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Gretchen Amen's Endometriosis & IVF Journey

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Read Gretchen's story here:

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You grow up, meet someone, fall in love, get married and have children! That is what they tell you as a little kid of how your life should progress, but what do you do when you grow up and that plan doesn’t happen? When that last part doesn’t become reality?

Our infertility story actually started way before we even met each other. John is a cancer survivor. At the age of 23, he was diagnosed with an aggressive form of testicular cancer – his treatment involved surgery, removal of lymph nodes, and chemo. Since his cancer was so advanced, by the time he was diagnosed, they did not freeze sperm beforehand. When we started seriously dating, this was a conversation that came up quite often because it was a possibility that we could never have children of our own. However, John’s Oncologist told him when he was ready to have kids, he should come in and he would give him a pill – no problem. That advice would be very wrong in the future.

We went on with our love story, bought a house, and got engaged! A few months before getting engaged, I kept getting these horrible abdominal pains. I always played them off as IBS or maybe my gall bladder, but never thought it could be more than that. After many episodes of falling to my knees in pain, passing out from pain and nervous this could happen out of the blue when I was somewhere important, I went to the ER. There, the tech gave me a whole bunch of wrong information but it did get me moving to see a specialist. I figured that once we got married, I wanted kids right away so let me get myself checked out to make sure I am all good before we go down this crazy road with John and then it’s actually me that is the problem. We would soon find out that we were both the problem.

My fertility specialist said I definitely had a cyst on my ovary and that was causing the pain, but I had a history of cysts (literally I had one burst when I was 9) and super heavy periods my whole life so we would play it out. Endometriosis was brought up by some techs, but never a real conversation. I went almost a year of checkups and many episodes, as I call them, until one finally scared everyone. 3 weeks after returning from our honeymoon I had another & when I went into the office for a checkup & blood work – that cyst looked a lot different. Also added that my levels were kind of off, so I was scheduled for emergency surgery 2 days later. The scare was that maybe it looked like a cancer cell, but they had to go in to be sure. What everything ended up being was endometriosis everywhere and an Endometrioma inside my right ovary that kept twisting and changing. It was causing all that pain.

So now what? My doctor told us to get pregnant and get pregnant now! That was easier said than done since we knew we would have a whole other factor to add to this. Our next step was to go to a Urologist for John. The doctor wanted us to try some medication and supplements to see what it would do to John’s levels before going to more drastic measures. From there he was on Clomid and all sorts of vitamins and regimens, but we weren’t getting pregnant. Every month was a negative. After 7 months of trying, we had one more appointment. His doctor had high hopes of having good numbers and the possibility of an IUI. Whelp, that appointment went downhill kind of quickly. We went in for a sample, went to lunch, and came back to a hard conversation that we weren’t expecting that day.

I am not quite sure how the conversation with the doctor went because the only thing I heard him say was, “You cannot get pregnant naturally; you will have to have surgery to determine if you can even have children and the only way to make this work is to do IVF.” We were completely devastated. Not because we didn’t know that could have been an option on our baby journey, but we didn’t think it was going to be the only option. When we got that news, our hearts were broken.

From that moment, we decided to take the summer off of trying to have a baby and to enjoy life again. Infertility is not an exciting process, and we had spent almost our whole first year of marriage engorged in this emotional process. We also needed to decide if IVF was something we were ready for. IVF is a long journey – it is hard physically, emotionally and financially. It is a big decision to make and not for the faint of heart. Could we handle it? Could we afford it? Would our marriage last through it? Would our marriage last if we didn’t do it? If it didn’t work would our lives be content without a child? We spent the rest of the summer enjoying our time together and not talking about having a baby, although it was hard as it came up in every outside conversation we had with people. We were almost married a year and were not pregnant and people wanted to know why not. We would politely respond with “Oh, we are having fun trying!” Many times that wasn’t a sufficient enough answer and then would ask, “Are you having trouble?” We were always polite in how we answered people’s questions without going into detail of what we were doing, but all I wanted to do was tell people it was none of their damn business!

