Things I have said many times before:
“I would never wish infertility on my worst enemy.”
“If I could wave a magic wand and take it all away, I wouldn’t.”
“Infertility does not define me, but it does color the way I look at the world.”
With all of that said…
If I had known about my infertility before I did, if I knew this was a possibility, would that have changed things?
Would I have lived my life differently?
. . .
Esperanza at Stumbling Gracefully and I were chatting on Twitter a few weeks ago about defining ourselves as infertile and us each having a suspicion that we might one day face fertility problems. For Esperanza, the suspicions were raised when she had unexplained amennorhea in her teens; since she clearly wasn’t trying to conceive at the time, it was one of those back-burner suspicions. Fertility isn’t something you necessarily think about before your 20s.
Today, Esperanza tells the rest of her story as we both muse on the same thought about somehow knowing that infertility was something we might wrestle with down the pike.
. . .
Let me back this up a few years. In fact, let’s both save ourselves some time and go read the primer on my entire reproductive history up until about 2 years ago.
No it’s cool, I’ll wait. It’ll take you like, 5 minutes – tops.
. . .
I’ll never forget my oopherectomy. To recap: I had my left ovary removed 11 years ago in emergency surgery to remove a torsioned cyst that had actually killed the ovarian organ. It was totally as awful as that sounds.
At the time, Larry and I were boyfriend and girlfriend, freshmen in college. He rescheduled a final exam so he could be there by my bedside when I woke up from surgery.
I knew going into the surgery there was a chance that I could lose the ovary.
I remember asking my mom what happened after I woke up. She was the first person to tell me that had to remove the ovary. To this day, I still remember the pain in her voice.
When the surgeon came in later, I asked her if I could still have children. At 18, with my (newly-gotten back together-ed with*) boyfriend, I asked a question that probably few women in their teens have ever questioned.
“Of course,” my blond-haired surgeon replied. She had kind blue eyes. “That’s why you have two of them. That’s why you have a lot of redundant organs, except for the really important ones like your heart, brain, and liver.”
At 18, that was a good enough answer for me.
And stupidly, I left it at that.
{*Pardon the poor grammar here. So, some relationship backstory: at the time of my surgery, Larry and I had been dating again for just over 3 months after having been broken up for over a year after 2 years of dating in high school.}
. . .
I fantasized about marrying Larry a lot when we were in college, and afterword. Oddly enough, I never really fantasized about having children with him. I think it was largely because I just assumed children would be the natural next step once we skeedaddled down the aisle together.
We knew that there might be issues. The whole reason for the surgery was that I had PCOS that wasn’t diagnosed early enough, and one of my cysts just lost its damn mind and basically ate my ovary in the process.
It didn’t change his mind when he surprised me with a stunning ring in our apartment in 2006. It didn’t change my mind when through grateful disbelief, I said yes.
. . .
Larry is my soulmate. My lover. My best friend.
On our wedding night, the world existed only for us.
His hands would trace my body and he would run his fingers over the tiny scars on my abdomen. His eyes were fixed on mine. In those moments as new husband and wife, the only world that existed was the one between our eyes, our bodies, our hearts.
His fingers didn’t linger or stop on those scars. Our life together didn’t stop at those scars either.
We were moving forward, onward.
. . .
I will totally fess up to something I’ve never really admitted to on this blog, mostly because I feel like I’ve needed to save face. I had baby-fever like whoa – LIKE WHOA – right after our friends Nicole and Andy had their first child in 2009. In fact, it was at the Chinese restaurant down the way from the hospital Nicole gave birth that Larry and I actually made our family planning timeline. We were coming up on our first wedding anniversary just a few months later and while we had casually talked kids, we had never really set a date.
May 2011. That was the goal. Let’s get me knocked up by then.
I remember tossing into that conversation, somewhere in between the General Tso’s and the Sesame Chicken: “It might take a little longer, because I’ve only got one ovary.”
So fucking naive.
After Liam was born, my Mother Hen got the better of me and I became a baby nag. “Do we really have to wait until May 2011?” I would cluck. And cluck. And peck. And cluck. It drove Larry very nearly to the edge. It was like Liam’s birth had finally turned on my biological clock and boy howdy, there was no turning it off.
As I started doing research into hormonal birth control and the migraine contraindication that my doctors had ignored for most of my life, I read Toni Weschler’s Taking Charge of Your Fertility. “Aha!” I thought. “I can ditch the hormones AND run the risk of an oops baby, blame it on still learning the temping/charting system AND fulfill all my needs at once!”
It was just before the holidays I think, when another couple, a mutual friend to Larry, Nicole, and Andy and I, announced they were pregnant with their first. That very nearly sent me over the edge when I realized just how damn badly I wanted a baby.
