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Living With PCOS As A Black Woman

"I went from WAP to DAP, had a painful vagina, and recurrent bacterial vaginosis no matter what I did to cure it."

Human Interest

Heavy periods, weight gain, mood changes, pain, and acne. Sounds like normal symptoms of that dreaded time of the month, right? Maybe. But it actually could be more than that. It could also be symptoms of a hormonal disorder called polycystic ovary syndrome (PCOS). PCOS is a condition that affects a woman's ovaries. Women who have PCOS often experience irregular periods (infrequent or prolonged) due to PCOS' effect on the reproductive hormones. Doctors aren't exactly sure what causes PCOS and in fact many women don't even know they have it and often chalk the symptoms they are experiencing up to menstrual cycle symptoms.

PCOS affects women of all races and ethnicities who are of reproductive age. In fact, one study's findings "suggests that there are no racial or ethnic influences on the prevalence of PCOS." So, while black women are not necessarily more prone to PCOS, they are often misdiagnosed or misunderstood. "Most of my PCOS warriors are white or Hispanic. I've found that black women have had trouble with their diagnosis. They have no idea that they have it. In the black community, a lot of us aren't even aware of what PCOS is or how to support each other. But as an overall community, we are being recognized more, and more women are doing their research and finding fellow PCOS sisters. We're finding out how to change this stigma of people brushing it off like it's not real," said Alicia W. shared with xoNecole.

September is PCOS Awareness Month and women like Alicia, Mieko, and Tanny are doing their part to educate and bring awareness of the disorder, all while educating women on PCOS. Check out their stories below.

Alicia W.

I remember having severe cramps, like I was on my cycle. Not too long after, I began to think something was wrong. I was trying to Google what was wrong with me until the pain got out of control. It got so bad my boyfriend took me to the emergency room. After arriving at the hospital, I was told that a cyst had ruptured and I was given the diagnosis of PCOS. Before then, I knew something felt a little weird and a little off.

"I was experiencing period symptoms, but they were happening without a period and they were coming more frequently than my period was coming. I brushed off all of those symptoms. I never thought to look into PCOS because I was going to my OB/GYN every year and it never came up."

In terms of treatment, I have been on just about everything you can possibly imagine. So, initially when they diagnosed me, they told me that all I needed to do was lose weight. No medicine, no nothing. I ended up dealing with the same symptoms for two years. I came home and started going to my current OB/GYN. I tried Metformin and it was horrible. It was not for me. It made me sick every time. I even tried to take it off and on along with birth control. But with birth control, my hair growth, also known as hirsutism, was getting worse. I was getting cystic acne and having more pain.

What I'm doing now is Ovasitol. I just started this year and it has been what works best for me by far. It's amazing. Ovasitol is a powder supplement. You mix it in your water or whatever drink you choose. It helps to level out hormones, control cravings, and regulate your cycle. I still have symptoms, but they are more manageable. The only thing you can't really reverse is the hair growth. That's the only thing that has not been managed. Literally after a month of Ovasitol (even without taking it regularly), my period came back after six months of not having one. I also take Goli gummies as well, just as an additional vitamin to help give me some energy in the morning.

"I hope that more black women feel empowered to talk to their doctors about PCOS. As black women, we are completely overlooked because we are traditionally heavier or have more curves. We are immediately told to lose weight which is not the answer for everyone. When we tell them about our symptoms, they attribute it to needing to lose weight. They rarely look into anything else."

One day, I put a little quiz on my Instagram story for women to take to see if they have PCOS symptoms. I received about 35 DMs from black women saying, "Oh my God, I think I have PCOS!" I was thinking what in the world is happening when these women are going to see their doctors? My advice to other women would be to ask questions and be sure they are listening to their bodies. I would also encourage other women to raise awareness because there are so many women out there going through the same thing.

To continue following Alicia's journey, be sure to follow her @lelestyleme.

Mieko B.

