#StartAsking How We Can End the Silence

Infertility can be a lonely path. But it doesn’t have to be. In honor of Resolve’s National Infertility Awareness Week, I am going to #StartAsking.

I will #StartAsking how I can share my story and help end the silence that surrounds infertility and pregnancy loss.

Infertility is an invisible disease.  Most people would never guess that Alex and I have been struggling with infertility for over two years. No one at my place of work, nor any of my extended family, knows that we did IVF. Or that it took us nearly two years, two surgeries, three IUI’s, one IVF, and one FET to achieve a pregnancy . Or that we lost that first little embryo, “Brodie,” at 9 weeks gestation despite seeing a healthy heartbeat on the ultrasound just a few days before.

After my miscarriage, I  started to think about how bizarre it is that so many women like me struggle in silence. There have been a record number of pregnancies at work this year – eight (!!) instead of the usual one or two .  For a short time, I was part of that club, even if no one knew it. After I miscarried, other women announced their pregnancies. First, women who were due in June like I had been. Then, women due in July or August or September. As they walked past me in the hallway, I would marvel at what a difference a few weeks makes.  These ladies were just like me, only their pregnancies had lasted into the second trimester, and that made all the difference. Their babies  were acknowledged and celebrated.  The moms-to-be were given support and encouragement as their pregnancies progressed.

For Alex and me, it’s as if our pregnancy never occurred.  Even our immediate families, who knew about the miscarriage and were incredibly supportive in the days following our loss, have since ceased to talk or ask about our infertility journey.

Why is it so taboo to talk about infertility and miscarriage?

1 in 8 couples struggle with infertility

10-20% of pregnancies end in miscarriage.

There are a hell of a lot of us out here, experiencing this, every day. Why, then, does no one talk about it?

I think a lot of the stigma around miscarriage comes from a misguided attempt to “protect” women.  Because miscarriage is so common in early pregnancy, women are advised to  keep their pregnancies secret until the second trimester.  I get this. I really do.   By not announcing early, you save yourself the heartbreak of having to repeatedly share bad news if you miscarry. You also won’t have to listen to misguided platitudes, such as “everything happens for a reason” or “at least you can get pregnant.” 

But sometimes the advice  of waiting till the second trimester begins to feel less like advice and more like an oppressive social expectation. Maybe it’s just me, but I feel like society gets pretty judgemental towards women who are bold enough to announce pregnancies before 14 weeks. As if by announcing too early, women are tempting fate and almost asking to miscarry.

Instead of protecting women, we’ve created a culture of silence.  Many women don’t realize how common miscarriage is until they’ve experienced it themselves. The same goes for infertility.  I didn’t realize my own parents experienced infertility until I was 29 years old.

You know what’s even worse? This culture of silence results in a lack of support and empathy for couples who do miscarry. Couples are encouraged to keep their pregnancies to themselves for their own emotional well-being.  But by doing so, they sacrifice the support of family and friends during one of the most difficult times of their lives.

I told my parents and best friend that I was pregnant at just 4 weeks. When people know you’ve just done IVF, it becomes challenging to keep it on the down-low. But I still hated telling people. The fear of it not working out was so intense.  After we announced to my parents, I had a mini-meltdown. I was so worried that if I miscarried, I would be causing them unnecessary sadness.

But, then I did miscarry. And I realized that I didn’t regret one thing. If I had it to do over again, I would still share the news with those closest to me. The silver lining of my miscarriage was that my parents and friends were there for us every step of the way. I’m a talker – I need to verbally rehash the hard stuff in my life to come to terms with it. So, after my miscarriage my Mom, my Dad, and my best friend got the play by play of our story. And while they probably could have done without hearing all the gritty details of a 9 week miscarriage, I could not have handled the miscarriage as well without their support.

This brings me back to those pregnant coworkers. Couples struggling with infertility and miscarriage deserve the support and kindness of their communities too. I don’t expect us to be treated exactly like pregnant women.  Our situation is pretty  different than that of my pregnant coworkers.  Plus, people on the street can actually SEE their growing bellies or the chubby faces of their newborns – and that makes all the difference when it comes to empathy and support.

So, what am I asking for then?: For friends and family to #StartAsking how they can acknowledge the struggles of infertile couples and support them on their journeys.

Our experiences are REAL. Our struggles and heartbreak are REAL. Don’t let anyone tell you otherwise. Be kind to yourself. Ask for support. Grieve for your losses, no matter how “small” someone else might deem them.

