Recurrent Pregnancy Loss, Endometriosis, and Becoming Your Best Advocate: Meg’s Hard Fought Infertility Journey
“Even if I stop trying to have a baby, I will still have endometriosis, it will still incapacitate me every month, and I will still have to live in the medical world. It has impacted my life and still needs to be treated regardless of whether I am actively trying to get pregnant or not. We must treat infertility and the diseases causing infertility holistically as a whole person issue.”
“When you are surrounded by people who have been through a similar experience as you, you feel both heard and understood and there is so much comfort in that feeling.”
Meg always thought there would be an issue and that getting pregnant would be harder for her. She had struggled with symptoms and issues her whole life, and Meg had an instinct that her body had been trying to tell her that something was not working properly. It was after a few losses that Meg was finally diagnosed with things like endometriosis and her long journey with infertility began.
OUR INFERTILITY JOURNEY STARTED WITH A MISCARRIAGE
“Our parenthood journey started optimistically. I got pregnant for the first time when I was 33 years old after five months of trying. Once pregnant, I did what I think most people do in a first pregnancy with no issues and I downloaded all the apps, signed up for the mom’s groups, bought all the pregnancy books, and took the weekly photo of my belly. My husband and I had started talking about names and felt so grateful that we had dodged a bullet from the potential problems I could have had due to period problems I had struggled with my whole life.
That all ended at our seven-week appointment. The movies show miscarriages as sudden events but ours was drawn out over a few weeks. We went to our seven-week appointment, and it was the first time the growth was off from where they expected and suggested that our math might have been wrong. However, I’m a Type A person and I can tell you by the minute when we had sex. We went back into the office a week later to do a blood test and the baby still wasn’t growing as quickly as they would have liked, and we still could not find a heartbeat. My human chorionic gonadotropin level (HCG) was increasing but not quickly enough and then a week later my HCG started to drop. We knew that we were miscarrying.”
THREE MISCARRIAGES IS MORE THAN BAD LUCK
“After the first miscarriage, all the doctors and everyone around me kept saying miscarriages happen…they’re common. We had one miscarriage, and a lot of people have one miscarriage. We remained optimistic and didn’t think we needed to pursue additional help because our doctor thought it was unlikely to happen again.
But it did and my OBGYN said ‘you’re really unlucky’. It wasn’t until our third miscarriage that my OBGYN finally said we could do a recurrent pregnancy loss panel but also said this was out of her area of expertise. We had gone from my doctor telling me there was nothing to worry about to my case being outside her expertise. It took a year of three losses and heartache before anyone saw our case as a medical concern and stopped saying we just had bad luck.”
FINDING AN EXPERT IN RECURRENT LOSS
“We wanted to find a reproductive embryologist (RE) who focused on miscarriages because our issue was not getting pregnant but staying pregnant. I found that so many RE’s focus on helping patients get pregnant but there are fewer experts, clinics, and studies focused on recurrent pregnancy loss. It was after talking to people from Facebook groups and Instagram that we found a clinic where they had a better statistic for patients with recurrent loss. Clinics typically show their pregnancy rates, but for us that’s not our measure of success and it’s the live birth rate success that matters even more.
My very first appointment at the new clinic was a saline sonogram, which is uncomfortable, painful, and awful in its own way. I’ll never forget the experience: I was by myself due to the pandemic, a nurse was holding my hand because I was nervous and cramping, and the doctor who was doing my sonogram, not my regular doctor, was taking what felt like a particularly long time. He finally looks at me and says he’s been doing this for 30 years, is retiring in two weeks, and has ‘never seen one of these.’ He’s excited and I’m left wondering what he’s seeing and what it means for me and trying to get pregnant.
That was the first indication that I might have an abnormality in my uterus shape and an MRI confirmed that I have a Mullerian abnormality in the shape of my uterus. However, they also determined the abnormality would not be the cause of my losses and we were still without answers to my recurrent losses.”
“My doctor was of the mindset that statistically, a loss after the first transfer happens, but I was sick of being part of a statistic.”