In the middle of all of this, right near when I was stopping the birth control to switch to temping and charting, I got careless with my pills and I ended up having to take emergency contraception.
What a waste of $50. G-d, and that headache that lasted for 3 days, the nausea…
If only I’d known. But…
I had known, hadn’t I?
. . .
Always, that voice: “You know you only have one ovary, right?”
. . .
And here we are. 3 missed periods after I stopped the pill. Negative pregnancy tests just to be sure. Endless hot flashes. Embarrassing night sweats. Terrifying heart palpitations. At 26 years old, I was handed the diagnosis that changed everything:
Premature Ovarian Failure.
I knew that POF was literally the worst-case scenario, the end of the line death sentence on my reproductive abilities. I always knew that POF was a possibility. Weschler devotes just two paragraphs to POF in her whole book, under “A Special Note on Four Distinct Fertility Problems:”
Finally, Premature Ovarian Failure is perhaps the least amenable to treatment, but fortunately, it is also fairly rare.
I knew my busted ovary might cause some problems for us. And yes, POF was the worst-case scenario. I just never figured it would be me.
. . .
I revisit my earlier statement.
If I had known about my infertility before I did, if I knew this was a possibility, would that have changed things? Would I have lived my life differently?
In my heart of hearts, I think I always knew that I would have fertility issues. And I haven’t lived my life differently. I haven’t pushed away the man I loved because I knew I might not be able to have his children. He didn’t reject me.
We’ve lived our lives the best way we know how. And in the wake of infertility, we continue to do just that.
Knowing, or even suspecting, that we might fertility issues, hasn’t changed the way we’ve gone about our lives pre-diagnosis. Did we play blissful ignorance? Let that thought simmer too long on the back-burner? Perhaps.
It doesn’t change this moment. And while my life is indeed very different that I imagined, I haven’t really done much differently, if that makes sense.
. . .
If you knew you had fertility issues before you began to conceive, whether it was a few months or several years – has that shaped the way you lived your life pre-diagnosis? Share your thoughts in the comments and go read Esperanza’s take on this whole notion.
Though we come from radically different ponts of view, I love this post. The questions you ask are ones that I entertain randomly and very occasionally. I knew I was infertile from age 26 on. I believe because I didn’t consider some of the questions you are asking, I allowed my infertility to negatively define me for many years. I did a lot of stupid things I would have never otherwise considered (as though punishing myself), and I still deal with the baggage from time to time. Now, as an older mother (I’m 50, my daughter is 7) I continue to ponder my journey to motherhood and consider what I will share with my daughter. I find, too, that I regret my choices less… if nothing else, I’ve learned so very much I want to share. Now I regret the time I spent allowing my infertility to define me.
What I like about your blog is that I feel it giving me (and hopefully others) the strength to not be defined by their infertility.
Great question. I sometimes ask myself this one and honestly, no. I mean, in the small stuff, maybe. But I came to infertility via my DH’s having had a vasectomy and, perhaps unsurprisingly, along with that came 2 teenaged kids — my stepkids. And the thing was, providing for them, getting them through college, helping them find their own life courses was more important than having a baby, it really truly was. So that’s sort of a different answer, a different set of life choices, but all the same. Now that I’m on the other side, albeit with one less kid than I’d hoped I’d have (one rather than two), I’m pretty much at peace with all that, though I will admit I’m not sure I’d have found this peace had other outcomes (childlessness, loss, maybe even other routes to motherhood though I hope that isn’t true) ensued.
Unlike many, I did not wait to start trying to get pregnant til after we got married. We decided in the months leading up to the wedding that we should start trying, cause really, if we found out that we were pregnant before the wedding, whats the worst that would happen? That I might be pregnant at the wedding and I couldn’t drink? I really didn’t care either way cause we were ready for babies, we had been ready for over a year and we were tired of waiting. We lived together and we were months away from marriage. The parents would have been happy either way that we were about to welcome a first grandchild for both sets of parents.
But deep down, I expected it to take awhile. And when it was “awhile” and we were wondering why we still didn’t seen those two lines on the test, I expected it to be me. I always thought that if there was a problem it was me. I never even considered that it might be male factor. And then we started seeing doctors and we find out that its him. And hes heartbroken and he thinks he is letting me down. Emotionally its really tested us. Now its 2.5 years, in an area that still treats it like taboo and we are waiting to see a urologist who has a wait time of over 12 months before they will send us to a fertility specialists but they refuses to refer us to someone who will see us sooner. I feel like it will never happen cause no one here wants to talk about it or deal with it. So I take comfort in your blog and other blogs and the online supports that are there. I’ve only just started taking to the internet for support and this is my coming out (of sorts) to infertility groups about our struggles and I’m grateful for what I have found. So to you and all you ladies who comment, thank you. Your words make that loneliness and pain just a little less. :o)
This is a really interesting discussion! Thanks for starting it!
