A Miscarriage, Endometritis, and Waiting for the Other Shoe to Drop: Sarah’s Infertility Journey
“I’m shocked I never got bloodwork done prior to trying to get pregnant. I never got anything. I saw my OBGYN for my yearly pap smear and her advice was to have sex during ovulation. Bye, see you next year. I didn’t think to ask any questions because I didn’t know. I figured if she’s not concerned for a year, I shouldn’t be concerned until the year mark…But I had no idea what was actually going on with my body.”
“Infertility will never leave me. I didn’t stop being infertile because I’m pregnant.”
Sarah always considered herself healthy. She had regular checkups with her OB, had regular cycles, and felt her body was predictable. She was on birth control since the age of 14 and when she got her IUD out her cycle returned normally, and she started tracking her ovulation for fertile times. When she reached nine months and still wasn’t pregnant, she tried not to get discouraged but she was 30 years old, knew her body well, and felt something was wrong. Her doctor was adamant about her waiting at least a year before seeing a specialist and when she did hit the one-year mark, still not pregnant, it was finally time to see a specialist.
YOU MAY SEE THE SPECIALIST NOW
“We’re at 12 months and still no pregnancy. Yes, we were dedicated at tracking and actively trying and a year in, I was tired. It’s exhausting and it’s emotionally awful every single month when you get the negative test, or you get your period. It’s discouraging.
When we made an appointment with a specialist, I had no idea how long the process took. Even TV shows make it seem like you go in there, they put a baby in you, and you’re pregnant. Goodbye. But it took two more months with a specialist where we tried naturally with no success. They ran hormone panels, blood panels, genetic tests, inspected my tubes to ensure they were open, and evaluated my husband to see if he was healthy. Everything came back normal. I was frustrated because I almost wanted them to tell me something specific was wrong with me.
Given my tests results didn’t show anything suspicious, my age, and my anatomy being perfectly normal, my doctor recommended we start out with intrauterine insemination (IUI), which is less invasive and less expensive. It was a course of medication for five days, a trigger shot to release the egg, and then a turkey baster where they inject the sperm into you.
What I find insane is there was no real information provided by my doctor about the IUI procedure, including the chances of it working. I was very naïve for the first round and went into it with the idea that it was a treatment, and I would definitely get pregnant. Everything was looking good on my scans, my bloodwork looked phenomenal, the procedure went smoothly, and I had high hopes that it was going to work on the first try. But it failed.
It was after that first failure that my doctor then shared that sometimes it takes a couple of rounds. A detail he could have shared with me beforehand. His recommendation was doing another IUI but at this point I had little patience and wanted to go directly to IVF. My husband suggested we try just one more IUI and we made an agreement that we’d try one more IUI and if it didn’t work, we’d move on.
I heard the odds of an IUI working were better after repeated attempts so, again, I went into the second round thinking this was going to be the time it worked. We tried again and it failed again. At this point, it’s a year and half into the process, I’ve had two failed treatments and I still don’t know why I can’t get pregnant. I was done with IUI’s. I couldn’t do it mentally and we had a financial cap on our insurance that didn’t make it a smart decision.”
“You are exposed, cut open, going through an incredibly intimate process and it is surprising how little information we are provided.”
IT'S TIME TO START IVF
“We paused our treatments and went away for five weeks. We drove out to Arizona, knowing that at the very start of 2021 we would jump right into IVF. While away, we got some of the paperwork done, formulated a plan with my doctor and in January 2021 we started the IVF process.
The first step, the egg retrieval, was a very uncomfortable process. It didn’t help that given COVID, I had to go through the process alone. Infertility is already such a female focused disease but because of COVID my husband couldn’t come to appointments or surgeries. We went through the egg retrieval in February 2021 and were incredibly lucky to have gotten two genetically normal embryos as a result. That was a win for us.
We had to wait a month to transfer and ended up doing a frozen embryo transfer in May 2021. Much to our surprise, our first try worked, and we were thrilled! It was a genetically normal embryo and our doctor felt good about it, as genetics is a huge component. But then much to everyone’s surprise, I miscarried. My doctor’s response: ‘That’s not supposed to happen’. My response: ‘No shit.’
I’m sobbing on the phone with my doctor after I miscarry and he suggests I rest, take care of myself, and call the following Monday to formulate a plan, as that moment was never the best time to discuss next steps. But in that emotional state, I was just so frustrated and wanted to immediately put the other embryo in. I didn’t know what to tell him. I was doing everything that I could to get pregnant, and it wasn’t working. My husband knew I hated delays but asked that we get further testing.”
