American actress, author, screenwriter, producer, and director Lena Dunham, and Indian-born American cookbook author, actress, model, and Top Chef television host Padma Lakshmi have shared their respective personal experiences and battles with Endometriosis in a Yahoo! Health feature article, in hope of raising awareness of the disorder.
Ms. Dunham, who says she only recently received a proper diagnosis, now publishes an Endometriosis-themed newsletter called Lenny, and describes being frequently in pain while growing up, not knowing why, noting that her condition can still impact her ability to work. Ms. Lakshmi relates in an interview with the Lenny newsletter that she struggled with the disorder for 23 years, the pain sometimes so debilitating she couldn’t work or socialize during those weeks, until she finally received a diagnosis at age 36.
Endometriosis is a common and sometimes debilitating condition of unknown cause, estimated by the US Department of Health and Human Services Office on Women’s Health Organization (OWH) to affect some five million American women. According to the Endometriosis Foundation of America, the disease affects approximately one in 10 girls and women worldwide, and costs the US $110 billion each year in lost productivity and medical bills.
In women with Endometriosis, cells of the tissue that normally forms the lining of the uterus — the endometrium — migrate to grow in a location outside the uterus, most commonly in the abdomen other pelvic organs: ovaries, fallopian tubes, vagina, cervix, bladder, bowels, rectum, tissues that hold the uterus in place or the tissue lining the pelvis. This misplaced tissue responds to the woman’s menstrual cycle in the same way the tissue lining the uterus does: building up, breaking down, and shedding.
Menstrual blood from the uterus flows out of the body through the vagina; however, the blood and tissue from endometriosis has no way of vacating the body, a state of affairs that results in inflammation and sometimes scarring (adhesions), both of which can cause the painful symptoms of endometriosis, and may contribute to the sufferer having difficulty becoming pregnant. Endometriosis growths are benign (not cancerous), but can cause serious problems including blocked fallopian tubes when growths cover or grow into the ovaries where trapped blood can form cysts, inflammation (swelling), formation of scar tissue and adhesions that may cause pelvic pain and make it difficult to get pregnant, and disorders in the intestines and bladder.
Pelvic pain including very painful menstrual cramps, long-term pain in the lower back and pelvis, pain during or after sex, and painful bowel movements is cited by OWH as the primary symptoms of Endometriosis, typically experienced by women of reproductive age, especially common among women in their 30s and 40s, and sometimes associated with infertility. Bleeding or spotting, infertility, and digestive problems are also symptoms. However, Endometriosis pain intensity varies, with some women who have a lot of endometrial tissue in their pelvis experiencing no pain at all, while others with milder cases of the disease can have severe pain.
Despite intensive research, authorities note that Endometriosis is a complex disorder that can be challenging to diagnose and treat — not least because many typical Endometriosis symptoms such as severe, painful menstrual cramps, painful sexual intercourse, and gastrointestinal disturbances like diarrhea, constipation, and nausea, are common to a wide range of other conditions. Moreover, each woman affected will experience Endometriosis symptoms differently, depending on the location and extent of her Endometriosis, so a combination of treatment options that work for one woman may not necessarily work for another, and it may take years of trial-and-error for a woman and her health-care professionals to identify the extent of her endometriosis and find an effective treatment.
Treatments for endometriosis may include exercise and relaxation techniques, painkillers — OTC or prescription, hormone therapy, and surgery in cases of severe pain that does not respond to less invasive treatments, with removal of the uterus, fallopian tubes, and both ovaries (a hysterectomy) being the best chance for a cure
The Endometriosis Foundation of America (EFA), co-founded by Padma Lakshmi, is dedicated to increasing disease recognition, providing advocacy, facilitating expert surgical training, and funding landmark Endometriosis research. Engaged in a robust campaign to inform both the medical community and the public, the EFA places particular emphasis on the critical importance of early diagnosis and effective intervention while simultaneously providing education to the next generation of medical professionals and their patients.
The EFA’s ENPOWR (ENdometriosis: Promoting Outreach and Wide Recognition) Project is a school and community based endometriosis education program, the only one of its kind in the United States, that raises awareness and promotes treatment-seeking behavior through an interactive presentation. Each presentation is tailored to the individual audience and encourages participation. Sessions end with a call to action, where the audience is encouraged to take the pledge, and share the information they learned with their friends and families to help spread awareness.
ENPOWR is primarily funded by the New York State Department of Health and Bloomberg Philanthropies, and has reached over 8,000 teens throughout New York City, Long Island, Westchester, Rochester, Syracuse and Albany. While teachers can see the importance of this education, students also understand the benefits of this co-ed presentation.
The EFA observes that whole early intervention is crucial to managing this disease and reducing adverse effects, on average it takes 10 years to reach a diagnosis of endometriosis.
Heightened Endometriosis risk factors include never having had children, menstrual periods lasting more than seven days, short menstrual cycles (27 days or fewer), a family member (mother, aunt, sister) with endometriosis, or a health problem that blocks the normal flow of menstrual blood from the body during periods.
Women experiencing endometriosis symptoms are encouraged to discuss them with their doctor, who may advise a pelvic exam, and/or an ultrasound to check for ovarian cysts. Magnetic resonance imaging (MRI) is another common imaging test that can be employed.
If the doctor finds no signs of an ovarian cyst, he or she may prescribe hormonal birth control to help lessen pelvic pain during periods. Gonadotropin releasing hormone (GnRH) agonists that block the menstrual cycle and lower the amount of estrogen the body makes may also may help pelvic pain.
The only way to confirm that a patient has endometriosis is laparoscopy a type of surgery that doctors can use to look inside the pelvic area to look for endometriosis tissue — an option usually chosen only for severe symptoms that haven’t responded to less invasive methods of treatment. During the operation, the surgeon can locate any areas of endometriosis and may remove endometriosis patches.
The Endometriosis Foundation of America
U.S. Department of Health and Human Services Office on Women’s Health (OWH)
The Society of Obstetricians and Gynecologists of Canada (SOGC)
National Library of Medicine PubMed