I never in a million years suspected I’d have any trouble getting pregnant, which has made coming to terms with my situation extremely hard. In fact (TMI alert) I always had such copious CF at midcycle that I assumed I was super fertile, and to an extent, I am. I get pregnant way too easily for a habitual aborter.
But the things that cause my miscarriages aren’t age related. MTHFR is genetic, so I’ve had that all my life, and, without realizing it, I’ve had symptoms of the insulin resistance that leads to PCOS and auto-immune issues since long before I went through puberty. So I have absolutely no regrets about not trying sooner. I really believe that starting trying sooner would only have started me on this hellish road sooner, when I would have been less able to emotionally cope with it.
What I do regret are the dietary and life-style choices that were made for me, by my parents, that I believe may have exacerbated my insulin resistance and auto-immune issues. But again, my parents choices were out of my control, so I don’t end up spending much time regretting them, either.
My fertility issues came completely out of the blue, slammed into me, and f’d with my world for quite a while. No warning so nothing I could do differently.
Oof. That’s rough. I was definitely blindsided by the POF diagnosis, but I always had that nagging thought, yanno? It’s stories like yours that I know can be considerably painful. I’d like to think you have come out a rockstar in the process 🙂 Thanks for commenting!
I really enjoyed reading both of you on this topic today.
Though I never suspected I was infertile, I don’t think that knowing would have changed anything for me … I’ve always tried to do the best with whatever hand I’ve been dealt, and I suspect the same would be true here (though it’s hard to know for sure). And in the end, the way it’s worked out has actually been good for me, despite the heartache along the way.
Beautiful sentiment, Justine. Thanks for adding your voice to the conversation!
Interesting post Keiko. Thank you for sharing. I love that you and Esperanza collaborated on your posts too! Very cleaver and thought provoking to get both of your perspectives on this.
As I shared in my comment on Eaperanza’s post, I have a close loves one who was diagnosed w/ POF at 18. It was not the news that a young woman in high school wants to received. Anyway, when I reflect on it now, it’s interesting (that’s not the word I’m looking for, but close enough) to look at the similarities and differences of our infertility journies.
I am typing this comment on my phone and can’t scroll back up, but whether it was in your post or the comments or both, I appreciate the discussion on regards to why some of us choose to become advocates and others do not after dealing with IF and loss.
Thanks again to you and Esperanza for your “tandem posts” today!
Thanks for commenting Kathy! I seriously cannot imagine being diagnosed with POI at 18. Like… wow. And I feel like that is an infertility story that often gets marginalized in the greater gamut of IF stories, yanno?
Tandem posts are fun! We should do one together too 🙂
I had no known family history of infertility but always had a nagging suspicion that something was wrong. From a very young age. It’s odd how many of us just have a gut feeling.
I just love this: “We’ve lived our lives the best way we know how. And in the wake of infertility, we continue to do just that.”
Yanno, it IS odd, and yet so many commenters here have shared the same sentiments. I think there’s something bigger at work here… I smell a Prompt-ly post!
I was diagnosed with PCOS when I was 21, and had irregular periods all the time. My husband and I thought we were going to need medical intervention without question, so we threw away the BC on our honeymoon. Little did I know that my PCOS would be the least of my worries. though t’s still a nagging concern in the back of my mind. My losses have made my periods regular for the first time in my life (how ironic), but I still have that nagging fear that PCOS will rear its ugly head any day now, and I’ll have more to contend with than just busted tubes. Even when you think you know, you never actually know until it happens.
Wise words my friend, wise words. Thank you for sharing your experiences here.
Thanks hon. Can I just say how awesome the new WP commenting platform is? Good move. 🙂
When it didn’t happen the first year, I started worrying that I’d never be able to have children. I come from a very fertile family on my mom and dad’s sides, but I also have one aunt on each side who was unable to have kids. Seven and a half years later and no live children, the only thing I would have done differently is start right away and not wait three years to try.
Aimee, thank you for sharing your experiences. It can be hard to look back and think, “I should have done this differently.” Wishing you much luck in your journey.
What a great post! Thanks for writing in tandem with me. I really enjoyed it.
I remember talking to you about this on Twitter, and mentioning that at least you didn’t waste a year trying before you figured out what was wrong, at least you had time to get prepared for what you would have to do and you said you felt you’d been cheated out of those experiences, the just trying part, the naive “we can do this together” feeling that most couples feel. I had never thought about losing that because I never had it, but now, looking back, I see what a loss that it is and I’m so sorry you suffered from that on top of everything else infertility has taken.
