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5 Women Share Their Experiences Living With PCOS

Over the past several years, women's reproductive health and overall wellness have become increasingly prominent topics of discussion. This isn't merely a passing trend; rather, it stems from many questions women have had about their bodies. As girls transition into women, we learn about periods, managing our menstrual cycles, and contraception. However, what we often lack is guidance on navigating the eb and flow of our hormones, understanding their implications, and acknowledging the role of race and heredity in our bodies' functioning. Others might have been aware, but I certainly wasn't. 

women holding pearls

At 19, I scheduled my first gynecologist appointment due to an extremely irregular menstrual cycle. While some might dream of having their period only twice a year, for me, it raised concerns. During the appointment, my doctor dismissed my worries and simply advised me to take birth control pills, assuring me everything would be fine.


At that time, I lacked the knowledge and confidence to advocate for myself. However, my experiences within the healthcare system over the years forced me to learn to speak up and demand answers when necessary. Three years later, on a fall day, what I thought was the beginning of my period turned into a heavy flow that didn't cease even after seventeen days.


Living on campus at the time, not far from home, I drove 50 minutes to my cousin's house, who happened to be a nurse practitioner. I begged for her help and she took me to her job. After enduring hours of examinations and shedding tears in the emergency room at the hospital where my cousin worked, I received a diagnosis: polycystic ovarian syndrome (PCOS). The relentless bleeding was caused by having multiple cysts on both of my ovaries, with one of them having ruptured. Amidst my confusion, I craved understanding, but all I received was a diagnosis, medication to stop the bleeding, and a hospital bill equivalent to in-state tuition. Luckily, our contributor, Dr. Charlsie Celestine, MD, a board certified OB/Gyn has given us an overview of Understanding PCOS already so your journey can be easier than mine. 


This marked the beginning of my journey with PCOS and the discovery of my body's intricacies. Given the unconventional nature of my health journey, I felt compelled to seek out other women who have PCOS and learn about their experiences. I connected with five women who were gracious enough to share their stories and journey of living with PCOS with the Adaaba community, incase you are like us women who needed answers.  

Camille V., 30

I experienced consistent pain in my pelvic area when i was 19. I had to force the doctors to do a scan, which revealed over 20 small cysts on my ovaries. All they did that day was prescribe me birth control. At the time, not much information was available, and the doctor told me this could mean I might be infertile, which sent me into a spiral. It wasn’t until five or so years later that I started to uncover more info about PCOS beyond what my doctors provided. To be honest, I’ve had a horrible experience with regular healthcare. PCOS is not just “take birth control and lose weight.” It’s about understanding your hormone levels and what is contributing to your hormone imbalance and creating a system that works for you. Everyone with PCOS is different in their hormones and symptoms, as I’ve learned.

I’m lucky to have found a service called Allara, which pairs you with an OBGYN and a registered dietician. I am finally getting the bloodwork and scans needed to manage my PCOS. My best advice is to not give up and don’t accept the bare minimum from doctors. The reality is that most of them are not trained on PCOS or have limited knowledge.

Also, don’t blindly follow PCOS influencers. Find a doctor who will order bloodwork to test your hormones and blood sugars, and then find a registered Dietician that specializes in PCOS. It can be difficult to get people to understand the changes you need to make in order to feel okay, such as getting a lot of sleep, limiting certain things (like sugars, processed foods, and alcohol), and needing to work out to manage symptoms. Supplements that have been helping include Ovasitol (an inositol supplement) twice a day with meals to help with insulin resistance, prenatal vitamins, fish oil, and turmeric (for inflammation) every morning with breakfast. I have also started incorporating fiber supplements to help with blood sugars.

Additionally, stress management has been big component for me as I naturally create high testosterone, and stress only fuels it. It’s also an “invisible illness,” so some people may assume you’re making things up or just don’t want to do things when you genuinely cannot for your own well-being.

Sharen S., 31, from Chattanooga, TN

No one was giving me the proper answers. At the age of 27, I started consistently asking my doctor questions because I felt like something just wasn't right. I would either get half answers or my concerns were brushed off. Transparently speaking, when I was first diagnosed, I did not fully believe I had PCOS; I felt like there had to be more issues. So, I continued to push for more tests. I spoke to my primary care doctor about blood tests since I did not have access to an endocrinologist. Now that I have had more questions answered, I still ask questions and make note of everything but also do my own research as well.

What’s been helping is being consistent with how I eat. I have made major changes over the last few years, but there are times when it can be hard to keep up. I hate being looked at as the picky person when in reality I just want to be careful with what I'm consuming. What helps is raspberry leaf tea! I am still working on incorporating more supplements that I have read about. It's still a work in progress for me.