Unless they’ve gone through it themselves, many people don’t realize how deep of a loss a failed cycle can be. Many people do not understand how you can grieve for a baby that never “existed.” But we do. Many of us have been holding the hope a child – our child – in our hearts for much longer than 9 months. For Alex and me, it has been 26 months. For many others, it has been even longer.

I’m going to go out on a limb here and say that most of your friends and family want to support you. Sometimes they just don’t know how.  It is up to us to tell our stories and educate those closest to us. Highlight the fact that infertility is a disease and often requires treatment. Let others know about the emotional impacts of infertility and pregnancy loss  – that studies have shown the stress of infertility can be comparable to that of women with  cancer or heart disease. Share Resolve’s fact sheet on Coping with Infertility: How Friends and Family Can Help.

And, last but not least, I will #StartAsking how I can be an active member of the infertility community and support my fellow warriors.

This brings me back to my first point: Infertility can be a lonely and isolating experience. But it doesn’t have to be.  While my journey has been hard at times, it would have been a hell of a lot worse if not for a number of cool people. While I don’t know anyone in my day to day life that is currently going through infertility, support has come from some unlikely places. Specifically, the internet.  These two resources are my current favorites, but they are just the tip of the iceberg:

Heartships of Hope: About a year into my infertility journey, I discovered the infertility community on Youtube. These brave ladies put themselves out there and share all the gritty details of their struggles. In particular, Heartships of Hope made me fee like I wasn’t so alone after I miscarried. I don’t know Kaela, nor have I ever posted on Youtube, but I sooo related to her experience of miscarrying after IVF.

Beat Infertility: A few months ago, I discovered Heather Huhman’s podcast, Beat Infertility.  Every week, Heather interviews women who have “beat” infertility -through fertility treatments, adoption, or deciding to live child-free.  Many of these women have been through far more than I have: years of infertility, multiple miscarriages, stillbirth, etc.  The podcast also features experts – doctors, therapists, nutritionists – who discuss the medical and emotional sides of infertility. Listening to the podcast helps me stay positive and remember to be kind to myself. If these women can stay hopeful, I can too. There is also a Beat Infertility Community where women can share experiences, advice and support through social media.

As I said, this is just the tip of the iceberg. The strength and vitality of the infertility community is astounding.  Technology has allowed us to break down the walls of isolation and share knowledge in ways that were never possible before.  From the comfort of my couch, I can watch real women explain what an HSG feels like, how to give an intramuscular injection, or what to expect after an IVF egg retrieval.

I know it’s cliche, but knowledge is power. And this grassroots movement to improve women’s access to information on their healthcare has become a force to be reckoned with. This year, I pledge to add one more small voice to the chorus.

 

 

 

 

 

 

 

Septum Revisited

I think I’ve mentioned before how the infertility experience can feel an awful lot like the movie, Groundhog Day.  Just when you think you’ve gotten somewhere, you wake up and realize you’re back at square one.

A year ago, we had my uterine septum removed. Our RE discovered it during our initial consult back in February ’15. By the end of March, the septum was no more. And by the end of April, we were embarking on our first IUI cycle.

If things had proceeded in a linear, easy way, I would be sitting here saying, “and the rest is history” while smugly rubbing my third trimester pregnant belly.

But this journey has not been linear, nor has it been easy.  So instead, I’m back on the birth control pill, rubbing my bloat-bump, and waiting for Hysteroscopy #3 at the end of April.

I think we’ve met before 

After the miscarriage, we decided to take a break from fertility treatments for a few months. When the hope for FET#2 began to outweigh the fear of miscarrying again,  we started to move forward.  FET #2 was scheduled for the end of March. We also had another follow-up with our doctor to hash out some last minute concerns. Our big three were:

  • Natural FET
  • PGD (aka testing our remaining embryos)
  • the results of our post-miscarriage saline sonogram

At the end of February, we met with our doctor for the follow-up, expecting to get the green light to move on to FET#2.  We had already discussed most of these issues at our “WTF” appointment after the loss. There wasn’t much more to talk about.  I think we were just looking for peace of mind.

During our last saline sonogram in January ’16, there was a teeny, tiny bit of septum left. Mid-exam, the doctor said he highly doubted it was enough to cause a miscarriage. He had offered to do another hysteroscopy for my own peace of mind, but didn’t think it was strictly necessary.

So, time for the all-clear, right? Apparently not.

Imagine our surprise when we walked into to our follow-up and the first words out of the doctor’s mouth were about…. the septum.

