Endometriosis, a chronic and painful disease, affects approximately one in 10 women in reproductive age. But if endometriosis is such a prevalent disease, why is it rarely spoken about?
Although we are seeing the influence of a few celebrities, particularly Padma Lakshmi and Julianne Hough, openly talk about endometriosis to help raise awareness, the sad truth is that many young girls and women—some never even properly diagnosed of having the disease—live their lives suffering through the pain.
"I remember when I was in high school, there were girls on my soccer team who would take several ibuprofen before our games when they were on their period. I thought they were being overly dramatic! Now as a gynecologist, I wonder which of those girls had endometriosis," recalls Dr. Joy Brotherton, an obstetrician-gynecologist at Harbor UCLA Medical Center and Ronald Regan UCLA Medical Center.
In this conversation, Dr. Brotherton uncovers the truth about endometriosis and offers her expert medical advice on how to manage and relieve the symptoms of this ugly disease.
"I hope that women reading this, even if they don't have symptoms, will gain some understanding of this difficult disease and have compassion for family and friends, and even girls on their soccer team, who may be suffering. The more people who know endometriosis exists, the faster women who are in pain can get diagnosed and treated," she says.
The Gospel of Beauty: For those who are not familiar with this disease, what exactly is endometriosis and what causes it?
Dr. Brotherton: Endometriosis occurs when tissue that is similar to that normally found within the inside lining of the uterus, grows outside of the uterus. This tissue can grow and implant in areas of the pelvis, on the ovaries, even on the bowel. These implants or “lesions” are stimulated to grow by estrogen, a female sex hormone. When stimulated by estrogen, commonly during a woman’s menstrual cycle, these lesions can bleed and break down and cause painful symptoms that can be debilitating.
TGOB: Aside from debilitating pain, what are the common symptoms of endometriosis?
Dr. B: It’s important to note that each woman experiences pain differently. Some women have painful periods but many also have pain when they are not on their period. The pain can be chronic and interfere with her daily activities such as her ability to work, go to school, etc. Other common symptoms include, pain with intercourse, bowel movements, and even with urination. Heavy menstrual bleeding, difficulty getting pregnancy, and feeling sick, faint, or vomiting during your period are also not uncommon for women with endometriosis.
TGOB: Why is this disease often misdiagnosed?
Dr. B: Endometriosis has been called “the great imitator” because it can affect many different organ systems; therefore, mimic other diseases. This makes it hard to diagnose and women can suffer for many years before proper diagnosis.
Many women don’t know the symptoms of endometriosis or how to address them with a healthcare provider. There is a big perception that many of the symptoms of endometriosis are “normal” or “just part of being a woman”. Also, we do not have a non-invasive blood test to diagnose endometriosis.
TGOB: So what's being done to help raise awareness?
Dr. B: “Get in the Know about ME in EndoMEtriosis” was created to inspire women to learn about and understand endometriosis. The campaign, sponsored by AbbVie, seeks to educate and empower women to evaluate whether they are the “ME in endoMEtriosis” by finding out how to identify and address symptoms of endometriosis with their healthcare professional.
The website MEinEndo.com offers helpful resources, including a checklist of common endometriosis symptoms, a symptoms tracker and a doctor discussion guide, which can capture valuable information to use during a visit with a healthcare provider.
TGOB: What are some of the most common misconceptions about endometriosis?
Dr. B: The biggest misconception about endometriosis women have is that their symptoms, such as chronic pelvic pain during or between their periods or during intercourse are “normal” or just “part of being a woman”. The pain women with endometriosis suffer can be debilitating. It can interfere with day-to-day activities, affect their work, and put strains on their relationships. This idea that pain is “normal” is another factor that can contribute to the six- to 10-year delay in diagnosis that many women experience.
TGOB: What are the dangers of misdiagnosing and the risks of not properly treating this disease?
