Sunday, May 31, 2015

Infertility: My Story

This is a post that I have been meaning to write for many years. But, I have struggled with where to start telling my story from and when to share it. Not to mention, it's still considered a taboo subject in today's society. Just so that we are clear, I'm not looking for pity or sympathy. I'm sharing my story in hopes that it may a) help someone who might be in a similar situation and show them that they are not alone, and b) spread the word and show people that it's OK to talk about infertility. Fitting, since this years National Infertility Awareness Week theme was "You Are Not Alone."

February 2015, marked the 10 year anniversary of my diagnosis. I have Premature Ovarian Failure (POF). In layman's terms, it means that my ovaries don't work. They never have and more than likely never will. Some people may argue that the technical term is "Premature Ovarian Insufficiency (POI)." It sounds less harsh and actually describes some people better. But in my case, it's full failure. It's a fact and I have grown to accept it [most days].

I first knew that something wasn't quite right in middle school. By the 8th grade, everyone, except for me, had joined the puberty club. As if being a 13-14 year old wasn't awkward enough, add on being one of the only 2 Asian girls in the class (we lived in a small, Caucasian, Christian-Catholic, mostly farming community), AND being the odd girl out elevated the beginning of my teens years to a whole different level. I may not remember the meanest thing someone said to me, but I remember the stupidest comment: "You are flatter than my doorknob." Ugh. Middle school boys are such fucking assholes. BTW, I still remember who said it. I remember his full name and the month/year of his birthday. Watch your back, karma is a bitch. Anyways, life sucked. And I chalked it up to just being a "late bloomer" and most likely it was because I didn't have enough body fat. I was skin and bones as a child, just skin and bones. Looking back now, I have no idea why I didn't just buy a bra and stuff it like some of the other girls. *sigh*

5th or 6th grade, I think. Apparently my love for orange and black started long before college.
8th grade. Could that shirt be any bigger?

High school came and went and still I hadn't joined the club. I don't remember my classmates saying anything, at least not to my face, but I was very self conscious. My baggy clothes phase from middle school carried into high school (as much as I could get by with our strict dress code). By this time I had read all that I could read on delayed puberty. I had taught myself about Amenorrhea and the treatment for it. At the ripe age of 19, my parents took me to see the family doctor. It was no surprise [to me] when they diagnosed me with Primary Amenorrhea (never having menses) and promptly put me on birth control pills. While I wished that my parents had taken me to a specialist, my family practitioner did run every test they knew to. Everything came back normal, including my karyotype. The doctor had hoped that medical retardation (Turner's Syndrome, Fragile X, etc.) would explain it. Sorry to disappoint, doc. 

Junior or Senior year of high school. I still hunch my shoulders like that. Bad habits are hard to break.

College was almost everything I dreamed it would be. I was like everyone else, mostly. My friends looked past the fact that I looked like a child. My sailor-esque vocabulary and crude jokes may have had something to do with it. I won't lie, I ignored my diagnosis for those 4.5 years. My focus was to explore my freedom (I grew up with a Tiger Mom who had me chained to the family restaurant 24x7) and complete my engineer degree. And like any normal 20-something female, get a boyfriend. In doing so, I learned a very important lesson that young me didn't know: boobs aren't everything. Mature males are more interested in your brains and personality.

I remember listening to the radio one morning during my Sophomore year. A young girl (16, I think) had called in to talk about how she wanted to get a boob job so that boys would notice her. Appalled, I tried to call into the radio station to share my learnings. I couldn't get through, so I emailed my response. Much to my surprise, they read it over the radio. I'm pretty sure the girl didn't take anything to heart, but at least I tried. Maybe it didn't help her, but perhaps it helped someone else who was listening to the show.

Not long after grad school started, I decided that I wanted to know for sure if having biological children was a possibility. I made an appointment to see my OB/GYN. Let met tell you, that was the most frustrating doctor's appointment that I have ever wasted my life on. My doctor charged me (a struggling college kid) $300 for 15 minutes of her time, mind you, the appointment took all of 5 minutes, and told me that I shouldn't worry about it. But when it came time, we could discuss options. She outright refused to help me.

1st or 2nd year  of my M.S. program. I'm so classy.