I wonder if the fact that you had time before you wanted to/were able start trying to build a family via donor eggs (or whatever path you plan to travel) is what helped push you towards advocacy. I’ve read many times that infertility advocacy doesn’t get as much support as it might because when people are in the throes of it they are all consumed by trying to have a baby and when their infertility is resolved they don’t want to think back on how hard it was, so they move on (of course the stigma is a huge part of it too, probably the biggest part). You are in a unique situation in that you know about your infertility but are not yet trying to build your family. I wonder if that is one thing that caused you to jump so much into advocacy, because you had all this energy surrounding your infertility but weren’t yet pouring it into trearment. Of course, an advocate might be who you are, in fact I bet that is the case, but it is something I’ve thought about.
Again, thanks for writing this. I appreciate it very much. I hope we can collaborate on something again soon! 😉
You hit the nail right on the head, Esperanza. Since we can’t really DO anything right now, the only thing I can think of to do is to give back to the community however I can. I figure I have the luxury of time and energy that some in treatment just don’t have, so I fight the fight for the people who can’t right now.
This was such a neat exercise – thanks for suggesting it and staying on me to write about it 🙂 I’m heading over in a few to go check out the comments at your post.
Great post, and a really interesting question. I’ve often wondered the same thing. I think I knew, but I’m not sure why. It was always a concern for me. I can remember after my husband and I got married (when we started talking about having kids) praying that I’d be able to have children. Why would I be so worried about not being able to have kids if I thought everything was fine. When we started trying, I really had the thought something was not right. I think these thoughts are what led me to be so adamant when we started trying to get pregnant. If I had no clue of our fertility issues, I imagine we would have tried for years before consulting a doctor and my endometriosis would have gone undiagnosed for far longer.
Having said all that, I have found that my fertility issues have made many of my friends worry they will have issues too. Perhaps, this is just such an emotional issue that many women, fertility issues or not, worry something will go wrong. For many, nothing goes wrong and their underlying worry disappears. For some of us, our greatest fears (which may have been unwarranted) come true, and we remember all those thoughts.
As I mentioned to MissOkay above, I’m reading this throughout many of the comments here.
I’ve totally become the fertility guru of my circle of friends and at the very least, a few of them have become proactive about testing just to be safe. So while it might seem like we might be worrying them for nothing, at least for one of my friends, it was really important they did do testing b/c she learned she had PCOS.
I too hate the sometimes-causality we feel about worrying about something, like maybe we worried it on ourselves. Thanks for sharing!
I never suspected I might be infertile. When I thought about, I assumed I’d take after my mother. My father said, “I need a dependent to stay out of Vietnam,” and my mom threw away her birth control pills and my brother was born within the year. Then they said, “We want a girl.” and I was born.
When I got married, I waited the requisite three months to start trying and expected I’d be pregnant by year’s end. And then the months and years of disappointments and confusion and blame and the confusing and contradictory diagnoses that ultimately mean I have “unexplained infertility.”
I would definitely have done things differently. I would have insisted on starting sooner, getting married earlier, maybe not getting married at all so I didn’t have to drag my loving husband into this misery. We have our baby now, but I wouldn’t wish our seven year struggle on anyone. Was she worth it? Oh, absolutely. But she’d have been just has beloved if she’d been born in 2004.
Marci, I love how you share all the things you would have done differently and yet you acknowledge that the path you have taken is still just as valuable and valid, as it led you to your daughter that you have now. Thank you so much for sharing your story!
It was always in the back of my mind that I might be infertile. I never had the scares that everyone else had, despite sometimes haphazard birth control. But I wished I would have them. That’s why I took a lot of risks that I probably shouldn’t have, but at least I made it through okay.
No, I would not have changed anything, because I would not have wanted children with anyone else as I want them (or just one, one is fine, please) with my husband.
And that makes perfect sense, that it’s different but it’s not, because while I always wanted a house full of children, my life would have been almost exactly the same. Maybe we’d be at six years of trying instead of five, but that’s about it.
Lol, I can totally understand the “just one please” sentiment 😉 Thanks for sharing!
Interesting. (And I’m sorry.) For no medical reason at all, I always suspected that I might have trouble. It was just something that would flash across my mind on occasion and I would brush it away. I never suspected that my trouble would be recurrent loss because I’d never heard of that! I would not have changed my life though. I started dating mrohkay at 27, married him at 29, and we started trying 2 years later when we were ready (emotionally and job-wise). To me, it’s interesting that you and I both had suspicions but were nevertheless surprised that it happened to us…
It’s interesting how often this has been repeated downthread in the rest of the comments. I think this might spark it’s own separate post about intuition. Thanks for commenting!