So how exactly did this all happen?
And more importantly, why on earth would I write about this on the web to share with millions of strangers?
If there’s one thing I’ve learned in the short time since my diagnosis, it’s that hearing other women’s stories, other voices, is so comforting, supportive, and helpful. My hope is that my story might help other women, other couples struggling with infertility and their family and friends. I think part of it to is that, once you learn that you might not ever be able to have your own children, what else have you got to lose?
So the issue at stake, the whole reason I’m even writing this blog, is premature ovarian failure. I plan to devote a couple of posts just to talk about this disease/disorder/medical issue. But if you’ve come here looking for the quick and dirty answer for “what’s wrong with her?” well, there you have it.
Back to the first question: how did this happen?
It’s a complicated tale, at best, a confusing roadmap of symptoms at worst. I’ve tagged this post “TMI,” so it may or may not be work-safe, based on my overly descriptive use of language. I have no shame talking about my medical history, so when you see the TMI tag, you can bet I will be talking about all things vagina.
Let’s start with the basics. I’m 26 and happily married to my high school sweetheart, Larry. We’ve been married for just over a year, and had no plans to even start trying for children for another two years. In September of last year, a strange medical incident and subsequent doctor’s visits brought my fertility issues to light and now we’re making family planning decisions well before I think either of us were really emotionally and developmentally prepared to make.
But my whole story starts well before last September; in fact, it begins on May 21, 1992. I am 9 years old, and it is 4 days before my 10th birthday. It’s a Saturday (yes, I still remember this) and I got my first period. I knew of only 1 other girl in my 5th grade class who had gotten hers. My mom was so happy, and probably a little disturbed at how young I was for my start of menses. I remember being very tired, and generally grossed out by it all.
In 6th grade (1992-93), I had my first migraine headache. It was preceded by a distinct aura in my left eye. This is important for later in the story.
For most of middle school, my periods were pretty regular, like clockwork. My mom tells me this, b/c I remember them more as they were in high school. First it was every 30 days. Then every 35, then every 40 to 45 days. They became longer, heavier, and physically draining sometimes. I just assumed this is how they should be. I would get migraines with auras from time to time.
At 15, I met Larry. We dated all throughout sophomore and junior year of high school, and broke up shortly before our senior year of high school. It was a tumultuous, passionate teenage romance.
When I turned 18 (2000), I went to my first GYN appointment. I felt strangely grown-up by this. In August of that year, I had a sharp pain in my abdomen, causing me to double-over and vomit. The memory is a bit fuzzy, but essentially, I had an ultrasound that determined I had an ovarian cyst that ruptured. My GYN diagnosed me with polycystic ovarian syndrome (PCOS) and put me on birth control in an effort to manage my cysts.
In September 2000, Larry and I got back together, now freshmen in college. Over Thanksgiving weekend, I thought perhaps I had food poisoning: chills, vomiting, stomach pain. As the weekend progressed, so did my pain, and it became more localized to my left lower abdomen. I was rushed to the ER twice; both times, inconclusive. Finally, my GYN ordered an exploratory laproscopy, and they found a torsioned ovarian cyst. Essentially, one of my cysts had grown to the size of an orange and torqued around my ovary, choking off its blood supply. The pain was essentially that of my ovary dying inside my own body. My left ovary was removed, and I remained in the hospital for about 3 days. I was out of school for about a month. They continued to keep me on birth control.
In college, I struggled with depression and anxiety disorder, and was diagnosed with hypothyroidism (which, often goes hand in hand with PCOS). I was put on thyroid medication. In four years of college, I gained almost 30 pounds, despite being fairly active. I chalked it up to my thyroid.
Larry and I were still going strong when we graduated college in 2004 and moved in together while he completed grad school. In the last 5 years, I’ve gained another 30 pounds. While not nearly as active as I was in college, at lot of the weight gain seemed to be beyond my control. In 2006, we got engaged. When Larry graduated with his MFA the next year, he got a fantastic job offer that required a huge multi-state move for us. After the move, I skipped a period. And then two. And then a third missed. (Cue the pregnancy test after test that came up negative.) I didn’t have a period for 7 months even though I was on birth control- no spotting, nothing. I chalked it up to the stress of the move and my new job, and when I finally went to a doctor, she gave me a prescription for a birth control with a higher level of estrogen, since apparently I just didn’t have enough in my system to produce a uterine lining. After a few months of this new dose, my period came back like normal.
In January 2008, Larry and I got married. It was such an incredible day.
In September 2008, the day before I was supposed to start a new job, I essentially collapsed after going out to dinner with my husband. I was disoriented, nauseous, and started having numbness along the left side of my body, particularly my face. I was rushed to the ER where they began stroke protocol. After many blood tests and an MRI, they couldn’t conclusively determine what actually happened. It wasn’t a stroke, in fact, all stroke testing came back with a clean bill of health. Officially, my discharge sheet said “dizziness.” Unofficially, the ER neurologist and my doctor suspected a migraine with neurological presentation only, and w/o my usual aura.
The following month, my doctor ordered me off the birth control, due to a contraindication between neurological migraines and hormonal birth control. Given my recent episode, she just didn’t want to take any risks. I took my last pill on 12/20/08. I had a normal period (normal in the sense of how my periods have been while on the pill) from 12/24-12/28/08. December 24th is considered Cycle Day (CD) 1.
I am on CD 97. My period never returned. On CD 76, I went to my primary care physician (PCP) out of concern. She recommended I see Dr. Gross, a GYN and PCOS specialist in their practice. On CD81, I saw Dr. Gross, who ordered a whole battery of blood work. On Wednesday, March 18, 2009, Dr. Gross emailed me the news that has changed my life: I have premature ovarian failure.
This is where this whole new story, this new chapter, this new terrifying journey- begins.