CHANGE OF PLANS: I HAVE A RAGING INFECTION IN MY UTERUS
“We went to my doctor about additional testing, and he listed a few tests but told us it was pretty rare that I’d have anything. Specifically, he was going to test for an infection in my uterus and said it was unlikely since I hadn’t shown any other symptoms. The test was described as a fairly simple biopsy that they don’t give you any medication for but just go in and cut. With my husband’s encouragement I went ahead with the test and told him he’d have to take me out to dinner when they found that there was nothing there.
I go forward with the biopsy and completely unmedicated they put my feet in the stirrups, go in, and slice out a piece of my uterus. I was screaming and they were completely unfazed. I get home and am so angry, telling my husband that they cut out a piece of me, all to tell me that there is nothing wrong with me…again. Lo and behold, I have a raging infection in my uterus.
I had Endometritis (aka: a hostile uterus). My doctor is just as shocked because a lot of times people have horrible symptoms. Prior to the biopsy, I had had a lot of other imaging and bloodwork but none of that would have shown the infection. They cannot give me a definitive answer, but I could have developed endometritis when I had my IUD removed. Anytime there is something going in and out of your uterus, you introduce the opportunity for infection.
I went on antibiotics for 14 days, repeated the biopsy, and they found that the infection was not gone. You must be kidding me! I had to go on another course of antibiotics that first and foremost is called Flagyl. Who named that? And it was a hardcore antibiotic. I go back in for a third biopsy and the doctor calls me with good news and bad news. Of course! The infection is gone but they found polyps. I had to have surgery to clear my uterus and the polyps and then I was finally cleared to transfer again.
Once cleared, we went through the frozen embryo transfer protocol again, which was another five weeks and in September 2021 we transferred our second embryo and it worked! It took over two years by the time that we transferred our second embryo and finally had success.”
GOING FROM INFERTILE TO FERTILE
“It was a completely new journey of being infertile and then fertile. I couldn’t switch my brain fast enough from identifying as infertile and then being pregnant because infertility never really leaves you. When I started sharing my journey very publicly and openly, I learned people have no idea how long this process takes, they don’t understand the amount of waiting involved, how many injections are involved, or that a hostile uterus is even a thing. I didn’t either until I had one! People are very surprised by a lot of it, and I was just as surprised as I was going through it myself.
I thought you take a few shots, you get your eggs and sperm, combine them, put them back in and you would be pregnant, all in a few short weeks. Instead, the process to get to our embryos was about four months. There’s just no information about it and it wasn’t until I started connecting with others on their own fertility journey that I learned this was normal and I wasn’t alone in my experience. There is a need for more conversation because sadly, you will experience infertility, or you will know someone very close to you that will. And it is hard.”
INFERTILITY CLINICS CAN FEEL LIKE A BUSINESS
“I loved my clinic, and I loved my doctor. But at a certain point, it started to feel like a farm in the clinic. It can feel more like a business but that’s what they are there for. They exist to get people pregnant. Every time I was in the waiting room there were almost 20 people in there and the office was fast, fast, fast from start to finish. If you had a question, they would answer it, but it always felt like they were trying to get you in and out as fast as possible.
You have to do a lot of research yourself. You have to come prepared with every question you want to ask because if you ask them what they would recommend, they will basically say nothing specific. You must ask, ‘What are your thoughts on endometritis?’, or ‘What are your thoughts on ERA testing?’. There’s no pamphlet of information to read or easily accessible source of information. Now in retrospect, I could have asked so many other questions during those procedures or asked for so many other tests.
I understand that not one infertility journey is going to be the same as another, making it difficult to make general recommendations. However, it is abysmal how little knowledge you are provided at the clinic. You are exposed, cut open, going through an incredibly intimate process and it is surprising how little information we are provided.”
“You go into each treatment with anxiety knowing this is just for a chance…there is simply no guarantee that it will work.”
THROW PASTA AT THE WALL AND SEE WHAT STICKS
“The focus of the clinic is to get you pregnant, especially when they are not finding anything on conventional tests. But a lot of us end up in this unexplained infertility bucket and at that point it can feel like they throw pasta at the wall and wait to see what sticks. That’s how I felt with mine.
When I think from their perspective, I understand that they didn’t know what was wrong with me any more than I knew. I have a little comfort knowing that my doctor believes the infection was probably a big factor in my journey, but I still can’t say that it was THE thing preventing me from getting pregnant naturally. There are still lingering thoughts and ideas that I’m concerned about even though I am pregnant. I wonder if there is something in my body that they just never found. Either way, it’s discouraging and uncomfortable still not having answers.
When you go in for treatment, they are barreling ahead with the mindset that various treatments can work. I get that. But they aren’t transparent with the likelihood of the different treatments working and for your case specifically. We need more transparency!
