Data shows that nearly 1 in 10 women have endometriosis. This disease negatively affects millions of women worldwide yet still leaves us with questions about the female body, hormones, and fertility. Much research is needed, but a growing awareness is one way to help women get the answers they’re searching for now.
Using the information we do have about endometriosis today, women and medical experts are taking steps toward greater discoveries. For Endometriosis Awareness Month, which occurs every year in March, let’s explore how and why this conversation is so important.
What is Endometriosis?
Endometriosis is an estrogen-sensitive disease where cells of the uterus lining (the endometrium) grow outside of the uterus. This abnormal cell growth causes inflammation, pain, and tissue buildup on or around female reproductive organs. Other than the uterus, endometriosis can be found on a woman’s fallopian tubes, pelvic cavity, ovaries, rectum, intestines, cervix, and more.
Research has shown that 30% to 50% of women with endometriosis struggle to get pregnant. Endo can be a silent disease, showing no obvious symptoms for some. 5-10% of women in America have asymptomatic endometriosis. - American Society for Reproductive Medicine
For others, endometriosis can cause excruciating symptoms throughout a woman’s menstrual cycle. Sometimes severe pain goes unaddressed for years until it’s finally diagnosed.
Dr. Dan Martin, the Scientific and Medical Director of the Endometriosis Foundation of America, found that at least 80% of women have mild dysmenorrhea (painful periods). But 20-40% have severe dysmenorrhea, some of which don’t respond to treatment via over-the-counter pain relief medication. When unbearable period pain persists, it could be a sign of endometriosis.
Other symptoms of endo can include:
Painful periods that get worse, not better, over time
Little to no relief from NSAIDs (non-steroidal anti-inflammatory drugs)
Pain during or after intercourse
Menstrual cramps that don’t subside after the first day of bleeding
Pain during ovulation
Heavy bleeding or hemorrhaging during your period
Gastrointestinal (GI) symptoms like bloating, nausea, diarrhea, constipation, rectal pain
Fainting during your period
Learn more about endo symptoms, diagnosis, and treatment on the Fempower Health podcast with Dr. Dan Martin. He shares his in-depth research on endometriosis, dysmenorrhea, and pelvic pain.
When to Seek Help
Women that get help early have the best chances at avoiding worsening symptoms and infertility. Endometriosis causes hormone irregularities and affects the anatomy of a woman’s womb. Severe cramps and pain throughout your cycle are not normal. If you have symptoms that affect your life, visit an OB-GYN or pelvic pain specialist.
Pelvic Pain: Is it Endometriosis?
Pelvic pain is a broad term for abdominal/reproductive pain in women. There are a few potential causes:
Dysmenorrhea (pain during your period)
Dyspareunia (pain during sex)
Acute pelvic pain (pain happening now - due to cysts, kidney stones, etc.)
Chronic pelvic pain (ongoing pain - often seen in endometriosis, scarring, other diseases)
Adenomyosis (endometrial tissue that grows inside the uterus, as opposed to outside)
Getting to the root cause of pelvic pain isn’t easy, but talking to a doctor is a place to start. It sometimes takes an ultrasound, sonogram, or MRI to determine what’s going on.
Feeling Dismissed by Your Doctor
In our society, women have experienced the normalization of period pain for generations. When we need solutions to pain that isn’t normal, we’re often advised to grab a heating pad or take a nap.
Because endo is still so under-researched, consulting a specialist can be helpful. Endometriosis expert and surgeon Dr. Tamer Seckin says: “If you do not understand the disease, you cannot treat it.” And sadly, not all doctors understand endometriosis yet.
Need support dealing with endometriosis? Browse our endo resource page.
Diagnosis and Treatment
So far, there are a few treatment options for endometriosis, but no cure. Diagnosis can take time, especially if someone:
Isn't aware of endometriosis
Doesn’t know how to discuss specific symptoms.
Whether you’re a woman or a medical professional, early (and correct) diagnosis is important to get the treatment and care a woman needs. Some experts have shared the ins and outs of endo diagnosis and treatment— go here to listen.
Exercise, nutrition, and addressing hormonal issues have been found to sometimes relieve endometriosis. Women’s bodies require lots of energy to go through the changes during their cycles, so the quality of food and movement are important to consider.
NSAIDs are over-the-counter pain relief medications like Advil or Ibuprofen. For mild to severe period pain, NSAIDs can relieve symptoms enough for women to live normal lives. If the pain doesn’t subside from more than 800mg of Ibuprofen (four regular-strength pills), see your doctor.
Oral contraceptives (AKA “the pill”) suppress estrogen production in the body. Excess estrogen can increase inflammation, which heightens physical pain. Estrogens can even increase endometriosis tissue growth. When endo is diagnosed, hormonal birth control is a common treatment option.
Like any medication, there are side effects. In this case, that could mean bloating, mood swings, migraines, high blood pressure, and more. Let your doctor know of any major changes you experience during birth control.
According to Dr. Martin, 12-15% of patients being treated for severe pelvic pain don’t respond to initial treatment (NSAIDs or hormonal birth control). When this is the case, the chances of endo diagnosis go up to 80%.
Sometimes surgery is needed to remove endometrial tissue in the body. In extreme cases, some women get hysterectomies to stop producing endometrial tissue altogether.
Finding a surgeon is another struggle of endo treatment. Although OB-GYNs have adequate knowledge about the female body, they might not be the best physician to perform surgery for endometriosis unless they have experience.
The surgery success rate at resolving endometriosis depends on the patient, doctor, and severity of the disease. Sometimes, new tissue can grow, and estrogen sensitivities can cause symptoms to reappear.
To hear more about endometriosis surgery and treatment, listen to Dr. Tamer Seckin on Fempower Health.
The Future of Endo
After talking to experts for Endo Awareness Month, we see there is some hope for women who struggle with pelvic pain and infertility. Endometriosis is more widely known than it was ten years ago, but we still have a long way to go. Here are a few ways we can keep working toward a more hopeful future.
Self-Awareness: Women can educate themselves and each other on reproductive health. Knowing how to spot abnormal symptoms, tracking your cycle, learning about the vagina, and talking with women of different generations about their experiences can piece together the puzzle and inform medical providers toward better solutions.
Social Awareness: Sharing the reality of women’s health, hormones, endometriosis, and infertility can help society end the stigma and instead support women who need guidance. Sharing your story of endometriosis empowers other women to get help and find the relief they need.
Early Diagnosis: Diagnosing the root cause early is the only way we can prevent infertility and the progression of endometriosis. Timely treatment can save women from suffering long-lasting effects and fertility struggles.
Medical Advocacy: Medical professionals can listen to women with pelvic pain and start asking more questions. Clinical trials, endometriosis studies, and embracing the unique concerns of female health can open doors to clearer discovery and treatment.
Please share this article with someone who needs to learn about endometriosis.
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