After about two years of my partner and I trying to conceive, I finally made an appointment with my OB/GYN and expressed to him my concern of not conceiving. My periods were usually normal. Every now and then, they would be three to five days late but I didn't think too much of it and I also would get painful cramps and heavier cycles with larger than usual blood clots. I also noticed the last few years I've been getting more unwanted body hair which was pretty embarrassing. I even found myself hiding it from my partner.

"It did take a few appointments, bloodwork, HSG, and then finally my laparoscopic and hysteroscopy procedure for my doctor to finally say that it was PCOS. It seemed like my doctor did not want to diagnose me before getting all of those tests done but after doing research myself and matching up some symptoms, that's when I pretty much self-diagnosed myself."

Since I was only diagnosed a month ago, so far I've mainly been focusing on regulating my diet, being that I want to tackle this the most natural way possible. I've cut down on my sugars and white flour. I've increased my omega-3 intake and other supplements. I've also increased the amount of light exercises I do and added more stretching to my regimen.

After being diagnosed with PCOS, the effects have been more emotional than physical. Although I do have physical symptoms more around ovulation and my period, it doesn't affect me as much as the mental side. The emotions of knowing that I have been diagnosed with this and that it will take me more effort to finally conceive, it has become a bit discouraging and I tend to blame myself.

"Every month, for pretty much the past two years, I cry every time my period comes and this was even before officially being diagnosed because I just knew something was wrong. I do feel that I am more prone to have mood swings and I have a major shift in my emotions and little things make me cry easily now."

My words of advice to other black women living with PCOS is to stay strong! When you're dealing with something so personal, you tend to question why this is happening to you. Never blame yourself or beat yourself up over this diagnosis, try your best to come up with a regimen that will specifically help you and your symptoms and stick to it. Most importantly, remember that you are not alone.

To continue following Mieko's journey, follow her @Scxbanx.

Tanny B. 

I experienced a wrath of vaginal and hormonal issues that had an impact on my health. I was extremely anxious, moody, had a low libido, dry scalp, skin problems, my periods were irregular or would appear for more than 14 days, and one of the biggest detectors for me was consistent vaginitis due to my hormone imbalances.

"I went from WAP to DAP, had a painful vagina, and recurrent bacterial vaginosis no matter what I did to cure it. I tried at-home remedies, over-the-counter drugs, I even meditated on my vagina but nothing worked."

I visited several physicians until I found one with the patience to investigate my health problems. I was diagnosed with PCOS in 2017, after an extensive hormone and blood test which showed disproportionate hormones and excess in androgen. To this day, it is rare to find a physician to diagnose and provide real PCOS advice. I didn't receive any advice or helpful info after my diagnosis.

After I received my diagnosis, I wasted no time to do my own research on how I could improve my symptoms. At the moment, I take several vitamins and supplements to improve my well-being and fight PCOS symptoms. Myo & D-Chiro Inositol, Vitamin D, Omega-7, a probiotic, a multivitamin, and maca root powder, to name a few. I've realized it's so important to stay active and maintain a PCOS-friendly diet.

I cope with my PCOS roller coaster by venting through my blog vtalksgyn.com. It's the best way to connect with other women and to let other black women know that they are not alone in the fight. I also struggle with low libido which has a direct affect on both my mental and sexual health. For a long time, I had no sexual confidence because I felt like my vagina just didn't work. Throughout the years of experimenting with various supplements, products, foods, and birth control, my symptoms are kept at bay by staying true to my daily regimen. I have a strong support system of friends who work to understand my journey which makes my day-to-day hardships just a little easier.

"When I received the news that I had PCOS, I cried for an entire week and had absolutely no guidance. In my mind, it meant I would never have children and that my vagina was broken. One day, I decided that I would not be defeated by my disorder."

I want to scream, "PCOS is not the final destination!" Take control of your symptoms and become stronger than your excuses! Take one day at a time, listen to your body, and do what makes you feel best. We have to support one another and continue to have these types of conversations so none of us feel alone.

