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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

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