Tuesday, April 21, 2015

you are not alone.

I spent most of my twenties fearing the end of my fertility, in part because I knew my mother entered menopause early. I also knew it took her mother, my grandmother, nearly a decade to conceive my mom, and that in the end she was only able to do so with the help of whatever fertility drugs were being prescribed in the early 1950s.

And yet, when my husband and I first received our infertility diagnosis, our RE declared me "fine." The problem, he said, was the testosterone supplement my husband's urologist had surgically implanted in his thigh: it had rendered him sterile.

The relief I felt in the time that we waited for my husband's sperm to come back is indescribable. I was fine! I could make a baby! According to the RE (the one I've not-so-affectionately dubbed Dr. God Complex), a year wouldn't make a difference in my fertility - in his mind, the line between 35 and 36 wasn't as dire as the charts seem to make it.

Ten months after being declared "fine," I was rushed to the ER for the recurring pain I had nearly every time I ovulated. I'd been complaining about these episodes for years, but my gyno had dismissed my complaints as mittelschmerz and basically called me a cry baby. I didn't think this sounded like typical female pain, though. I would simultaneously feel like I had to poop, pee, and vomit, and then I'd writhe in bed, clutching my lower abdomen and sweating, until some anti-anxiety medicine would kick in and put me to sleep. 

For two years this happened, nearly every single cycle, until it started to get worse. I started to have the episodes outside of ovulation. Two weeks apart, just before my period, on a random Tuesday. One of the worst times it happened was the day of a close friend's funeral. She'd died young, unexpectedly, from complications with an autoimmune disorder. I was delivering one of the eulogies. The attack came on after I'd already put on my makeup, and I just kept moaning no, not today, please, God, not today.

Miraculously, my body pulled it together long enough for me to deliver the eulogy, but the pain returned during the last third of the funeral. I handed my dish off to a friend and went straight home, where I sweated and writhed and cried for hours.

The trip to the ER happened not long after that - less than a week. The attacks were coming too close together. For the first time, someone decided to use a transvaginal ultrasound to see what was going on in there. That's when they discovered the 10 cm dermoid cyst taking up residence on my left ovary.

I lost the ovary in the surgery meant to remove only the cyst. My surgeon liked to cut things. He prided himself on how quickly he was in and out of my body. Speedy Gonzalez didn't think I needed that ovary anyway. I was still planning on doing IVF, due to my husband's low sperm count, and I had another ovary. One would be plenty.

In the years following, I've come to form a theory of my own: there was a reason I almost always ovulated from the left ovary. That's where all of the good eggs were. The ovary that was left behind was lazy. In the wake of surgery, it took a long time becoming active. In every attempt at ART, we could only coax one decent follicle from the right ovary. Every. Single. Time. When my AMH was finally tested, it was <.16 - undetectable.

The depression that followed my IF diagnosis was so deep and so intense that my therapist asked me if I would consider attending a Resolve support group. It would be good for me, she said, to connect with others in my situation. I had attended support groups before, for people with loved ones who had mental illness, and found them to be less-than-helpful. They were bleak, these meetings. I never left feeling hopeful. 

But my therapist was insistent, so to the Resolve support group we went. My husband and I sat in a room of other couples and some women flying solo. I told our story to a group of strangers and listened as they told me theirs. I cried along with the young woman who'd just gotten her diagnosis of cervical cancer. They would harvest her eggs, but she'd never be able to carry a child. The pain she was in was so palpable, I just wanted to hug her.

It was cathartic, attending that group, and we returned, month after month, for the first year after our diagnosis. I formed a couple of friendships with women I met in that group, one a fellow DOR gal like myself (Kindred). The meeting facilitator formed a secret Facebook group for us to keep in touch in between meetings. I felt like I'd found my people.

Later, I'd move on from those meetings to my secret Facebook group of women pursuing donor embryos. It's an active group, more than 530 members strong, comprised of women from all over the world. They have answered my questions, cheered me on through two cycles, consoled me after my first-ever pregnancy turned into a miscarriage. They have followed me through my current pregnancy, and a satellite group - one focused solely on anxiety/depression stemming from IF/ART - has held my hand through every fear I've had about losing another baby.

In short, these women are my lifeline. 

I've made a lot of good friends thanks to my infertility. Some of the strongest, most resilient women I've ever met. My fellow infertiles, I call them. We share a bond that only another woman who's struggled to achieve (and sustain) a pregnancy can understand. 

