Today’s headlines, “Lena Dunham Underwent Total Hysterectomy to Help Endometriosis,” and “Lena Dunham Undergoes Hysterectomy Amid Endometriosis Battle,” elicits many strong feelings from endometriosis advocates and patients alike. While reading her newly published Vogue Essay, many patients who have suffered with endometriosis will certainly empathize with her feelings of hopelessness and devastation regarding the invasive pain she has had to endure for so many years. When celebrities speak about their challenging health issues it can shed much needed light on diseases like endometriosis that have been historically overlooked and dismissed. The challenge with such a spotlight though is making sure the balance between accurate medical information and the celebrity’s personal point of view is perfectly established, so patients consuming these headlines will get the most helpful information on their journey to good health.
Endometriosis is a disease that impacts 1 in 10 women. The American Society of Reproductive Medicine (ASRM) estimates that up to 50% of women who experience infertility have endometriosis. Endometriosis occurs when tissue, similar to that of the uterine lining, exists outside of the uterus. The body recognizes this tissue as foreign and its’ presence creates inflammation and pain. While it is often seen as a reproductive disease, endometriosis can be found throughout the entire pelvis impacting various organs such as the bowels, bladder, ureters, appendix, and gallbladder. Endometriosis can also be found in distal sites such as the sciatic nerves and even the lungs. Patients with endometriosis can range in having mild to severe symptoms, with some patients even being asymptomatic for the disease. Symptoms can include painful periods, painful ovulation, painful intercourse, constipation, diarrhea, chronic fatigue, frequent urination, and back pain to name a few.
The struggle is real...and without resolution
Unfortunately, many patients struggle to find effective treatments for endometriosis. Drugs prescribed to treat endometriosis are only palliative in nature and are not appropriate for those who are looking to get pregnant as they hinder fertility. According to the American College of Obstetrics and Gynecologists (ACOG), patients who do take these medications may find some relief, but it is only temporary as there is a high rate of pain recurrence once they stop. Many patients try and find relief through conservative laparoscopic surgery. Unfortunately, many of these surgeries only focus on the reproductive organs and leave much of the disease throughout the pelvis, leaving with it pain and further inflammation. After years of failed treatments and decades of pain, a lot of patients and providers start looking at a hysterectomy as their best left option, despite the fact that endometriosis by definition is a disease that occurs outside of the uterus and a hysterectomy will not cure endometriosis.
Reproductive endocrinologists and endometriosis advocates recommend having a consult to gain a deeper understanding of your reproductive health before making any definitive surgical decisions. Endometriosis advocates encourage patients who are struggling to seek out an endometriosis excision specialist before making any decisions that would limit reproductive choices. Endometriosis patients can find relief through multidisciplinary care which includes an expert surgeon who could perform wide excision surgery which would meticulously remove disease from all impacted organs. In conjunction with that treatment, endometriosis patients can also find relief in pelvic floor therapy, acupuncture and nutritional changes. It is also important that endometriosis patients connect with a mental health provider as well as other patients for further support as the disease can be as emotionally devastating as it is physically devastating.
The celebrity factor
Celebrities with a disease can shine a spotlight and drive awareness for that disease, heralding a key teachable moment for medicine. On the other hand, that spotlight can also serve as a double-edged sword. When reading Lena’s story carefully, it sounds like her uterus was the source of a lot of her pain. For patients with fibroids or adenomyosis, a condition separate from endometriosis that solely impacts the uterus, a hysterectomy could be a viable option for eliminating life altering, chronic pain. But when the public reads headlines referencing endometriosis, rather than ones that would be closer to the truth (i.e "Lena Dunham removes uterus after years of undiagnosed uterine pain”), we are left with no distinction between these two diseases. And that can easily lead to a slippery slope of misinformation and misunderstanding.
So while the choice that Dunham made was without a doubt a carefully considered and necessary personal choice, it is important to remember that her experience was exactly that...hers, and hers alone, specific to her own diagnosis. For those women struggling with endometriosis, distinctions that are informed by their own personal experience and diagnosis, truly matter. Preserving reproductive choice, establishing full informed consent between patients and practitioners and directing patients to early, proper treatment may not only save their fertility, but save them decades, or a lifetime of suffering.