Many people thought it was their priority to know why we didn’t have a baby yet and then to give their advice as to how we could have children. “Don’t stress,” “It will happen on God’s time,” “Maybe you should go back to church,” “Why don’t you adopt.” Although not meant to be malicious, every time advice was given or someone would ask, all I wanted to do was lock myself in a room and cry. Many nights I did just that. People who have not gone through infertility don’t understand how hard it is to put a smile on your face as person after person hands you advice on how to have a baby when in your head you know why you can't.

After our one year anniversary, we felt like we were finally ready to do it. I had a timeline of when we wanted to do it and how it would work! As anyone who has done IVF knows – you plan and God laughs. We hit our first road block after scheduling John’s sperm extraction surgery that would really determine if we could even have children. They said we needed to start the IVF process first and we would do John’s surgery in line with my retrieval. So can we start today? No, we still had to wait. In the midst of all this we found out they found something on my uterus and would have to have another surgery. My surgery was scheduled for exactly one year from my last one. We were relieved to find out that what they saw was nothing to worry about and a result from my previous surgery. Finally a glimmer of hope, and because everything was normal, we could finally start our IVF journey. Medicine arrived the following week!

We started IVF the night of October 24th! We had a wedding that night, so I packed my needle into my purse and we went on our way. We had to leave in the middle of the wedding to administer the shot in the car. We can only imagine what people thought we were going to the car for! For the next two weeks we did shots every day. If we had somewhere to go, I would sneak away to the bathroom and do the shots. Every other morning I would have to go in to the doctor’s office and have an ultrasound and blood work done to see how we were progressing.

On November 4th, John went in for his surgery. This was a big one because we had decided as a couple that if this turned out negative, we wouldn’t go forward using donor sperm and that would be the end of our baby journey. After surgery was over, the doctor gave us the best news ever – it worked and we could possibly have biological children! It was a very emotional moment and we were so thankful for our doctor and for the nurse on our case that day. She hugged both of us and was crying along with us! The next day we went in for our retrieval, and they were able to retrieve 19 eggs!

The next day, November 6th, was my birthday. We found out that 12 eggs had fertilized and that in 5 days, they would let us know how many fully developed! The best birthday present anyone could have given me! 5 days later we got news we weren’t expecting – only 2 embryos made it through. We were very grateful for at least having 2, but it made our chances for everything limited. If things didn’t work out, we would have to start over. We were also told my levels were way too high to do a transfer, and we would have to wait for the next cycle.

Three weeks later my levels weren’t right and they didn’t feel comfortable doing the transfer. I was devastated. We kept hitting road blocks and I couldn’t understand why. I closed the door to my office that day and just cried. I was completely inconsolable. I had held it together for most of this journey, and I felt like this was just a slap in the face. My doctor called to hold me off the edge and said we could do it, but if it didn't work would I think back and regret making the decision?Another decision came that the timeline would put my transfer on the day of my sister’s wedding. Did we want to take that risk? We decided to hold off on it all until the New Year.

On January 14th we went in for our transfer! It just so happens to be the same day Alan Rickman passed away – Harry Potter is one of our favorites and the line “always” is a thing my sister & I always say to each other in hard times. So seeing that pop up everywhere that day felt like I had some magic on our side. Then came the 2 week wait! The most grueling 11 days I have ever been through, not to mention that there are pains and aches that you cannot determine as good or bad. It is a rollercoaster of wondering if the embryo will stick or not. I ate a whole pineapple, even the core, because someone told me that would help! During those 11 days they also tell you not to take a pregnancy test because the risks of false positives are so high. John had also made me swear I wouldn’t take one – he knows me too well! The day before our blood work I couldn’t resist... I quietly got up and went into the bathroom and opened the test so John wouldn’t hear me. Two dark pink lines showed up!! I started to cry but holding it together because I couldn’t let him know I took the test. I was happy in the moment – I was scared to hold on to it but I was happy. Even if the next day it came up negative, in that minute it said positive, so I was going to be happy! I lasted two hours before I told John. We stayed cautiously happy until the next day! First blood work beta was 484; second 1140; third 3446! We had our first ultrasound on February 8th to confirm a sac and baby. Both there! We were officially pregnant!!