That circle has expanded in the past seven months, after I started this blog and started spending time reading/commenting on other people's blogs. Women I've never met in "real" life, who I may never meet face to face, send me Facebook messages and leave me comments before every follow up appointment. "Thinking of you," they'll say. "Let me know how it goes." I do the same for them.

I am not alone. I am far from alone. And I am grateful to everyone in my support system, from the women I met in my Resolve group to the blogger whose story I just discovered last week. If you want to know how people survive infertility, this is it: through the camaraderie of fellow infertiles. People who've walked the path you're on. It doesn't matter if they're still in the thick of it or have reached the other side - these are your people. They will help you get through it.

I'm not fully "out" in terms of my infertility, but I will be. All along I've said that when I reach the other side - whether it be through a take-home baby or making the decision to live child-free - I will tell my story. I'll tell the story of my miscarriage, too, because that's another thing that needs to be talked about more openly. 

Why not now? you wonder. I'm just not ready. I'm still in the trenches, fighting my way toward the family my husband and I so desperately want. I'm not ashamed of what I've been through. I'm not embarrassed. Biology is what it is. A doctor put hormones in my  husband without counseling him that they would render him sterile. A surgeon stole my good ovary and patted himself on the back because of his speediness. I can't change any of these things.

For now, I tell my story anonymously, through this blog, because I want others to feel less alone. And it's working. Recently, a woman found my blog after researching the too-small gestational sac that led to her miscarriage. She told me that reading about my experience with the same thing helped her come to terms with her situation.

I cried when I read that. Because I can't tell you how many times I've done the same exact thing - found someone out there, through an online or in-person support group, or through the blogosphere, and said YOU, YES YOU, YOU ARE MY PEOPLE. THANK YOU FOR SHARING YOUR STORY.

This post was written in response to Resolve's National Infertility Awareness Week. Click here to learn more about the disease of infertility. To read more stories of hope, check out the NAIW 2015 Blogroll.


  1. What a great post, and I'm sorry for your experiences so far...but I share some similarities. One being that I lost my right ovary and fallopian tube to a cyst two years ago (hey, together we make a full repro. tract!) and my remaining ovary is less than productive. I have not been tested for DOR yet, I'm terrified to get the testing but I know it needs to be done.

    Thanks for sharing!! Here via ICLW.

    1. Thank you! I'm sorry that you too lost an ovary - that's funny about us making a full tract! Get the test. It's scary but I will tell you that it's better to have knowledge than to wonder (at least, in my opinion).

  2. That was so, so nice to read! I had the exact same pain every month while in high school due to a cyst and I can't believe you were ignored for so long. I had no idea, though, that you lost your left ovary in that manner. It's a shame that so many people dismiss the importance of quality work nowadays.

    With that said, I'm so thankful that you've found such a great group of women to help you through the trenches and you're right, one day you WILL be able to share your story with your name attached and I can't wait for that day (not too far off!!).

    I really am thankful that I stumbled on your blog. Although we're not in the exact same situation, it's still comforting to hear and experience others' stories.

    1. Thank you! I'm sorry you had to deal with a painful cyst, too. I will say the whole experience made me realize that I needed to stand up for myself more when I know something isn't right. I just wish it wasn't a lesson I had to learn the hard way.

  3. Great post! I still remember the first blogs I found online that made me realize I wasn't alone. Putting yourself out there in whatever form you're comfortable with now is helpful to someone (as you've already discovered!)

    1. It really does help to find your people, doesn't it?

  4. Great post. It boggles my mind how some doctors really think losing an ovary isn't a very big deal. Ugh I'm so sorry you went through that. I have some pretty intense pain when I ovulate, too. I had the same pain after ovulation many years ago and was scheduled for a transvaginal right away. I can't believe they waited so long to take a look. Anyway, you are definitely not alone. None of us are. I know we feel that way sometimes (a lot) but there's a large number of us out here. And I'm extra glad I found you because we share another commonality with our family situation.

    1. I've been talking about this a lot this week - about how I wasn't able to stand up for myself with the ovulation pain I had - the worst part is that I had seen an RE before who DID do transvag u/s (well, his PA did) and she didn't catch the dermoid either. The system just failed me, plain and simple.

      And I feel the same way about you! :)