THROWING SPAGHETTI AT THE WALL
“Our very first approach was very much by the book, with a standard protocol that felt like throwing spaghetti at a wall and hoping it sticks. It felt like we were playing a numbers game and I wish I’d been clearer with my doctor at the beginning about what we could handle financially and emotionally. It seems like doctors approach your treatment with the idea that you’re going to continue to try with multiple retrievals and transfers. I understand medically where they come from and understand that we can’t test for everything under the sun. But at the same time, I don’t have the mental capacity to do 10 cycles, nor do I have the financials to do it 10 times. I wish I asked at the start of this journey what the approach would be if I had one chance.
The assumption was that I was having recurrent losses because of chromosomal issues, which are the most common cause. The plan was for us to do standard preimplantation genetic testing (PGT) and only transfer embryos that tested normal. We did our first retrieval, tested our embryos, transferred, and then I got pregnant with our first frozen transfer. We miscarried and I was immediately frustrated because I did what I was supposed to do, we went through with IVF, and I still miscarried. My doctor was of the mindset that statistically a loss after the first transfer happens, but I was sick of being part of a statistic.”
A FIFTH MISCARRIAGE EMOTIONALLY BROKE ME
“My doctor was ready to move forward with the next transfer and I insisted that we first do additional testing to eliminate some reasons as to why I couldn’t stay pregnant. The compromise was to do some biopsy tests that didn’t include surgery, and I took some antibiotics as follow-up to those results. We moved forward with the transfer, and we miscarried again.
This fifth miscarriage was the loss that emotionally broke me because not only had it been years of trying, but this was also the transfer that we made it the furthest, to around 12 weeks, and we had heard a heartbeat. We knew the sex and we felt connected, thinking about her personality and activities we’d do together. But at nine weeks I had a subchorionic bleed that didn’t heal like many typically do. It had nothing to do with my endometriosis or my anatomy and it was just bad luck.”
GATHERING THE OPINIONS OF DIFFERENT EXPERTS
“After this fifth loss, I stopped everything and we did a tour of consultants before I decided what to do next, finding five different clinics with completely opposing opinions. The science behind infertility treatments is far along compared to 10 years ago, but in reality, it’s not that advanced and there is still a lot of trial and error involved. It’s a lot of playing the odds and a numbers game and eventually one of the approaches works but sometimes we never fully understand why.
I don’t think a lot of people realize you don’t have to change your doctor to receive input from other experts, and you can engage with them through consultations. The consultations can cost anywhere from $300-$800, but I learned so much from each consultation that we did. I sent each clinic my medical history with all my information, and included a reproductive immunologist who has created part of the protocol for my next transfer.
I took everything I received from those consultations back to my RE and asked for input on what they would or would not do among the different feedback. Walking in with expert opinions helped me facilitate the conversation with more grounding than saying I saw something on Instagram, and it shaped how we are proceeding forward with next steps. We have done a lot since my last loss, and in addition to more tests, we also did our final egg retrieval and a couple of months of Lupron Depot to help treat the endometriosis they found.”
“No one likes to say it out loud, but I was worried that something I’ve wanted my whole life was never going to live up to my expectations because of how hard it was to get there.”
THE TRAUMA OF INFERTILITY
“I don’t think fertility trauma is talked about enough. We see the needle photos with the baby in the middle and that’s not the reality for everyone. I think it sets up a standard for people who don’t deal with infertility and creates the assumption that if you do the work, eventually, you’ll get the baby and you’ll get the rainbow. From there come the comments that mean well but are not helpful like, ‘I believe it’ll happen for you’, ‘sending positive thoughts’, or ‘just relax’. All any of that does it make those of us who have been in this fight for years feel unheard and feel like our grief isn’t real or valid.
One of the biggest feelings that I have experienced every day is wanting to simply feel whatever I truly feel in the moment. I don’t want to be told not to feel the pain, grief, or sadness. The reality is that infertility treatments may not work for me, and I don’t think of that as quitting. I think you eventually must choose to pursue a different life because you run out of money and/or you run out of time. Time is a big fear of my own because when I started this journey, I was 32 and there was no issue getting pregnant, but I couldn’t stay pregnant. Now I’m 36, considered geriatric, and I’m frustrated when people who don’t fully understand my situation tell me it’s going to be harder to get pregnant now that I’m older. Little do they know I did start early but it simply didn’t work for me.
