Living with PCOS
By: Onehijere Ojo
Tags: Womens Health, Pcos Awareness, Reproductive Health

The first time I heard of PCOS was about a year before I got diagnosed, being very interested in reproductive health and issues concerning women I had attempted to read up on it but everything seemed so vague, it wasn’t extremely talked about so I thought “hmm I guess it’s rare and not that bad” lol, so I thought.

I began experiencing amenorrhea September 2018, I wasn’t sexually active, I was dealing with alot of school stress so I waved it off. Fast forward to January 2019, I started experiencing severe abdominopelvic pain. It was sudden, sharp and crippling. I couldn’t function, I could barely eat and sleep was a myth. I would spend my entire night on my knees, rolling in pain and in tears, by morning I would be drained and I’ll chug down copious amounts of caffeine just so I could function, painkillers were my best friend but that didn’t last long as they quickly became ineffective. Hospital visits comprised of male doctors asking “are you sexually active?” “tell that your boyfriend to take it easy oh” and insisting on pregnancy tests, none offering actual help. One concluded it was stress and mittelschmerz and I grudgingly went with that but being very in tune with my body, I knew it was far from that. 2 months later, in March (still amenorrheic) I was back at the hospital and insistent on a pelvic scan. I had done a lot of research and self-diagnosis so I was 95% sure the scan would show an ovarian cyst. I was wrong, the scan showed 2 ovarian cysts and an enlarged ovary with numerous follicles surrounding it- indicative of Polycystic Ovarian Syndrome.

I remember my heart breaking in that moment, I remember the tears building up in my eyes while I forced myself to put on my “hard guy” suit, I remember immediately thinking I would die in surgery.

The months following my diagnosis were hell, but somehow they were freeing, freeing because I finally knew what was going on, doctors had convinced me that I was crazy and it was all in my head so it was somewhat freeing knowing I was right- I wasn’t losing my mind, I wasn’t crazy, it wasn’t all in my head, something was wrong with me and now I could focus on dealing with it and getting better for me.

I like to think that I was “favored” as I didn’t experience a lot of the other symptoms: hirsutism, acne, and most importantly infertility. Being a person who has always wanted kids, the first thing I did was a hormonal assay and I was expecting the worst but somehow, things worked in my favor in that aspect and my fertility was intact. I experienced severe anxiety and depression, high blood pressure, sleep apnea and weight gain along with the menstrual irregularities and severe pain the ovarian cysts were causing.

I was going to need surgery to take out the 2 ovarian cysts but my doctor made it known to me that the cysts were seated in a dangerous position and I could risk losing an ovary so I was put on birth control which would regularize my cycle and could also help dissolve the cysts (even though they could always reappear) or eventually I would have no choice but to have the surgery. Again, I was favored as both cysts eventually dissolved and now I have to deal with just PCOS (yay!)

Living with PCOS is an emotional rollercoaster, on most days I don’t want to be alive, I don’t want to live in fear of having diabetes, I don’t want to have to gain so much weight just by breathing in air, I don’t want to have to cut out so many things from my diet, I don’t want to have to deal with my hair thinning and having such weak unhealthy hair, I don’t want to have to have a whole ass lifestyle change just to live peacefully, I don’t want to have to deal with extremely painful periods that leave me unable to function, I don’t want to deal with the constant fatigue and exhaustion, I don’t want to deal with the random, persistent waves of sadness, I don’t want to have to deal with all that it brings.

I hate being tortured by my body, I hate knowing that if I do this and eat that this month I am most likely not getting my period or I would get an extremely painful and long one, I hate that my body is playing a guessing game with me, I hate waking up sad, miserable and apathetic for no reason, I hate having to be seen as “bad vibes” because I’m mostly in a weird funk I can’t get myself out of, I hate the sympathy and that face people have on when they find out all that I’m going through (kinda like the face you have on now) and I am sick of having to explain something I don’t fully understand myself to people.

Less than 50 percent of women are properly diagnosed, leaving millions of women living with PCOS undiagnosed and probably thinking they are crazy. I hope that we create a safe space for women dealing and living with reproductive health issues to talk about them freely and without stigma.

PCOS has greatly reduced the quality of my life and affected so many of my friendships as I did not have the mental bandwidth to cater to myself let alone to others, especially in the first few months following my diagnosis. I will probably always have to deal with the physical and emotional challenges it brings so I’m learning to take each day as it comes, to feel the emotions but to not (always) let them overpower me. I can only hope that it doesn’t get worse and I am able to deal with it for as long as I have to and that one day I would come to love my body in the state that it’s in, but today is not that day.

To learn more about PCOS: https://www.pcosaa.org/overview