I met Monica last year through a brave email she sent me.
It started: “My name is Monica Allan from Orange County, CA. I stumbled on your blog while tirelessly searching for comfort, answers, or basically anything about infertility. I simply just wanted to thank you from the bottom of my heart for sharing your life on your blog. It is simply beautiful. My husband and I are also dealing with infertility, PCOS, and a body that basically cannot communicate (mine)… I know you have no idea who I am but you have touched my heart and sparked a hope within me that I will need…”
And that Monica is the girl you will meet in today’s piece. (What a fun full circle moment – she will now have the chance to touch others on this platform!) She is kind and honest, and digs in deep to share what it’s like to go through PCOS. Monica, thank you for reaching out when you did and being willing to share your story with us today.
Here’s what it’s like to have PCOS.
I grow cysts, really well. That is what I have learned since a young 12 year old girl, loosing my right ovary to an ovarian cyst that caused my right ovary to twist. Little did I know as a young girl that these cysts would persist and bring so much heartache into my marriage that I so effortlessly assumed would be nothing short of the storybook fairy tale I had dreamt of; marriage, pregnancy, creating a nursery, and happily ever after without soul crushing diagnoses and heartbreaking realities. If I could, I would tell my 12 year old self to buckle up and become an advocate for myself and my only precious ovary.
4 years ago I was told I had a diagnosis of PCOS when the doctor found another ovarian cyst. I felt confused, I thought I had already climbed this mountain at a young age and would be in the clear to start my dreams of motherhood once I got married- at least that is what the fairy tale books tell us, right? You overcome a struggle and things become sparkly and fairy tale like. Sadly, this is not the reality of many of us in the infertility community. Instead, I was hit with continuous cysts, rapidly growing, non-existent periods, the occasional chin hair (although what girl doesn’t get this, let’s keep it real), and seasons of deep depression and anxiety.
PCOS (polycystic ovarian syndrome) is a well-known diagnosis within the infertility community. But what each person goes through, presenting symptoms, PCOS is so unique and individualized. Something I have learned over the past 4 years is to advocate for my future family, my future babies, and myself -wrapped up in one precious but strained ovary. I had to seek answers, doctors throw PCOS around like it is “normal”, but 4 years ago, to me, it was not written in my fairy tale book. I had to accept PCOS being written in my fairy tale, and learn how to not allow it to dictate the happy ending. I wish I could tell all of you that over the past 4 years I have overcome and fertility treatments have worked, but sadly I can’t. What I can say is that due to PCOS being so unique to each woman, you can’t lose hope- you have to tighten up your boot straps and not give up on understanding your body, how to writer your fairy tale regardless of diagnoses and obstacles.
My fairy tale is still unfolding. My husband and I have attempted to begin 3 IUI’s, but at each baseline appointment our fertility doctor finds another cyst growing so we are stopped in our hopeful tracks and I find myself back on the surgery table, begging doctors to save my ovary so I can experience my fairy tale. After 3 surgeries in 3 months (5 total) and doctors reminding me of the devastating high possibility of losing my ovary because the cysts get so large before each surgery we have encountered the rarity and depths of the realities of PCOS.
Finally, just 2 weeks ago, my husband and I were told by my surgeon that due to the cysts reoccurring so often and being unable to control the growth that my only ovary needs to be removed. Also, on June 28, 2018 we were given the opportunity to attempt and retrieve eggs, though many obstacles stand in our way (such as a large growing cyst) we rejoice in the opportunity to freeze embryos before the removal of my ovary. Small miracles do exist written in the pages of our fairy tales, faithfully pursue them.
Now, before you become overwhelmed – this is VERY rare for PCOS diagnosis. In addition, over the past 4 months my husband and I have come to a place of peace that we have done everything in our power to save my ovary, literally begging doctors to save it while going under anesthesia for surgeries, and blindly beginning stimulation to retrieve eggs. My hope for all of you reading this is that you find your armor, to advocate for yourself and go down fighting for your fairy tale. PCOS does not have to rule or dictate your happiness. There is so much joy and hope in this world. People with PCOS may have to rely on faith and science to become pregnant, but it does happen! Each of us are so uniquely and wonderfully made, fight for yourself. Ask the difficult questions to your doctor. And most importantly, always remember this diagnosis does not have to consume you, we are more than depression, hairy chins, and cystic ovaries. I have worked hard the past year, through going to therapy and leaning on my faith in God to identify myself not as “the girl with PCOS” but as a child of a faithful God, a wife, a sister, a friend, and a fighter. My “cysters” out there; you are warriors, fighters, and overcomers (even if you simply just got out of bed today) keep up the fight. Fairy tales do happen, mine is currently unfolding, just differently than I thought as a child and because my fairy tale has been anything but simple, I have found a new part of myself I never knew existed. The fighter. The advocate. The strength to live with a diagnosis of PCOS that has stolen so much from me, but daily choosing to find joy in how strong I have become due to this difficult, heart breaking, fearful road.
Monica lives in Orange County with her husband Aj who have been married since 2016. Monica is learning to embrace the uniqueness of each infertility story and desires to connect with other women who can share in their journey towards parenthood with the help of lost of faith and science. She loves Jeep rides, cooking, and Jesus. You can connect with her further on Instagram at @lotsoffaithandscience.
PS – Don’t miss a thing with this series! Follow along on Facebook and Instagram to catch each of the upcoming stories! I absolutely LOVE connecting with each of you!
PPS – If you’re ever looking for a devotional on living life while in a waiting season, check out the devotional I co-authored called ‘In the Wait’!
PPPS – Check out the other contributions from this series, including What It’s Like: to experience multiple IVF cycles, raise a child with special needs, use an egg donor, be a DIY-er and home style blogger , be a NICU nurse, Live fully in singleness while still hoping for marriage, suffer with endometriosis. experience depression, start a company, have a micro preemie, lose a parent, be childless not by choice, have a spouse with a chronic illness, fund raise for fertility treatments, have a traumatic birthing experience, take a natural route with infertility, be on a reality show, go through the adoption process, have male factor infertility,be a stay at home mom, be an entertainer, be given a Down syndrome diagnosis for your child , experience multiple miscarriages, have a surrogate, experience a late pregnancy stillbirth, be a police officers wife, be a working mom , be a breastfeeding mother,have weight loss surgery, donate and adopt an embryo, be on a reality show, and go through the fostering process.Stay tuned for many other amazing topics to come every Tuesday and Friday here!
8 thoughts on “what it’s like to: have PCOS.”
This story really touched my heart and rang close to home. I’m so sorry that you (Monica) have gone through all of this. I too have had 5 surgeries and have lived with one ovary for the past 14 years. Like you, I’ve had to beg doctors at every turn to leave my one remaining precious ovary alone, and I live in the unfortunate perpetual understanding that it could one day easily be taken away and I’d lose all opportunities to have children. It’s something unique that so few women I know of have experienced and I’m so sorry that you know this reality all too well. I admire your courageous faith in the Lord throughout this ordeal.
Well that touches my heart. You are so right, very few people can identify with many parts of my story. And I am so sorry that you can! I appreciate your words so much. The fears can be crippling at times, and sadness overwhelming but my faith in God continues to help me know that Hos story is still being written. Thank you for taking the time to care about part of my story, and God bless you! Keep advocating for your ovary! Xo, Monica