NIAW Feature: Finding a Voice

Jane Jolis captured by photographer, Alexis Mera. Shirt design by Kayla Kleinman.

Although National Infertility Awareness Week (NIAW) has completed this year, I thought it was important to close out the week with Jane Jolis’ powerful story of advocacy. It’s a message that we should carry with us all year long. Jane reminds us that nothing is promised, including a baby, and that when we listen to inner voice and advocate for ourselves, we are set up for success to arrive, and confront the root of the issues that may be standing in our paths to parenthood.

However nebulous and out of our control this journey is, using our voices to advocate for ourselves is paramount. Jane and I discussed that If something doesn’t feel right, it probably isn’t. There is something to be said about following our gut after all…

Jane’s story

I’ve always wanted to be a mother, ever since I was a little girl. I was the three-year old stuffing my shirt with pillows to “play pregnant”. So it came as a particularly painful shock when, after six months of trying, my husband and I learned that we should try IVF. I have diminished ovarian reserve, and my husband, low morphology/motility. We skipped over IUI and went straight to IVF.

Despite our challenges we had success in creating healthy embryos right from the start. However after transferring a total of four in the span of one year and having no success, we realized that something was wrong. I had to push hard and advocate for myself in order to have the laparoscopy which is ultimately the reason I am now a mother.

In December of 2017 I had the surgery to uncover suspected endometriosis, and not only did they find endometriosis but they also found that both of my (Fallopian) tubes were damaged and had hydrosalpinges. Hydrosalpinges meant that fluid was leaking into my uterus and could be toxic to the embryos. Damaged tubes also accounted for why I’d never been able to get pregnant naturally.

My Fallopian tubes were removed and after a canceled cycle, heartbreaking in its own right, I did my fourth IVF cycle and a fresh three-day embryo transfer, ultimately resulting in the birth of my son, now four months old. Although my situation turns out to be somewhat rare given that nothing ever came up on any scans indicating that my Fallopian tubes might be damaged, it speaks to the fact that if I hadn’t advocated for myself, I am not sure how long it would have taken, or if we would have been able to tackle the problem directly.

Your High?

My true high was the birth of my son, and still is. Also just seeing that first positive pregnancy test with a strong line was incredible. However I’d say another high, as crazy as it sounds, was learning that my tubes were severely damaged, and that they’d likely been impeding my success all along. As sick as that sounds, when you’re deep in the darkness that is unexplained infertility and IVF, any answers are positive because it may mean a solution to fix it.

Your low?

There were honestly so, so many. Every failed transfer was a huge low. The lowest was probably after my second transfer when I was in fact pregnant but lost the pregnancy after only a week or two, (a chemical pregnancy). I’d been watching the HCG rise, but not enough… and I spent the worst weekend of my life obsessing over (pregnancy) pee sticks and texting pictures to my doctor. At one point I found myself on the bathroom floor at 3 am surrounded by sticks. My husband had to physically come and remove me from them and from the bathroom. I was a wreck. Watching the HCG rise but not ultimately rise enough was one of the slowest tortures that I could ever have imagined. I truly felt broken after that, and had no idea how I was going get past that (moment).

Do you have a silver lining?

This experience has led me to build a fertility coaching/advocacy consultancy as I feel called to work with women and families struggling with (in)fertility. There is such a need to support those in the deepest thick of this who are trying to navigate the darkness with no end in sight. I can relate to that feeling of sheer panic and fear because I have been there. I’ve realized that this is the work I’m meant to do, and I’m working to build this business. 

Do you have any words of wisdom?

Stop trying to pressure yourself to “stay positive.” This was the hardest part for me; trying to maintain hope and optimism when all I felt was panic and dread. Sometimes you just need to feel your feelings and lie in the darkness and cry. And that’s okay. You will eventually make it to the other side, but that “other side” may not look the way you’d originally thought it would, and that’s okay too. Letting go of maintaining a falsely positive outlook was integral to my survival (during the journey).

There were many times that I thought I would never be a mom, but had I felt that my doubts were further holding me back from getting pregnant, it would have made me even crazier. The truth is, feeling good and relaxed is ideal, since stress (during IVF) is real. If you don’t always feel positive, don’t beat yourself up over not feeling that way. Whether or not your attitude is 100% positive all of the time is not going to be what does, or does not get you your baby.

Jane lives in Brooklyn with her husband and four month old son. As a direct result of Jane’s experience, she is currently building an (in)fertility advocacy and coaching practice. Please stay tuned for details or reach out if you would like to be connected with Jane.

NIAW Feature: The Waiting...

Jennie Monness photographed by Alexis Mera. and shirt design by Erin Halper.

I was first introduced to Jennie recently and I was immediately struck by her kind and gentle energy. She literally radiates positivity, and that is why it makes it difficult to believe that she has ever had a difficult day. Infertility wears many masks and Jennie has been brave enough to shed those by sharing that both getting pregnant and pregnancy itself weren’t a walk in the park for her.