Sometimes clinics are so focused on the medical treatment, the procedure at hand, and what they believe needs to be done. They forget that we are people struggling to understand what is happening in our own bodies. We are struggling to understand why something that we were born to do, have babies, is something our body cannot do on its own despite taking care of yourself, exercising regularly, eating well, and having normal cycles. Every sign indicates that I shouldn’t experience any problems having a child naturally. Yet, this is what happens to many of us going through infertility.”
INFERTILITY IS NOT AN OLDER PERSON PROBLEM
“People are shocked when they learn I struggle with infertility and I’m 30, not 40 years old. But it’s important for others to realize that this happens to individuals young and old, and we don’t know why. Many people I know who are also struggling with infertility are around my age. But people often view infertility as an older person problem, an overweight problem, or an issue that someone experiences when they have another medical issue that prevents them from getting pregnant. Many people are like me, younger and generally very health, and it surprises people.
This is where I get the most resistance around my infertility journey and people ask if I’m sure we really need infertility treatment. People don’t realize that it’s more common than we think, and they look at me and see no reason that I should be infertile. Even more frustrating is that they think there is no way I’m actually infertile or question if I’m ‘relaxed enough’, ‘trying hard enough’, or even ‘thinking too much about it’.”
PHYSICAL PAIN WITH A PURPOSE
“I’ve never been squeamish and love the disgusting medical stuff. I did all my injections myself because my husband is not great with blood and needles, and I also wanted the control. With that, giving yourself daily injections is physically very uncomfortable. Once you start doing it consistently, it does become more normal. But you do have the thought each time: ‘oh my gosh, I’m about to stick this needle into my butt or my stomach.’
The egg retrieval process is physically very uncomfortable. Your ovaries are 100 times the size that they should be, and I had a really hard time post retrieval. They go in and extract every single egg with a needle and I was in a lot of pain afterwards.
But the physical pain is manageable. It’s something that I knew was for a purpose. I knew going through this process that physically, it would not be the most fun I ever had and now I can say that it was tolerable. I was in some pain but was never doubled over or crippled for days.”
WAITING FOR THE OTHER SHOE TO DROP: THE EMOTIONAL BURDEN
“Emotionally, infertility is 7,000 times harder than anything physical I went through in the two-year period. I think a misconception is the success rates of treatments. I don’t think I’ve met anyone that had an IUI work on the first try and I know plenty of people where it’s taken numerous rounds of IVF cycles and transfers to achieve success. But when you start, you are naïve and then you quickly become jaded because you start to know too much.
You go into each treatment with anxiety knowing this is just for a chance…there is simply no guarantee that it will work. Every single step you take forward has you looking at the one in front of that because you now know that there are so many ways that the current step could go wrong. Your follicles might not start growing appropriately during your stem phase or you could prematurely ovulate them, and in both cases, not even get to the retrieval because it’s canceled.
In our case, we retrieved 25 eggs and ended up with two embryos. Our attrition rate was huge, and the worry didn’t stop there. Next was the transfer and that only has about a 60% chance of sticking. If you get pregnant, you start worrying about making it to the 5-week scan, then the 7-week scan, and then hearing the heartbeat. There is always something to constantly worry about and at each step of the process, I was always expecting it to go wrong. It’s hard to not wait for the other shoe to drop because, for so many of us going through infertility, the shoe has dropped for years and years.
Our second transfer worked, but my anxiety was still there. For the first 12 weeks, I was a complete wreck. I failed at getting pregnant for so long, I couldn’t wrap my head around being a pregnant person. I was almost in denial that I was pregnant, and it took the joy away from me.
People look at me and say I am so strong. I’m strong for sharing my story and journey. I’m strong for the shots and giving myself the shots. But I’d do those shots 1,000 times over in place of the crippling anxiety that I feel at all times.”
“It took over two years by the time that we transferred our second embryo and finally had success...I couldn’t switch my brain fast enough from identifying as infertile and then being pregnant because infertility never really leaves you.”
FINDING THE STRENGTH TO MOVE FORWARD
“I have always felt better having a plan. But you don’t have much control of this process. Basically, the only amount of control you have is showing up to your appointments, taking your medications, and taking care of yourself as best as possible.
My miscarriage was the most difficult thing in the entire universe, but we had made a plan that we would use the next embryo and if it failed, we would do one more round of IVF. If the worst-case scenario happened, I knew what we were going to do, and it helped me mentally prepare. I’m not someone who could continue with multiple rounds of IVF, and I give people who have done 7, 8, or 9 rounds of IVF so much credit emotionally, physically, and mentally. I just knew it couldn’t be me.
Community is the other thing that has gotten me this far in our journey because I can’t imagine going through infertility isolated. I needed people and sharing our journey has introduced me to hundreds of people that have been in a similar boat. My friends who have gotten pregnant naturally are very supportive. But it’s the people that know how it feels to step foot in a fertility clinic that truly get it. You can reach out to them and say you need to scream just for a minute, and they simply say, ‘go for it’.