To continue to follow Tanny's journey, be sure to follow her @Vtalksgyn.

Featured image by Shutterstock

ACLU By ACLUSponsored

Over the past four years, we grew accustomed to a regular barrage of blatant, segregationist-style racism from the White House. Donald Trump tweeted that “the Squad," four Democratic Congresswomen who are Black, Latinx, and South Asian, should “go back" to the “corrupt" countries they came from; that same year, he called Elizabeth Warren “Pocahontas," mocking her belief that she might be descended from Native American ancestors.

But as outrageous as the racist comments Trump regularly spewed were, the racially unjust governmental actions his administration took and, in the case of COVID-19, didn't take, impacted millions more — especially Black and Brown people.

To begin to heal and move toward real racial justice, we must address not only the harms of the past four years, but also the harms tracing back to this country's origins. Racism has played an active role in the creation of our systems of education, health care, ownership, and employment, and virtually every other facet of life since this nation's founding.

Our history has shown us that it's not enough to take racist policies off the books if we are going to achieve true justice. Those past policies have structured our society and created deeply-rooted patterns and practices that can only be disrupted and reformed with new policies of similar strength and efficacy. In short, a systemic problem requires a systemic solution. To combat systemic racism, we must pursue systemic equality.

What is Systemic Racism?

A system is a collection of elements that are organized for a common purpose. Racism in America is a system that combines economic, political, and social components. That system specifically disempowers and disenfranchises Black people, while maintaining and expanding implicit and explicit advantages for white people, leading to better opportunities in jobs, education, and housing, and discrimination in the criminal legal system. For example, the country's voting systems empower white voters at the expense of voters of color, resulting in an unequal system of governance in which those communities have little voice and representation, even in policies that directly impact them.

Systemic Equality is a Systemic Solution

In the years ahead, the ACLU will pursue administrative and legislative campaigns targeting the Biden-Harris administration and Congress. We will leverage legal advocacy to dismantle systemic barriers, and will work with our affiliates to change policies nearer to the communities most harmed by these legacies. The goal is to build a nation where every person can achieve their highest potential, unhampered by structural and institutional racism.

To begin, in 2021, we believe the Biden administration and Congress should take the following crucial steps to advance systemic equality:

Voting Rights

The administration must issue an executive order creating a Justice Department lead staff position on voting rights violations in every U.S. Attorney office. We are seeing a flood of unlawful restrictions on voting across the country, and at every level of state and local government. This nationwide problem requires nationwide investigatory and enforcement resources. Even if it requires new training and approval protocols, a new voting rights enforcement program with the participation of all 93 U.S. Attorney offices is the best way to help ensure nationwide enforcement of voting rights laws.

These assistant U.S. attorneys should begin by ensuring that every American in the custody of the Bureau of Prisons who is eligible to vote can vote, and monitor the Census and redistricting process to fight the dilution of voting power in communities of color.

We are also calling on Congress to pass the John Lewis Voting Rights Advancement Act to finally create a fair and equal national voting system, the cause for which John Lewis devoted his life.

Student Debt

Black borrowers pay more than other students for the same degrees, and graduate with an average of $7,400 more in debt than their white peers. In the years following graduation, the debt gap more than triples. Nearly half of Black borrowers will default within 12 years. In other words, for Black Americans, the American dream costs more. Last week, Majority Leader Chuck Schumer and Sen. Elizabeth Warren, along with House Reps. Ayanna Pressley, Maxine Waters, and others, called on President Biden to cancel up to $50,000 in federal student loan debt per borrower.

We couldn't agree more. By forgiving $50,000 of student debt, President Biden can unleash pent up economic potential in Black communities, while relieving them of a burden that forestalls so many hopes and dreams. Black women in particular will benefit from this executive action, as they are proportionately the most indebted group of all Americans.

