In 2014 a few years after the birth of my daughter, I was diagnosed with endometriosis, a condition I had never heard of. In addition to becoming a new mother, I had to learn about this new disease that was consuming my life.
Even as a woman who gave birth in a hospital, it was only then I really came to an awareness of what bias in the medical system looked like. This past year the preventable death of a young woman diagnosed with endometriosis has not only changed our lives, it further highlighted the Bias towards women and that lack of urgency surrounding this debilitating disease.
I felt it was important to share my story in hopes of educating and bringing awareness to this common yet neglected condition.
Unlike men, most women will seek medical attention when something seems off. But did you know they are also the most neglected when it comes to validating their experiences?
Sound familiar? You are not alone, one in five women say they have felt that a health care provider has ignored or dismissed their symptoms, or have been gas lit. Studies show compared with male patients, women who present with the same condition may not receive the same evidence-based care especially when it comes to pain management.
In a recent article by Emily Paulsen Recognizing, addressing unintended gender bias in patient care, Janine Clayton, MD, director of the Office of Research on Women’s Health (ORWH) at the NIH states “The origins of this situation go back many years… Much of medical science is based on the belief that male and female physiology differs only in terms of sex and reproductive organs, she says. Because of this, most research has been conducted on male animals and male cells, Clayton explains. “This is a major root of this issue.”
Period Pain is not Normal - is it A Warning Sign?
Did you know that periods aren’t supposed to be painful? Despite everything we’ve been told from cramps being a normal part of menstruation to everyone experiencing painful periods is a myth. In fact, periods should not be painful and when we do experience discomfort this is a sign that something isn’t quite right and suggests there may be a hormonal imbalance, nutritional issue or underlying health condition that needs to be addressed.
Miller stated, “With society often dismissing women’s pain and a relatively brief record of research inclusive of women, it is unsurprising that many of the chronic pain conditions for which we do not have direct treatments are more common in or exclusively affect women.” There are many reasons for differences between the sexes when it comes to pain, and pain itself is always subjective. More research is needed into painful female conditions, such as polycystic ovarian syndrome and endometriosis, but the way medical providers perceive complaints from both genders also needs to be addressed.
What is endometriosis?
Endometriosis is a disorder in which tissue similar to the lining of your uterus grows outside of your uterine cavity. It can also include large cysts that form on your ovaries. Endometriosis occurs when endometrial tissue grows on your ovaries, bowel, and tissues lining your pelvis. The hormonal changes of your menstrual cycle affect the misplaced endometrial tissue, causing the area to become inflamed and painful. The lack of severe pain in some women leads to them never seeking help and not realizing they suffer from this condition for a long time until they are trying to conceive.
Endometriosis affects an estimated 1 in 10 women during their reproductive years (ie. usually between the ages of 15 to 49), which is approximately 190 million women in the world. Beyond the physical, it changes your quality of life completely at every touch point draining your energy.
Common symptoms include painful periods, cramps 1 or 2 weeks around menstruation, heavy menstrual bleeding or bleeding between periods, Infertility, pain during sexual intercourse, discomfort with bowel movements , lower back pain that may occur at any time during your menstrual cycle.
As a result of pelvic pain being the most common symptom of endometriosis, many women mistake it with period cramps and aren’t able to distinguish the difference and notice that there is a bigger problem.
Because endometriosis can affect so many parts of the body — including the vagina and rectum, intestines, bladder, and diaphragm — doctors may misdiagnose it as a different chronic condition. The misdiagnoses and wide array of symptoms may contribute to how long it takes healthcare professionals to diagnose this condition.
Source: Variety Power of Woman
Gender Bias for Women of Colour
Why does representation matter?
Research suggests that patient-provider racial and gender concordance can have many benefits. Black female doctors represent only 2% of physicians.
A Black female patient receiving care from a Black female doctor has more trust, better communication and shared medical decision-making.
In addition, studies indicate that racial and ethnic minority physicians are more likely to practice primary care and serve in underserved communities than their white counterparts.
Black women are three to four times more likely to die from pregnancy- or childbirth-related causes. From cradle to grave, statistics prove a Black woman in the U.S. can expect to have worse health outcomes. She is 40 percent more likely to die from breast cancer — even though they’re less likely to have breast cancer and are more likely to die from cancer in general.
She is less likely to receive a prescription for painkillers in the ER, even when her level of pain presents to be the same level of pain and symptoms as a white patient.
Why it Matters
Aubrion Rogers was a pediatric therapist who worked with autistic children. She expressed her frustration of not being taken seriously with her endometriosis through her social media.