When I started seeing my therapist, the work was focused on my fear that if and when I had a baby, I would bring the trauma of getting to that point into my parenting. I was worried that I would never be able to be fulfilled as a mom because of how traumatizing it was to become a mom. No one likes to say it out loud, but I was worried that something I’ve wanted my whole life was never going to live up to my expectations because of how hard it was to get there.
My fears then turned into worries that I would struggle to love my child for how hard it was to have the child. They were these raw feelings that somebody who gets pregnant easily may not battle with as frequently because they wouldn’t necessarily resent their child due to the hardship of creating them. Therapy has helped me work through these darker feelings and now my goal is learning skills of acceptance to cope with whatever life may turn out to be.”
“We must be able to talk about infertility not as a temporary blip in our life, but as something that permanently impacts your entire life with lasting effects.”
INFERTILITY IS ALL CONSUMING
“With regards to parenthood, I’m not yet a place of saying I’m ready to accept a child free life or to start looking into different pathways to parenthood. I completely respect and understand people who reach that decision because the path of infertility is truly all consuming. When my therapist asked me to list all the things in my life that bring me joy, I looked at everything I listed and realized it had been tarnished in some way from my infertility battle.
My friendships have changed and while I have certainly gained friends from the infertility community, I have also lost friendships. My career, something that I love and have worked hard for, has been challenged by the amount of time, money, and energy I have had to pour into it while also going through my struggle with infertility. My marriage is also different, and I think everything changes in your life in a way that you’d have no idea about until you start your own journey.
Even if you do find success through infertility treatment and you are able to have a baby, I don’t think everything falls back into your old ‘normal’. We must be able to talk about infertility not as a temporary blip in our life, but as something that permanently impacts your entire life with lasting effects. I’m never going to have a day in my life going forward where I don’t think about these years.”
SHAME AROUND INFERTILITY TREATMENTS
“There is still a stigma around doing infertility treatments affiliated with shame. When someone is suffering from infertility, there are still so many questions related to why we do IVF or why we don’t just adopt. Adoption is a wonderful pathway to parenthood, but it also comes with its share of trauma and costs that are often not fully recognized. I know for myself and my husband that if we were to take the adoption route there would be a lot of healing we would first need to do because it wouldn’t be fair to bring any child into a home where they were supposed to heal me. That’s not why you adopt.
There are a lot of reasons that people choose fertility treatments, and all reasons are valid. No one ever sees a pregnant woman or someone with a baby they had unassisted and asks them why they didn’t adopt instead. It’s only when you must try a little harder at becoming pregnant that we question why they didn’t adopt instead.”
“We must be able to talk about infertility not as a temporary blip in our life, but as something that permanently impacts your entire life with lasting effects.”
FINDING A WAY FORWARD FROM THE DARKEST MOMENTS
“Infertility has been a roller coaster. In my darkest moments, I could have a morning where I feel a little bit more like me and I go with that as best as I can. Maybe I feel up for a walk that day or maybe I feel up to do dinner with friends. But then I accept the days when I wake up and I just feel so heavy and blue for no reason, like I don’t have it in me, and I allow that day, too. I might have what feels like the darkest day and I might wake up and feel so much heartache that a knot is stuck in my throat, causing me to want to cry all day. On those days, I remind myself that I have felt that way before and yet, there were days after it that I felt okay. So, on that hard day, I will allow myself to feel that way, knowing it won’t last forever. The okay days are coming.
But when I’m feeling good, it’s hard not to think about how I might feel bad again and I also must remind myself that everything ebbs and flows. Some days are going to be harder than others. Maybe today I want to lay in bed reading fantasy novels, and I’ll let myself do that.
I do go to therapy, but it’s not a magic trick. It does give me someone to speak to and I think it’s important to go to a therapist that is specific for fertility, so you aren’t teaching them about all things fertility related.
The Instagram community has also been helpful in that it’s the one space that I have found where people immediately understand what I’m feeling on this journey. Even more, they respect how I’m feeling and allow me to live in the feeling that I’m having that day. I’m grateful for that community.”