The biggest advice I would give others is to ALWAYS ASK QUESTIONS, get a second opinion, and never beat yourself up! You are your biggest advocate, so make sure you ask doctors to do all the necessary testing to make sure nothing is missed. What I know now, I try to share with my nieces: be mindful of what you're eating, and if something feels off, do not assume it's normal—talk to someone about it. I am way past puberty; however, I am working on the steps to creating a healthy environment in my womb so that when I decide to become a mother, PCOS will not affect that. I am always seeking knowledge about how PCOS affects more than just your reproductive system, and I hope more research comes out about it in the future.

Marrisa M., 32, in Phoenix, AZ

I’m currently 32 and was just recently diagnosed with PCOS. What pushed me to go to the doctor was not only my irregular periods of 40-65 days but also a year of trying to conceive with my husband without success. Yes, I have struggled emotionally and mentally since being diagnosed.

It feels like PCOS has taken over my life. It is stressful trying to keep a healthy schedule with balanced meals, not stressing about not having a regular cycle while my hormones are out of balance. I find myself fatigued every day despite getting a full night of rest. Balancing family and social life is easier for me because my husband and I recently relocated, so it’s just us here, which makes it manageable. I work in hospice as a medical social worker, which constantly reminds me how short life can be.

As a black woman, I have to demand tests, medications, and simply to be heard. I am constantly questioned and given the runaround about getting answers, but my money for doctors' appointments is always accepted. Don’t allow a provider to make you feel like you don’t know your body, advocate for yourself, and seek a second opinion if needed.

I know they mean well, but it does not make me feel any better. My biggest struggle is managing my emotions as friends become pregnant who are not trying and continue to give unsolicited advice that I have already tried. I will be starting therapy again because I realize how much of a toll this takes on me. I also have a supportive husband who is going through this process of trying to conceive with PCOS with me. I use the gym to promote mental health and decrease symptoms of depression. Lastly, I have a supportive community of women who help keep me anchored in my faith and trust in God that he will grant me the desire of my heart.

Shawnt’a B., 33, in Atlanta, GA

I didn’t have a good relationship with my mother, so I never discussed what was going on. I was diagnosed with PCOS in my early 20s. Around 10th grade, I stopped having monthly periods. Since I was not sexually active, it never really occurred to me what was going on with my body until about age 20 or 21 when I started having unprotected sex and realized I could not get pregnant and was experiencing constant pain and cramps without having a monthly period. That’s when I decided to see an OBGYN.

Even when I was diagnosed, I still did not have a good OBGYN to explain what my body was experiencing, so I spent years on an emotional roller coaster until I recently learned more information that would benefit me and my body.

I cope by talking to my husband, my sister, and my friends. They’ve also been a huge part of my PCOS journey. They allow me to talk with them about what I may be feeling that day, especially when it comes to the infertility of PCOS and not being able to currently conceive. I know my baby day is coming (all in God’s time). I honestly have to constantly tell healthcare providers what my symptoms are and what I’m experiencing. After seeing multiple OBGYN doctors, I met the first doctor who helped me and understood me (a black woman) when I was about 29, and she told me a lot about my body, which opened up many more conversations.

Do not to settle for just any healthcare provider, keep searching until you find someone willing to help you.

Sohnin R., 35, in Greenville, NC

I noticed my menstrual cycles started to become more and more nonexistent at the age of 28. I went to the doctor and was diagnosed with PCOS. One of my biggest challenges is that I’m hard on myself; as a woman, I feel broken. Currently, I’ve noticed I’m more withdrawn from my family and sometimes unable to focus on work.

I’ve struggled because of the thought of not being able to have kids or finding it difficult to have children. Currently, I cope by journaling my thoughts and feelings and using music to cope with some of those feelings. I’ve been trying to be more proactive with my health because I like to be educated. When visiting my doctor, I write my questions down and go through them. I look for healthy alternatives other than just being put on medications that have not proven to work in my case. I also research healthier ways to tackle PCOS and ways to boost reproductive health.

I’ve also joined groups with other women who have the same issues. One of the main things I’ve learned and would like to share with other women who have PCOS is to focus on your sugar intake. One issue I found is that a lot of sugar can affect your overall health. Focus on a healthy diet. Find what works for you, such as supplements and vitamins, because each woman’s case and body is different.

You may have read these women's stories and felt either empowered or scared, but ultimately you all may have the same question of, what next? Here are some resources that may help you with getting more information and making a decision on your next steps.

The National Institute for Child Health and Human Development has a page of resources you can find here, that share other must knows for patients and researchers.

And if looking for a personalized healthcare experience, consider Allara Health which was made with PCOS women in mind offering services that addresses nutrition, lifestyle, and medication if appropriate.

Do not forget to also listen to your body and advocate for yourself.

DISCLAIMER: Features published by Adaaba are not intended to treat, diagnose, cure or prevent any disease. Always seek the advice of your GP or another qualified healthcare provider for any questions you have regarding a medical condition, and before undertaking any diet, exercise or other health-related programme.

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