Upon hearing this, a close friend of mine referred me to a specialist in Seattle. My new doctor was AMAZING. She listened to me, poured over my medical history, ran some tests, and had answers for me in no time. So in February 2005, I was officially diagnosed with Primary Ovarian Failure. My ovaries were super tiny, but they existed. (What the heck had the GYN been checking all these years during those abdominal exams?) Not only did my ovaries refuse to communicate with my pituitary gland, they were empty, no follicles were to be seen. The chances that I would be able to conceive naturally were slim to none; donor eggs would be my best bet. At this stage in my life (non-procreating adult woman), birth control pills (BPCs) was the best method of treatment. The BPCs would deliver the hormones my body needed, especially for bone health.

(Thank you E for being there when the doctor called. Without you, I don't know how I would have ever been able to drive from Seattle to Corvallis that day.)

I'm not going to lie, while I expected the diagnosis, it stung. To say that it hurt a lot, is an understatement. I remember crying everyday after classes/research. Days turned into weeks, and weeks turned into months. I felt broken. I felt cheated. It was as if someone had taken my choice to have biological children away from me. It was as if my ability to be a woman/mother, had been ripped from me. If I had a dollar for every time I said "why me," I'd be fucking rich. I hated the world. I hated God. I hated everything. At age 23, life sucked once again. Only this time it was a different kind of sucking. It was a harsh reality to accept, and I wasn't ready to. So I ignored it. I focused on finishing school and getting a job. Because that's what "normal" and "unbroken" people where doing.

Well, I succeeded. And then I tried to run away from my problems by moving 3k miles away. Because that was totally logical at the time. I made a new life for myself and finally realized that I needed to deal with my reality. I may have POF, but I still needed to take care of myself. Unfortunately, being a petite-ish, Asian, female already puts me at risk for Osteopenia. Being a petite-ish, Asian, female with POF puts me at an even higher risk. In 2008, at the recommendation of a local POI/POF support group, I sought a Reproductive Endocrinologist (RE) who was familiar to POF to help monitor my health and  perhaps find a reason for my POF. Over the past 7 years, my RE has tracked my bone health, thyroid function, and etc. She tried and continues to search for the reason behind my POF. As of today, it remains unexplained. We speculate that it has to do with my body's autoimmunity. She has worked with me to move me off BCPs and onto hormone replacement therapy (HRT). We were hoping that introducing "normal" levels or estrogen and progesterone would help jump start my system. Yeah, not so much.

People, if you have POF/POI, take your estrogen, either BCPs or HRT!! I went through a long lapse. This gave me tremendous brain fog (you think pregnancy brain, imagine having it for life). It got so bad that I noticed that I would stop talking mid-sentence and my brain would completely empty out. You could probably hear marbles rattling around if I had shaken my head. The lapse, coupled with a decrease in dairy intake (I found out I was lactose intolerant) also resulted in my Osteopenia turning into Osteoporosis. So take your estrogen!

As much as having POF sucks, I am grateful that I found out when I did. I was able to take the time I needed to grieve and to accept my situation. I was able to take the time to research and understand my diagnosis. I was able to take the time to learn about the options I had for creating a family. I was able to seek out support groups and help others in the POI/POF community. Most importantly, I was able to do all of this at my own pace. I had my friends to support me, but given my personality, I needed to do it by myself. It's because of this that I can talk about my diagnosis freely and without being emotional.

My husband and I are "lucky" in that we get to skip over the struggles of trying to conceive (TTC) and having to find out later that my shit don't work. I can't even begin to pretend to know what that feels like. But we had (and have) a different kind of struggle. In the beginning, I had to decide whether or not to tell him. And then I had to decide at which point in our dating career to tell him that I couldn't have biological children. Tell him too soon and he'll probably think that I'm are crazy and already thinking about marriage and children. Tell him too late and he may feel like he's wasted his time. And after telling him, he had to decide what to do with that information. Does he want to continue the relationship or not? It's not like asking someone if they want pizza or take-out for dinner. You have to be patient and give them space and time to think. Let me tell you, waiting for him to think things over felt like an eternity. He choose me. All of me. (And of course, I chose him.) So together, as a team, we will overcome the struggles that come our way.

Jason Angelini Photography

The feelings of being "broken" have come and gone through the years. Mostly, I have good days. But sometimes, I have my moments. And I've grown to realize that it's OK to take a timeout and have a pity party for one and cry it out. At least that's what works for me.

So that's my story in a nutshell. I've glazed over a lot of things, so feel free to ask any questions. Hopefully, some part of this will help breakdown the stigma associated with infertility. 

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