After demanding an ultrasound, she found out she had three fibroids, one cyst, one enlarged ovary and one large mass that was 11cm.
Aubrion went into cardiac arrest from complications of endometriosis and died in recovery after an emergency surgery that came way too late. She passed away in January 2022 from complications related to the condition at the young age of 30. Her preventable death outraged the community.
Source: The Endometriosis Summit: Patient & Practitioner Town Meeting Facebook Page
How to manage with Endometriosis
Endometriosis is treatable but not curable. While seeking medical care is always the primary course of action here are some pain management and inflammation reducing techniques that have been known to be effective in conjunction with your health care plan that I have personally found helpful:
- Using a heating pad or hot water bottle on your lower abdomen or back
- Make changes to your lifestyle; such as diet and getting exercise
- Drink lots of water and herbal teas to flush out toxins
- Taking a hot bath with epsom salts
- Doing relaxation techniques, including yoga meditation and my personal favourite yoga nidra.
- Seek complementary forms of therapy such as pelvic floor physiotherapy, functional medicine, hormone therapy, naturopaths, and acupuncture.
- Explore mayan, arvigo massage as well as castor oil packs and vaginal steaming
- Wear supportive comfortable underwear that use natural fabrics in the gusset.
Mayana Genevière Mercedes Panty
How Quality Underwear Helps Endometriosis
If you’re anything like me; solutions to make your quality of life better are everything.
When I was diagnosed with endometriosis the comfort and function of my undergarments quickly became a priority once again, very reminiscent of my postpartum recovery days. I cannot stress enough how undergarments impact your quality of life.
On days where you have flare ups or your period your underwear is the LAST thing that should be bothering you, in fact it should make you feel supported and comforted.
Things to look for in your underwear:
- Stretch with support
- Natural fabrics that reduce your exposure to chemicals.
- comfort design with fuller gussets and tummy coverage.
Living with endo I LIVE in my MG underwear that are literally designed to do just that. If you’re tired of frumpy granny panties to get you through those difficult days here are they provide solutions.
- I made sure our high waist underwear stretched but still offers support without stretching out - ideal if you experience the discomfort of #endobelly plus it doubles as a great layer between your skin and hot water bottle.
- Reducing our chemical load has been proven to improve symptoms of endometriosis. Sustainable in the name of health, I am very intentional in our fabric selections all our undergarments are made with natural fabrics that are breathable especially in the gusset.
- They’re beautiful and they LAST. Something to make you feel a little better about yourself especially on days when we don’t.
Assess environmental hormonal disruptors
The chemical loads from your environment have been proven to disrupt your hormones exposing our bodies to the absorption of these chemicals making endometriosis symptoms worse. Here are ways to minimize exposure:
- Plastic and BPA are hormone disruptors. Also known as endocrine disruptors, which are chemicals that alter reproduction function- switch to glass when possible and do not heat up food in plastic.
- Wearing underwear made with natural fabrics and low impact dyes
- Using reusable cotton or disposable organic cotton pads
- Many cleaning products, detergent and fabric softeners contain chemicals that are toxic to the human body and look for natural alternatives.
- Be mindful of Body products containing fragrance and other chemicals
Fact: Using non organic period products can worsen endometriosis symptoms because they contain harsh chemicals like dioxins and perfumes that can cause irritation. Wearing comfortable yet supportive underwear with Organic Cotton gussets are so important. It helps keep your intimate area chemical-free a proven healthier choice for your body.
“In addition, women—especially those in child-bearing years—were excluded from clinical trials for many years, in part to protect them and their fetuses from potential adverse effects. Researchers also felt that they could not adequately control for women’s variable hormonal status. “Because we have studied women less, we know less about them,” Clayton says. “The result is that women may not have always received the most optimal care.”
Other ways to take back your power is to educate yourself on what works for you. There is no one pill that fits all solutions, our health is a very individualized approach. Ways you can continue to champion your health are as follows:
- Advocating for yourself by reminding yourself YOU are the expert of your body
- Get second opinions especially if the response doesn’t feel right
- Join a group with other people for their feedback on Doctors and quality of care as well as help to make your voice heard.
- Ask for a copy of all your records and keep them in a binder or digitally
- Educate yourself on what works best for you.
Finally, find support wherever you can, friends, family and those living with endometriosis can be your biggest champions when you are too exhausted to look out for you - Community support is equally as important as self-care. A special thank you to my 12 year old Lorenna, who purchased this hot water bottle for me for christmas. As we’ve all learned over the past two years nothing is more important than our health.