patients: This is the best we have.
In the meantime, debilitating symptoms of endometriosis and incomplete treatments compromise patients' health, quality of life, relationships, sex life, and fertility. For a , there is no relief from endometriosis even after menopause.
It's all worsened by the historic underfunding of research in this field. Remedying this requires a commitment to continued funding for research that addresses standard assessments and diagnostics, more conclusive data on medical treatments and surgical options, and more information about why people experience endometriosis.
If the White House to "improve how research on women's health is conducted and maximize the administration's investments in women's health research," we may have a better chance. If not, patients will remain in pain, and without answers.
is a professor at the Institute of Molecular Medicine at Northwell Health's Feinstein Institutes for Medical Research in Manhasset, New York.