You surprise yourself on this journey…another day comes, and you make the choice to get up and keep going even when it’s hard. But at the end of the day, taking another step forward on this journey was the only choice I had. If we wanted a child, I had to keep doing this. And this was the plan until I got to a point where I needed to cut it off and we needed to look at alternate options like adoption, surrogacy, etc.”
FINANCIAL BURDEN OF INFERTILITY
“We are fortunate that we had insurance coverage at all because I know plenty of plenty of people who self-pay for everything and it is incredibly expensive. Coverage is up to the insurance provider, but also up to the employer and there are a lot of different ways that employers do this. If you’re lucky, there are a few companies that will provide 100% coverage no matter the circumstances, with no limit on the number of rounds, for example. But that is not very common.
We had a type of insurance where I had two full pies representing my available coverage. It was a deduction system where an IUI cost a fourth of a pie and a retrieval was half a pie. Once we used up the pie, we were done. And that went quickly. Even with insurance, there were things not covered, and we’d receive an unexpected bill for $2,500 USD. No one could ever say why something wasn’t covered but we were lucky that so much of our treatment was covered. When I tallied up our bills, our total would have been well over $100,000 USD. With coverage, we have paid around $15,000 - $17,000 USD out of pocket. Some of that is for medications that insurance didn’t deem necessary for infertility treatment even though my doctor prescribed them.
I know people who are easily $250,000 USD into their journey. There are people I know who take second mortgages out on their homes and take out loans. It’s horrible because no one would ever choose to go through this. Nobody! If I had diabetes, insurance would have no problem covering my medications. If I got cancer, they would cover my chemotherapy. But even though I have been diagnosed with infertility, infertility is still viewed as elective, even by insurance companies. I don’t know if it’s because having a baby is not technically a life-or-death situation but, medically speaking, I still need these procedures and medications to have a baby.
I’m happy I had coverage in any sense of the word, but it was still stressful. I even had a month delay at one point because my insurance company was deciding if I needed my retrieval. Yes, I need the retrieval! How else am I supposed to get my eggs out? You are constantly fighting with insurance companies and trying to get clear answers for why something is not covered. My doctor prescribed a medication for fertility treatment and the insurance company said it was not a fertility medication so they wouldn’t cover it. I would call my other insurance company and their response was that my claim was a fertility issue and therefore my fertility benefits needed to cover it (even though they also said it wasn’t a fertility issue). And even with fertility benefits, the maximum can be $20,000 USD, which you can blow through in medications and one retrieval alone. The insurance system is confusing, difficult, and overall, just abysmal.
INFERTILITY IS NOT ELECTIVE
Women are seen as beings who are just supposed to be able to get pregnant naturally and have a baby easily. When we can’t, this view makes it feel like it’s our fault. When insurance doesn’t consider infertility treatment as a medical necessity, it increases the stigma around people that go through infertility as something that we have done to ourselves. I couldn’t get pregnant on my own for 14 months. Clearly, I needed some type of medical intervention, which there are medications and surgeries for. I don’t understand the disconnect there.
I think we are making some progress with some companies now realizing that infertility struggles happen to a lot of people, and more people than I think is realized. I’m hopeful that as the stigma around talking about infertility decreases, insurance companies will also start to adjust their policies and coverage. I could spend a lot of money on so many different things that I would love rather than injecting myself with hormones every five seconds. The financial burden is awful.”
FOR THOSE WOMEN WALKING THE INFERTILITY PATH:
“For those individuals that are either starting their infertility journey or going through their journey and having a hard time coming off a failure…advocate for yourself! And if you find that even when you do advocate for yourself, your clinic brushes you off, that might not be the clinic for you. Go to your appointments with questions prepared.
Find your support system, whether you are comfortable doing it very publicly or anonymously. There are Reddit threads where you can stay relatively anonymous, or you can create an anonymous Instagram account where you don’t post photos of your face. But don’t go through infertility alone. Even if you just join a community to view and read other stories because you aren’t ready to interact, just make sure you surround yourself with people who have also gone through infertility.
Lastly, define your boundaries. Find your people and don’t feel the need to talk about your experience with someone who doesn’t make you feel good. You don’t owe it to anyone and just because you are talking about the experience with some people doesn’t mean you have to speak to everyone about it. There’s absolutely no shame in making clear boundaries between those two different individuals because you are already going through enough. You don’t need people questioning if you are doing everything you can or advising you to just go to Mexico and have a margarita to relax. Know who makes you feel good and empowered and who doesn’t.
Advocacy, community, and boundaries…those are the three things that I recommend.”
You can continue to follow Sarah’s journey and her continued support of others battling infertility on Instagram @sarahdjohnston