There is a reason why “waiting is the hardest part” is a tried and true quote. Like many of us, Jennie put a lot of pressure on herself to get pregnant, and when it wasn’t happening, she took action by finding a mentor and advocating for herself to try to find out why.

Jennie’s story:

I remember hearing that once you want to have a baby it goes from 0 to 100 really quick. That’s what my relationship was like with infertility. Starting at a zero anxiety level, in no real rush, I went off of birth control in November 2015.  My husband is younger than me and he was nervous and not totally “ready.” So, I told him we could wait but that first I needed to know that we didn’t have any issues getting pregnant, as I wanted to stay at 0. I was 32 and slightly hesitant about waiting and having a potential issue. So I got checked, and he did too.

Sure enough, we found out there were some issues. We were told that we could still get pregnant naturally but that it may take a bit longer. That is when it went from 0 to 100 for me. I soon felt that I couldn’t get pregnant quickly enough and I needed it to happen yesterday. We gave it five months and nothing happened. We decided that with no real remedy for our “subtle” issues, we should visit a fertility doctor. The doctor told us he’d try an IUI. Two failed IUI’s later we decided to move onto IVF. I remember one doctor telling me “you decide how fast you want to ride this train,” and I jokingly told my mom, I wanted the freaking ACELA express. 

I spoke to a close friend who had done IVF and asked her for advice as I stepped into this uncharted territory. She told me that before I start the process of IVF I should ask for a saline sonogram. I humored her and asked my doctor for one. I got the saline sonogram and the results showed that I had a septate uterus and needed a surgery called a hysteroscopy. I had to postpone our IVF process for this surgery. I felt so impatient and as if time was running out. Once the hysteroscopy was done, we started egg retrieval. After retrieval and ICSI, we had created successful embryos and were lucky enough to get plenty. We were hopeful and excited for our first transfer. It failed. The same friend who advised me to ask for a saline sonogram, mentioned a reproductive immunologist.

Due to a family history of immunological issues, we made the tough decision to postpone our next transfer until I visited this reproductive specialist. I couldn’t get an appointment right away, so this meant about a two month delay in this process that already couldn’t happen quickly enough. Against everything I felt in my heart, my head told me that I needed to do this, and give this next shot everything I could. I finally had my blood appointment, where they took a ton of blood. A few weeks later, the doctor put me on a protocol of steroids, blood thinners and intralipids.

My next transfer was a success and I was pregnant by March of 2017.  I now have the most incredible 16 month old girl and know that this whole journey was because SHE was meant to be my baby. 

Your high?

The moment Tess was born!

Your low?

My failed FET because it meant more waiting. Waiting was the hardest part. Patience and getting pregnant don’t really go hand in hand when you want it. There were doctors who told us to try for 6 months and come back, or doctors who had “black out” periods, or medical necessities we had to go through (the IUIs, the hysteroscopy, the reproductive immunologist, the intralipid protocol, etc.,) and the waiting was torture.

Not only that, but we had no idea if the waiting would result in a pregnancy and it brought on questions like “am I too old?” or “what if I cant ever get pregnant?” I had never had a pregnancy before in my life so the waiting was especially hard because we were living in this unknown period of “will we ever be parents and how long will it take?”

Do you have a silver lining?

Infertility let me know that there are some things that I can’t control. I’ve lived my entire life mapping out when and how things were going to happen, and they always seemed to fall into place. Infertility taught me that just like I anticipated motherhood to be, life doesn’t always happen according to plan. I’ve learned to accept that and I felt stronger and more ready to become a mom because of it.

Any misconceptions that you had on journey?

Once I was on the route to IVF, I thought that I would be guided along the way until pregnancy. While I had incredible doctors, there were a handful of things that I had to ask for, advocate for, and fight for in order to find the right treatments. What took me a year and a half, with most approved by insurance, could easily have taken 5+ years with an insurance denial, had I not quickly learned that I had to be my own advocate. I had to fight hard for what I knew was right.

Do you have any words of wisdom?

Be your biggest advocate and never give up. Our journey would have taken some couples years, but because I asked for specific things early on, and had an incredible support person telling me what to advocate for, my process took us just one year. No matter how many delays and disappointments there were, I just kept trying and kept going. Although a year seems like an eternity during this process, I got through it knowing that by being my voicing my needs and concerns, I was already advocating for my future child and moving closer to becoming a mom. 

Jennie Monness is the founder and creator of Mo' Mommies and Union Square Play, a place go meet, socialize and build community for moms and their babies. Jennie studied Psychology in Education and received her Master’s Degree from Teachers College, Columbia University. She completed the Foundations to RIE® course and is currently completing her practicum in the approach as well. Visit momommies.com and @momommies to learn more.