After sitting down and reviewing the specifics of our case, I guess there was enough of a gray area to give him pause. He still wasn’t entirely convinced the septum was a problem.  But the only way to get some clarity was to do another hysteroscopy.  Ultimately, we decided the risks of moving ahead with an FET outweighed the benefits. If my teeny, tiny septum was still a problem, my chances of having a repeat miscarriage could be as high as 80%.

Sure, he walked us through PGD and natural FET cycles too, but he didn’t think either of these were a huge deal. Since I was only 30, it was unlikely that more than two of our embryos were abnormal. He was also was totally unfazed by natural FET. My clinic does natural cycles all the time and the cancellation rate is fairly low.

Another 6 Weeks of Winter

So, almost a year to the day, we were faced with the Same. Damn. Decision.

February 2015 – Hmmm…My septum is pretty small, but it could still cause a miscarriage. Do we go ahead with surgery to be safe?

February 2016 – Hmmm…My septum is even smaller, but it could still cause a miscarriage. Do we go ahead with surgery to be safe?

March 2015 – Stop TTC. Go on birth control. Become a hormonal nutcase. Have surgery. 

March  AND April 2016 – Stop TTC. Go on birth control for even longer. Try really damn hard not to be a hormonal nutcase. Get mad serious about therapist appointments, yoga, and healthy eating. Wait some more.  Have surgery for the umpteenth time *yawn*

It’s a Marathon, Not a Sprint

Five weeks down, three to go. Then surgery. Then another four weeks of waiting. Then, fingers crossed, we can start our next cycle. Estimated Start Date for FET #2: May 25th.

Patience has never been my strong point. I am also pretty stubborn. Sometimes I feel like the universe is trying to teach me some life lessons through all of this infertility bullshit. But, I’m me. And I guess I have to be dragged kicking and screaming through the same scenarios, over and over again, before those life lessons sink in.

After two years of infertility, I’m starting to learn some patience and coping techniques.  But, If we’re going to be honest, I still had a mini-meltdown the day that they called to schedule me for surgery. No surgery dates until the end of  APRIL?  Push back our FET until JUNE? 

Switching gears was  tough. My first instinct, as always, was to become a total control freak, look at the situation upside-down and sideways, and outline all possible scenarios for the future – from the happy to the catastrophic. This is one of my worst habits. Why, you might ask? Because it has absolutely NO POSITIVE EFFECT.

Okay…I’m going to stop using caps lock. My blog is starting to look like it’s written by a grandmother who doesn’t know how to use The Facebook.

But, anyway. Mindfulness, people. Mindfulness. It works. I just need to remember to do it.

Eventually, I calmed the fuck down. I remembered something that our infertility therapist told us once: When you start fertility treatment, you think it will be a short sprint to the finish line.  You never think you’re the one who will need IVF, or donor eggs, or a surrogate. You think that if you follow the right steps, muster all of your strength, and throw everything you have at this, you’ll make it to the finish line faster. It doesn’t matter if it hurts, or if you’re winded, because it’ll be over soon. You just need to suck it up for the short-term and before you know it, your baby will be in your arms.

Unfortunately, that’s not how it works for many of us. But that’s okay. We can still make it through if we change our strategy.

Infertility is a marathon, not a sprint.  I will get to the finish line, but it may take a while.  That is why it is so important to take this journey one step at a time and pace myself.

In addition to being impatient, I am also kind of obsessive. So, my first instinct is to put my head down and run full speed ahead. That is exactly what I did for the first 10 months of fertility treatments. I did get pregnant, but I was so emotionally and physically exhausted that I had a hard time dealing with the pregnancy itself.  After I miscarried, I hated the idea of going back to the clinic for more blood work and tests. I was just tired of it all.

Six months later, I have realized the importance of slowing down when I feel like running. Eight weeks of waiting for surgery is a drop in the bucket compared to what we’ve been through for the past two years.  In fact, eight weeks is a gift. I now have eight more weeks to strengthen myself and my relationship with Alex.  No one can predict the outcome of our next FET.  I do have complete faith, however, that I will be a mother one day. And when we finally get there, I want our child to be welcomed into a strong and centered family.

Two months of waiting isn’t a setback. Two months of waiting isn’t proof I wasn’t meant to be a mother. Two months of waiting just increases the odds that Alex and I will be some hardcore, awesome parents by the time we meet our baby.

(Now I just need someone to remind me of this when I have my next meltdown).

Till next time…