Amanda’s Story
Finding Hope Through the Diagnosis: PCOS
Twenty years...
September 2018 marks 20 years since my surgery.
I was 12.
The emergency operation removed an ovary and fallopian tube and my appendix for good measure. It was because of Polycystic Ovarian Syndrome (PCOS).
It has changed the terms of my life in so many ways - emotionally and physically. If I am being honest, it’s still dictating my life. Still being honest....I am just coming to peace with it. (Like while writing this...)
The Long and Short of It
In September 1998, I woke up one morning with excruciating pelvic pain.
lived in Treasure Cay, Abaco then, and the local doctor could only see from the blood tests, that my white blood count was elevated. Without the necessary infrastructure and equipment, I had to be flown to Nassau.
My dad and I arrived at Doctor’s Hospital where they ran more tests, did an ultrasound, and admitted me for exploratory surgery (laparoscopy). Looking back I can see God’s divine intervention in so many ways. My surgery was scheduled for 12 noon but was moved up to 6am at the last minute.
A life saving move.
It turns out the cyst had caused my ovary to flip (torsion) and it was dead. It also burst my fallopian tube. I had been bleeding internally for 3 days and it was about to turn toxic.
If they had waited until 12 noon for the surgery, I wouldn’t be alive.
In the same go, my dad asked for my appendix to be removed. He didn’t want to go through this again. The scene inside had also made the doctors over cautious and they wanted to remove both ovaries just in case, but he didn’t consent. He knew I wanted to be a mom one day (thankful everyday for his wisdom then).
The official diagnosis of PCOS came at 17. The doctor’s only solution at the time was to, “Have a baby early.” That was the last time I saw that doctor.
From ages 12 - 32 (now) the after effects still linger. No one quite prepares you for recovery. Physically or emotionally.
Teenage years were filled with scares of there being more cysts, birth control pills that didn’t work, emotional trauma that went unnoticed, along with anger. Mostly toward God and myself. Adulthood has been filled with healing, learning and finding joy (which is not as easy as it sounds here).
Snapshot of the Aftermath
Emotionally the trauma ran deep -
1. I held on to the hurt and yes, wanted revenge against the new ninth grade PE teacher who made us do a boot camp session. I got the the pain a couple days later. I just forgave her three years ago - when a bout of fear of approaching 30 - not married - no kids - had me mentally paralyzed. (Grateful to Dr Susan Wallace in Freeport, a true general in the Kingdom and a deliverer).
2. I struggled with finding my value. Who was I as a woman, with the possibility of not having kids? Did that make me less of a woman? Who would want me? Why did this happen to me? I didn’t choose this? This manifested into poor choices in men - whole other story there. (Thank God for Jesus)
3. I struggle (seriously still today) with the frustration of managing my health and not quite having the right mix of medication, exercise, food, supplements and miracle. It is trial and error and though I am two decades in, I still haven’t figured it out. It sucks. And in the weak moments I question why God trusted me with this battle.
And then the physical side (ugh)
I write this because this year has been filled with health challenges.
The surgery cut through my core, that led to some back issues, especially prevalent in the past five years. I am now eating only veggies and seafood / fish thanks to some serious digestive issues. And while it took a long time to make the full switch, truthfully I am loving it (thanks Cleo Mediterranean for amazing brussel sprouts).
I have had a range of issues from hair falling out and early grays, to a serious magnesium deficiency that affected my nerves (all healed up now). When I turned 32 this past April, I didn’t get to think about what I wanted this year to look like because I was ill. I write this now with a pain in my left pelvis, which thankfully is not a cyst (I went to the doctor this morning).
I take magnesium and Vitamin D supplements, fish oil and a good multi-vitamin. I am gluten free, carb free, sugar free, dairy free (don’t mind my occasional chocolate cake, a girls gotta live sometimes). And I am praying that next year doesn’t take me to raw vegan *face palm*. Even still, the weight hasn’t come off and I am at Baha Retreat every two weeks for sugaring unwanted hair.
The hormonal imbalance also affects my mind and I battle on and off bouts of depression, fatigue and general apathy for life.
I was fortunate on this journey to encounter two amazing doctors in the US (Dr. James Joyner and Dr. Michael Freeman). Through them I was prescribed Metformin, when it was still experimental for PCOS, which has helped me significantly. And yes, I was sick every week for at least a year, and yes, there are many side effects but for me it works.
Freedom in Sharing
The point of Stories of Hope is to share stories so that the collective “we” know that we are not alone.
We are not alone in life. It truly is community.
When Gia and I were creating Stories of Hope, someone I was meeting with shared that their family member had just had their ovary removed for PCOS - it awoke a deeply buried part of me. I hadn’t shared that part of my story for such a long time. I was living in denial. At that point I hadn’t googled PCOS or looked up new treatments in years.
It was a catalyst to check myself and my health again and face it head on. And also, to write this post, and accept that this is my story and maybe it can help someone.
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Coming Up:
Part Two: Recovery is a Beautiful and Painful Process
Amanda’s Bio:
Amanda is Co-Founder of Stories of Hope. She works in institutional philanthropy, has a heart for God and is passionately fulfilling her purpose.
