By Alexa Santory
We’ve all heard the word, and some of you may even know someone who has it. Reproductive health is constantly under attack in the U.S., with access to proper care being cut left and right, and with more than 200,000 cases of it every year (source), endometriosis is common enough to be a major concern for most women. Periods, as we know, can be painful on their own. Endometriosis pain can magnify that times 10. But despite how common it is, it’s still shrouded in a certain level of mystery. Even further, women of color often suffer in silence due to racial bias in medicine. So what do we need to know about endometriosis?
What exactly is endometriosis?
Endometriosis is a chronic disorder where the tissue that lines the inside of the uterus (the endometrium) starts to grow on the outside of the uterus. It has detrimental effects on your ovaries, fallopian tubes, and the tissue in your pelvis. It’s also extremely painful, especially when you’re on your period.
The uterine lining is what we shed on our periods, so it goes through the same process when it’s growing outside — except with endometriosis, this hardened tissue has no way of exiting the body, causing severe pain during your period, sex, and in everyday life. Pelvic pain is the most prevalent symptom, and it often gets misdiagnosed as pelvic inflammatory disease or ovarian cysts (endometriosis can cause ovarian cysts, but they’re not the same thing). Excessive bleeding on or between your periods is a major symptom as well.
In severe cases, endometriosis can lead to fertility issues. The thing about endometriosis that makes it so mysterious is that is can take 7 to 10 years to diagnose from the first signs of it (source). Imagine that. Almost a decade of severe pain until doctors can really be sure of what it is. To add insult to injury (and to be critical of the American healthcare system real quick because, let’s face it, it’s pretty abysmal for most of us), the only way for a doctor to make a proper diagnosis is through laparoscopic surgery--a minimally invasive surgery that requires small incisions and probe cameras to see the insides of the abdominal area (source), a surgery that most insurance companies consider elective. This is a problem. Women are quite literally suffering daily from this chronic illness and insurance companies are just like act as if we don't need help with that. We do!! The lack of access to help for people unknowingly experiencing endometriosis is concerning and the impact of the system is felt the hardest by women of color. Here are some of the most common, early signs of endometriosis:
Cramps and pelvic pain may be more severe and last longer into your period.
Pain during/after sex.
Pelvic pain during or after sex is extremely common.
Painful bowel movements/urination.
It’s more likely to be painful around your period.
Blood flow may be very heavy during your period and you may also bleed between periods.
Since endometriosis has an impact on the Fallopian tubes, ovaries, and uterus, it may lead to the inability to conceive. People often seek fertility treatments like IVF.
There are also typical period symptoms like nausea, bloating, and fatigue, but experienced much more intensely. It may seem like your period on steroids, and the reality is that for a great deal of people experiencing these symptoms, they can be debilitating and may cause them to miss work, school, and other important life events. If you experience or have experienced any number of these symptoms, it’s recommended that you speak to a doctor about taking the next steps towards treatment. Bad news is that there is no cure for it and no one really knows what causes it, but the leading theory is that it’s genetic. Good news is that there are treatments for it that can help you get your life back on track if your symptoms have made you less available to the world.
How is endometriosis different for WOC?
In terms of symptoms, they’re no different. Women of color experience the same symptoms of endometriosis as any other group of women. The difference lies in the amount of care and attention women of color receive when complaining about pain they’re feeling. Racial bias in the medical field, as well as medical providers ignoring complaints of pain from women of color, have been a common theme throughout our history and it was Black women’s bodies that were being poked, prodded, and violated in the early days of what is now modern gynecology (source)
Our pain has always taken a backseat to that of our non-POC sisters, and with more and more cases of endometriosis being diagnosed every year, women of color aren’t standing for it anymore. A dialogue has been started within the Black community about being more open about endometriosis--what it is, and how often Black women experience it. So what are some of the ways we can have our voices be heard on this matter? Being a person of color in white spaces, especially professional white spaces, has its challenges. Standing firm in your convictions and letting your doctor know how serious the issue is to you and your health is a start. Be firm and don’t let them give you the runaround if it’s something that’s really concerning you. Access to good healthcare in communities of color is less than desirable, but finding a doctor of color who is able to empathize with you on that level is also a good option. Do what you have to do to take your health into your hands and don’t allow medical professionals to take advantage of you or ignore what you know you’re feeling. At the end of the day, no one knows your body the way you do!
What to do with your diagnosis
Any type of medical diagnosis can come with a whole lot of emotions. But like with any other diagnosis, it’s important to stay level headed and rational wrapping your head around endometriosis. It’s okay to cry and be upset and go through the motions of it all, of course, but it’s also important to not let it consume you. With an illness like endometriosis, treatment options are abundant. It’s scary and stressful knowing you’re dealing with something that’s considered chronic, but an end of the world mentality is counterproductive! Be gentle with yourself and your body at this time. Going into it, try mentally preparing yourself for every possible outcome and always ask questions. The more questions the better, honestly. Also, stay off the internet leading up to your doctor’s visit. WebMD can really send you spiraling. Because the pain can be so debilitating, don’t skimp on your self care and do whatever you have to do to make yourself feel comfortable.
What are the treatment options?
Laparoscopic surgery is the only way to truly get a proper diagnosis. This minimally invasive surgery works by making small incisions and inserting camera probes to examine the abdominal area. They can also take steps to remove some of the hardened tissue that’s causing the pain. However, we’ve already learned that this surgery is considered elective and paying for it out of pocket is unrealistic for many of us. In the meantime, your doctor may put you on birth control to help regulate your hormones and your periods and reduce any pain caused by endometriosis. In terms of a cure, there isn’t one unfortunately. However, women with endometriosis who have made the decision to stop having children opt for hysterectomy, which is a surgery that removes all of the reproductive organs from the body. It’s considered the definitive treatment for endometriosis but it’s only an option if you no longer want to have kids (source).
How can I deal with it naturally?
There are definitely some lifestyle changes you can make. Diet is everything and a lot of what we eat nowadays is filled with hormones that end up interrupting our body’s own. Switching to a more organic diet, or just including more organic and hormone free foods in your diet can help alleviate some of the crazy hormone fluctuations. Cutting down on alcohol and caffeine can also help with hormone levels. Cutting soy out of your diet will help to, since it can mimic estrogen. Adding more anti-inflammatory foods to your diet can help as well. Upping your intake of turmeric can help reduce the growth of tissue outside the uterus because it might slow down the hormone estradiol, according to one study. Turmeric has been used in Ayurveda for centuries because of its anti-inflammatory properties. It’s one of the best supplements to take when dealing with intense inflammation. You can also take milk thistle, an herb with anti-inflammatory properties that also helps detox the liver and regulate estrogen levels. Probiotics, vitamin B6, and omega-3 fatty acids all have a hand in helping regulate hormone fluctuations and reducing inflammation (source). These are good to have in your medicine cabinet as well as continuing with treatment as advised by your doctor. And, always always keep a heating pad on deck! This is the best thing to help ease up those tense pelvic muscles that are causing cramps.
Dealing with a chronic illness is no cakewalk and with the odds continuing to stack against women’s reproductive rights, it’s only getting more difficult. If you feel like you’re having symptoms or your symptoms reflect those that are on the list, please listen to your body and schedule an appointment with your doctor. Ask tons of questions and don’t let your voice go unheard when you tell your doctor about how much pain you’re in. If you’re dealing with a diagnosis, be gentle with yourself and take the proper steps in caring for your body and your mind. You’re gonna be okay!