Postal Banking

In both low and high income majority-Black communities, traditional bank branches are 50 percent more likely to close than in white communities. The result is that nearly 50 percent of Black Americans are unbanked or underbanked, and many pay more than $2,000 in fees associated with subprime financial institutions. Over their lifetime, those fees can add up to as much as two years of annual income for the average Black family.

The U.S. Postal Service can and should meet this crisis by providing competitive, low-cost financial services to help advance economic equality. We call on President Biden to appoint new members to the Postal Board of Governors so that the Post Office can do the work of providing essential services to every American.

Fair Housing

Across the country, millions of people are living in communities of concentrated poverty, including 26 percent of all Black children. The Biden administration should again implement the 2015 Affirmatively Furthering Fair Housing rule, which required localities that receive federal funds for housing to investigate and address barriers to fair housing and patterns or practices that promote bias. In 1980, the average Black person lived in a neighborhood that was 62 percent Black and 31 percent white. By 2010, the average Black person's neighborhood was 48 percent Black and 34 percent white. Reinstating the Obama-era Fair Housing Rule will combat this ongoing segregation and set us on a path to true integration.

Congress should also pass the American Housing and Economic Mobility Act, or a similar measure, to finally redress the legacy of redlining and break down the walls of segregation once and for all.

Broadband Access

To realize broadband's potential to benefit our democracy and connect us to one another, all people in the United States must have equal access and broadband must be made affordable for the most vulnerable. Yet today, 15 percent of American households with school-age children do not have subscriptions to any form of broadband, including one-quarter of Black households (an additional 23 percent of African Americans are “smartphone-only" internet users, meaning they lack traditional home broadband service but do own a smartphone, which is insufficient to attend class, do homework, or apply for a job). The Biden administration, Federal Communications Commission, and Congress must develop and implement plans to increase funding for broadband to expand universal access.

Enhanced, Refundable Child Tax Credits

The United States faces a crisis of child poverty. Seventeen percent of all American children are impoverished — a rate higher than not just peer nations like Canada and the U.K., but Mexico and Russia as well. Currently, more than 50 percent of Black and Latinx children in the U.S. do not qualify for the full benefit, compared to 23 percent of white children, and nearly one in five Black children do not receive any credit at all.

To combat this crisis, President Biden and Congress should enhance the child tax credit and make it fully refundable. If we enhance the child tax credit, we can cut child poverty by 40 percent and instantly lift over 50 percent of Black children out of poverty.

Reparations

We cannot repair harms that we have not fully diagnosed. We must commit to a thorough examination of the impact of the legacy of chattel slavery on racial inequality today. In 2021, Congress must pass H.R. 40, which would establish a commission to study reparations and make recommendations for Black Americans.

The Long View

For the past century, the ACLU has fought for racial justice in legislatures and in courts, including through several landmark Supreme Court cases. While the court has not always ruled in favor of racial justice, incremental wins throughout history have helped to chip away at different forms of racism such as school segregation ( Brown v. Board), racial bias in the criminal legal system (Powell v. Alabama, i.e. the Scottsboro Boys), and marriage inequality (Loving v. Virginia). While these landmark victories initiated necessary reforms, they were only a starting point.

Systemic racism continues to pervade the lives of Black people through voter suppression, lack of financial services, housing discrimination, and other areas. More than anything, doing this work has taught the ACLU that we must fight on every front in order to overcome our country's legacies of racism. That is what our Systemic Equality agenda is all about.

In the weeks ahead, we will both expand on our views of why these campaigns are crucial to systemic equality and signal the path this country must take. We will also dive into our work to build organizing, advocacy, and legal power in the South — a region with a unique history of racial oppression and violence alongside a rich history of antiracist organizing and advocacy. We are committed to four principles throughout this campaign: reconciliation, access, prosperity, and empowerment. We hope that our actions can meet our ambition to, as Dr. King said, lead this nation to live out the true meaning of its creed.

What you can do:
Take the pledge: Systemic Equality Agenda
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Featured image by Shutterstock

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