I said I have PCOS
As a child, I used to run through my apartment building in Brooklyn, New York with a towel wrapped around my head. I pretended to have long beautiful Disney princess hair, like Princess Jasmine from Aladdin. They don't tell you one of the potential symptoms is losing clumps of your hair when you’re diagnosed with PCOS, which is precisely what happened to me. I know it may sound so vain or insignificant to some, but losing my hair was a visual or physical manifestation that there was something wrong with my “womanhood.”
I was first diagnosed around the age of 21 or 22 with Polycystic Ovarian Syndrome. I had missed my period, but I didn't think much of it. I assumed my cycle was changing. I missed another period. I went to my primary care physician. I explained to him what was happening and that I felt my energy was very low. Besides the missed periods, I just didn’t feel like myself. He advised me to go see a gynecologist immediately. I was in love at the time and thought there could be a possibility that I was pregnant. I was mentally preparing myself for that news. How was I going to break the news to my partner? How was I going to share this with my family? I knew the news I was about to receive would be life-changing.
I didn't expect to hear from the nurse practitioner, “You have multiple fluid-filled sacs around your ovaries. It is something that can be managed, but it is not curable.” I was prescribed birth control and metformin, a diabetic medication. They said I wasn't diabetic, but it would help my insulin resistance. I remember taking the medication as prescribed. I had this persistent nausea. It would not go away, despite my best efforts to alleviate it. It was so hard to concentrate because of the intensity of it. I gave it about 2 weeks because I figured my body needed to adjust to all the new medication. From that point on, it led to months and years of changing doses, medications, in search of the right fit for me. I had experienced various side effects between nausea, leg cramping, mood swings, and on one of the birth controls, I bled for about a month and a half. I was miserable.
My partner was incredibly aware and in tune that I did not feel like my normal self. However, I would tell him that I was fine. It took a few months for me to build the courage to share with him about my condition. I felt completely embarrassed and awkward having to share that information. It was a beautiful sunny day, and he took me to a rooftop in Downtown Manhattan. He wanted me to share whatever weighed on my heart in the presence of a spectacular view. I said I have PCOS. He said what does that mean? I listed the host of symptoms that could potentially happen with having PCOS. The information I shared with him was information I independently found because I was not educated on my condition when I was diagnosed in my doctor’s office, other than describing physically what PCOS looks like, how the cysts form, that it causes insulin resistance, it’s incurable, and that I have to lose weight, which may have been caused by the PCOS in the first place. My partner and I were having discussions about having children at the time, so I told him it could lead to difficulty in conceiving or infertility. He just looked at me with so much compassion and gave me the biggest hug.
I was grateful to have a kind and loving partner. However, it didn’t stop me from spiraling into having full-blown panic attacks and severe anxiety. It’s funny how the physical symptoms of PCOS are listed when you do a quick google search (which I can easily check off experiencing each one of those symptoms), but it doesn’t list the mental ramifications of having the condition. I felt like I was not good enough as a woman to be with the love of my life at the time. It was one of those “it’s me, not you” moments in our relationship.
I was fed up with taking medications that just tacked on symptoms that were not necessary, like the nausea. I decided to stop taking medications altogether. I was sad, angry, frustrated, and felt lonely. I didn’t know at the time that 5 million women in the U.S. are affected by PCOS. It meant that there were 5 million of us, dealing with possible fertility issues, weight gain, skin “imperfections”, hirsutism, and hair thinning (Goodbye, Princess Jasmine hair!), and not to mention the major blow to our self-esteem. I know my self-esteem took a major hit!
There were days I would call out from work because of my “flare-ups” from my PCOS symptoms. I would have really bad inflammation in my body. There were occasions where I would get a period, but it was so heavy and painful that I felt I was having the life sucked out of me. People would comment on how puffy/ swollen or pale I looked. It almost became routine, my spirit was broken, and I accepted it as a way of life.
Until one day, I went to a female empowerment workshop and two of the speakers started talking about the Yoni. Yoni is a Sanskrit word referring to our female genitalia, and it means sacred space. They started to educate us about the yoni and our womb space. It had never occurred to me until that moment that I had never thought about my womb space until I was diagnosed with PCOS, and it was far from a loving manner. The speaker began to talk about ancient practices like Yoni steaming, which is the practice of boiling herbs in water and allowing the steam to rise into your sacred space. There was technology like Yoni eggs that were mentioned, which are egg-shaped crystals that a woman would insert into her vagina. Something stood out to me when she said it’s a womb to womb connection. “The crystals have healing properties and come from the womb of the earth, Mother Nature, and is inserted into the Yoni for your healing.” It resonated with me because in the midst of the random panic attacks I would experience, I would find my way to a park. There was something so soothing about feeling the sun against my face, the wind against my back, listening to the bird's chirp, and being completely immersed in nature. It was a sacred healing space for my mind and heart. And so, I believe in nature’s healing abilities for my sacred womb space.
I am so grateful for that transformative experience. My story is not a success story (yet) in reversing my PCOS, but it is one filled with light, hope, and a renewed love for myself. I started asking myself questions like what makes me a woman, other than my physical attributes? How can I rebuild a relationship with my Yoni or sacred space? What is my body trying to tell me? What is my Yoni trying to tell me? How can I show myself the compassion and love that I deserve? What are other practices or techniques that were used by our great great grandmothers for their reproductive care? What knowledge has been lost to us? What are some other techniques, stories, and information out there that can be helpful in better caring for our beautiful and amazing anatomy?
These questions are helping me build a better relationship with myself, to empower and educate myself, and to familiarize myself with my body. I have gained back my sense of self, my mind, and spirit. I am confident that I will be able to gain back my body too. I look forward to that day. I look forward to sharing that kind of life-changing news. Now, I tell that little girl that used to run around her Brooklyn apartment with the towel wrapped around her head to not settle in trying to be a Disney princess when she is a living goddess of divine love, beauty, and grace. In fact, we all are and try your best to never forget that.