On October 8, 2016, our beautiful Emilia Jean Amen was born at 8 lbs 10 oz! She is the light of our lives and we are so grateful to have her.


I wish I could say that was the end of our infertility story, but it isn’t. We have been trying to have another baby via IVF for more than year and a half, and IVF hasn’t been as nice to us as it was the first time. We had one more embryo left, so we thought we'd transfer it, get pregnant, and then be done with this whole saga. Well most of that is true – we did transfer our last embryo in October 2018, and we did get pregnant. But it wasn’t the end to our saga. At 8 weeks we went in for our appointment and the doctor told us the baby wasn’t growing the way it was supposed to, only to confirm the following week that we had lost the baby. To make matters worse, I wasn’t miscarrying on my own because of all the meds I was on, so I had to instantly stop those. After two more weeks I wasn’t miscarrying, so I had to have a D&C. That was our last embryo, so if we wanted another baby we would have to start the whole process again. So that is exactly what we did.

Another IVF cycle. Starting 6 weeks after our miscarriage, I started appointments – shots, blood work, doctors’ appointments, and ultrasounds would become our lives once again. Our results weren’t great – only one egg fertilized out of 17. Lucky enough that one tiny embryo made it to blast. Through this whole process I have always tried to stay positive, but our first miscarriage broke me in half. I felt like I couldn’t catch my breath after it happened, and that a part of me was missing. We had so many plans for that little life that never got to happen. So this cycle I was as cautiously optimistic as my heart would let me be. We transferred on April 12, 2019 and got pregnant! However, it was a good thing I was keeping my heart at a distance, because during infertility awareness week I found out I miscarried again.

So where are we now, almost a year later? "Limbo" is what I tell people! We ran out of health coverage midway through our last cycle. The decision has looked like this: do we pay for dance classes for Emilia, or do we try for another baby? Honestly, I felt like I closed my heart to it after my second miscarriage – I just don’t know if I can survive another one. So many women have had to go through way more than me and go about their lives again, but there was something about it that I am not sure I can go through again. We have the most amazing 3.5 year old who is just darling and the absolute best. John would very much like another baby, so I am able to put myself in that headspace... but like I said, we are in limbo until we make a decision. And that is okay! Yes, baby announcements tighten me up a bit, and I explain to people who ask that I am so happy for them, just sad for me. It’s a weird phrase, but that’s the best way to describe it.

As one of my infertility friends says, “No, infertility never leaves you. It changes you. It brings out strength you never knew you had, it brings out jealousy you don’t want to admit, it brings out a drive to never give up, and it brings our fear of what ifs. Forever.”

If you are still in the depths of infertility, please don’t give up! You are strong enough to face it all, even if it doesn’t feel like it right now. So light a candle, say a prayer, and know God has a plan for you no matter what it may be.

- Gretchen Amen

Instagram: @gretto723

Facebook: Gretchen Anne

 

☀️ CLICK HERE TO BUY THE BEST SOCKS ON THE PLANET TO HELP WOMEN WITH INFERTILITY! A portion of every single sale will go to an incredible woman experiencing infertility. They make the BEST gifts for women experiencing infertility to remind them they are loved OR to wear to your own appointments while working hard to grow your family to remind you that you have this community of women linking arms with you. You are incredible, sister!

CLICK HERE to join our safe, private Facebook group to meet other incredible women who are walking your path. ☀️

To read Emma Drennan's secondary infertility journey, click HERE.

 

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