HAVING TO BECOME AN EXPERT IN FERTILITY
“One of the most shocking parts of this journey is how much I have had to become what feels like a medical student to get the right care or to be able to make informed decisions about my treatment. I now have an immunologist protocol and an endocrinologist protocol and there are a couple of pieces of this process where these doctors vehemently disagree with each other.
I bring all the immunology work to my endocrinologist and show what’s being proposed and then ask for their input. With every medication you must weigh the possible benefits and the possible risks, but no one makes that decision for you. There is no one who can tell you definitively what your issue is and there is no one who can tell you a specific solution.
When I started my infertility journey, I didn’t understand that no matter how many experts and doctors I speak to, no matter how many studies I do, or how many clinics I visit, my journey would still be filled with so much unknown that I would be left to hold on my own. Despite talking to so many different experts, I still must google every medication to learn about the risks and weigh those with the benefits. I have to figure out what tests to asks for and when I receive the tests results, I have to teach myself what each result means to me specifically.
Trying to understand every aspect of my treatment, as if I were a medical student, is hard and exhausting. But we also can’t sit back and allow doctors to do what is standard and by the book. We must do the work to become informed to then be an advocate for ourselves.
I don’t treat social platforms as medical advice at all, but I do appreciate them for the commiseration and the emotional support. I have found it helpful for first-hand experiences and advice for things like how to handle the hot flashes that can come when you are on Lupron. I’ve also found advice from others who have gone through multiple losses and learned about new doctors and clinics specializing in recurrent loss that have become new resources. I’ve reached out to some of the doctors on Instagram for consultations that I could then take back to my doctor and ask for their input.”
“We must do the work to become informed to then be an advocate for ourselves. ”
FINDING SUPPORT OUTSIDE FAMILY AND FRIENDS
“I don’t keep my family and friends as up to date on our journey as I used to. After so many years and so many procedures, it started to feel very tedious and like a second job to keep everyone informed. There are only so many times you can hear ‘I hope it goes well’, knowing they don’t fully understand what I’m going through.
But my Instagram followers knew when I was transferring, and I’d wake up the morning of to a dozen messages letting me know they were thinking of me. They would tell me to enjoy my acupuncture nap after the transfer, understanding in only the way they could, and it made me feel like I had a cheerleading squad behind me.
Loneliness was my entire reason for starting my Instagram account. I could be with a group of friends and feel completely lonely and homesick simply because they did not understand what I was feeling or going through and I didn’t want to talk to them about it. I didn’t want to be a burden to my friends and when I’m with the community I’ve found online, I never feel like a burden. I’ve connected to so many people and while I still have feelings of loneliness, I’ve noticed those feelings being less frequent. When you are surrounded by people who have been through a similar experience as you, you feel both heard and understood and there is so much comfort in that feeling.”
“You’re allowed to feel hopeless, angry, frustrated, AND joy!”
FOR THOSE WALKING THE PATH OF INFERTILITY
“Let yourself feel exactly what you are feeling. If you’re feeling hopeless, you’re allowed to feel hopeless. If you’re feeling angry, you’re allowed to feel angry. If you’re frustrated that treatment worked for others but not you, allow yourself to be frustrated. It doesn’t make you a bad person to feel bitter when you watch others achieve what isn’t happening for you. It makes you human.
Similarly, if you find yourself not thinking about your grief, longing, etc. and then it comes rushing back to you and you realize you were just laughing, remind yourself you can feel joy, too! You’re allowed to feel hopeless, angry, frustrated, AND joy!
Lastly, never hesitate to send a message, even to a stranger. If you’re feeling heavy feelings, hard feelings, or angry feelings, and you need to shout them into the void…I will be your void. Let me hear them and hold space for them. I will probably do the same to you.
Those of us that are still on our infertility journey and have been for a while feel left behind. We have made friends with people in the infertility community who are now parents and some, parents twice over. I know people who I met going through their first transfer at the same time I was going through my first transfer and now they are having their second child. I’m happy for them and I am angry for me. So, if you too feel left behind or left out, come talk to me and we will get through it together.”