Dr. B: Over time, without proper diagnosis and treatment, endometriosis lesions can grow and the disease can progress. Endometriosis is not a disease that you can see from the outside but for women experiencing the symptoms, it can become increasingly difficult to participate in daily activities, such as work, school and family events. Relationships with their partners can become strained as it can be painful to have intercourse. These strains over time can lead to depression and feelings of isolation.
TGOB: For women suffering from this condition, what modern-day medical advancements are available to help treat or manage this disease?
Dr. B: It’s important to understand that endometriosis is a chronic disease that requires a long-term plan. Women with endometriosis need to find a healthcare provider that they are comfortable working with. They should discuss all of their options and come up with a timeline, especially if they are considering pregnancy. Every woman is different, so treatment options vary and may include medication, surgery, or both.
TGOB: What are some of the questions women need to ask their doctors before moving forward to any invasive medical surgery?
Dr. B:If a woman gets to the point where she is discussing surgical treatment with a healthcare provider, it is important to find a surgeon who specializes in endometriosis surgery. She should discuss things like future fertility and minimally invasive options, such as laparoscopic or robotic surgery. Surgery for endometriosis is not without risks and may require post-operative medical management.
Women can use a doctor’s discussion guide, such as the one on MEinEndo.com, to help facilitate the conversation with their healthcare provider. Questions in the guide include: How long have you been suffering from the pain? Has your pain been worse over time? Do you feel pain with sex? These questions may help inform what treatment is appropriate. It is important to weigh all the options. Every woman is different and the pain can return, even after surgery.
TGOB: Other than surgery and pain relievers, what home remedies or alternative treatments would you recommend for immediate relief?
Dr. B: Hot water bottles to the lower abdomen may provide relief. Hot baths and relaxation techniques with aromatherapy and deep breathing may help alleviate some pain in an acute setting. I think incorporating natural/alternative therapies for endometriosis into a woman’s treatment plan can be beneficial. Exercise (I am a huge fan of yoga), acupuncture and diet can be helpful.
Endometriosis is a disease fueled by the hormone estrogen. There are a lot of hormones in the food we eat, especially in some meat and dairy products. Women who suffer from endometriosis should look at all aspects of their health to help improve their symptoms. There are some herbal medications that holistic or naturopathic practitioners may recommend. Again, each woman is different which is why it is so important to find a healthcare provider you can work with long-term.
TGOB: Why do you think there is such shame or stigma to publicly talk about endometriosis? And how can we change the conversation about this disease?
Dr. B: The shame and stigma exist because endometriosis is not a disease you can see from the outside. Women who miss work and girls who stay home from school because they are in debilitating pain may be thought of as sickly, complainers, or slackers. No one wants to be thought of in that way. And so, women who don’t want to be perceived as complainers may not advocate for themselves or seek care in a timely fashion. There is a lot of misunderstanding and we still have much yet to learn about the disease.
Working together to educate others will change the way endometriosis is understood. Women looking to learning more should visit MEinEndo.com and join the conversation online by sharing #MEinEndo. You can also “Stay in the Know” by signing up to receive more information about endometriosis and campaign updates.
TGOB: While I have not been diagnosed, upon researching about endometriosis, I realized I had the same symptoms—pain, bloating and gastrointestinal issues—during my period. However, I have not had these issues after giving birth. Is there truth to beliefs that giving birth and birth control can help manage the symptoms of endometriosis?
Dr. B:I have had patients whose symptoms of endometriosis improved after pregnancy. When a woman is pregnant and then breastfeeding, her estrogen levels are lower. She is also not ovulating or menstruating. We know estrogen fuels endometriosis. We also think menstruation and ovulation may play significant roles in the development of endometriosis, so that may explain the anecdotal stories of women whose symptoms improved after pregnancy.
There are different ways to help manage endometriosis-associated pain, including oral contraceptives and IUDs. Because every woman’s symptoms and medical history are different, women should speak with their healthcare provider about their symptoms and discuss all their options. She should also be prepared to try multiple and different treatment options throughout her lifetime.