Neenah's Story

Trigger warning: Pregnancy

I was already 35 when we started trying to have a baby. It was January 2015, I had just gotten married the November prior. We tried for about 7 months before I sought out help from my OB/GYN. It took more than 4 years to figure out why I was struggling to conceive and ultimately found out that endometriosis was the cause of my infertility. 

I’ve learned so much over these past years about myself, my body, as well as some hard lessons about why it can be so challenging to get a proper diagnosis for a disease that affects so many people. If my story is too much of an emotional burden to read, skip to the end for five takeaways that I’ve learned from this process. I hope they can be of help to you on this journey.

The beginning of a long journey

In July, I started a conversation with my OB/GYN about trying to conceive and the irregular periods I was having. Nothing remarkable came from that initial checkup. Hormones looked fine, ultrasound looked fine.

Later that fall, we moved to the Bay Area, so I let the dust settle from the stress of moving and did some research before I planned to see a fertility specialist. I had some fertility coverage with my insurance provider, so since we didn’t have much luck with the OB/GYN, I figured we should go straight to a reproductive endocrinologist (RE or REI) when we got settled in our new city. 

I went through the normal workup. “The numbers” were normal for my age, nothing alarming. Per standard protocol, I did two rounds of intrauterine inseminations (IUIs). I responded well to the medications and had a few good sized follicles. But no pregnancy. I wasn’t too concerned, I knew the success rate for IUIs is low so  we decided to pursue in vitro fertilization (IVF) in Nov 2016.

Starting IVF: Alarm Bells

For my first retrieval, I responded OK to the medicines. But my follicles were all over the place in size. The doctor retrieved 5 eggs. Not as many as I hoped for, but enough to give us a chance. The next morning the doctor called to tell me that none of the eggs were mature. That meant we didn’t have a chance to fertilize or transfer anything. I was crushed. I didn’t even know this was a possibility.  Something seemed strange. This was my first alarm bell. I decided to take a break after the first round. There was still a lot of stress from the move. I tried working on my health—I tried things like acupuncture, keto diet, supplements. 

By Spring I was ready to try again. After two false starts due to a leading follicle and cyst, I completed another retrieval in June. This time, only 3 eggs were retrieved, but at least they were all mature. One embryo grew to a good looking blastocyst so we decided to transfer it right away. But it didn’t implant. This was my next alarm bell. 

Work and travel obligations meant we needed to take another break. When I went to see my doctor in October of 2017 to discuss starting a cycle for a third egg retrieval, I learned I had a spontaneous pregnancy. We were both shocked. The doctor excitedly rushed me into an ultrasound room to verify and estimate conception date. But the ultrasound revealed there was nothing in the uterus. It ended up being an ectopic pregnancy. Another alarm bell. I had to wait 4 months before officially starting cycle #3. This was a devastating experience for me; the one and only time I ever had a positive pregnancy test and it was not a viable pregnancy. The delay in IVF treatment only added insult to injury. 

In my third cycle we tweaked so many things to the protocol. Things looked promising. But yet again, disappointing results: only 1 mature egg retrieved.  The egg fertilized and grew to blastocyst.

I always wanted more than one kid, and at this point, I was 38, so I decided to freeze the blastocyst. I wanted to try to bank some more embryos before we went through transfers. After months of research into what was causing my immature eggs, I decided to switch doctors.  I completed 4 rounds of mini-IVF and banked six 3-day embryos, which gave me enough confidence to start the transfer process. 

Taking matters into my own hands

So here we are, with my army of embryos and blastocysts, and we are still in this “unexplained category” which was frustrating as heck. Since I had worked so hard to get all these embryos, I wanted to do everything I could to ensure my uterus was  a hospitable environment to support implantation.  

Around the same time, my younger sister was also trying to get pregnant. Her OB/GYN had found a large endometrioma on her ovary. She underwent a laparoscopic surgery and we knew for certain that she had endometriosis. This prompted me to start researching. I knew endometriosis tends to run in families. Was this something I possibly had? Could it explain all the difficulties I experienced during IVF? I tried to learn everything I could, but there was very little official information. Most of the information out there was from Facebook groups and forums. 

But the more I learned, the more I began to understand— endometriosis is not just pain. 

I brought up endometriosis to my REI and was told that even if I have endometriosis, the treatment for fertility is still IVF. I understood the protocol, but something about having trouble getting the eggs in the first place and being labeled with “unexplained infertility” nagged at me.  

I thought, “If I have endometriosis, there’s an issue. I shouldn’t be working around it for the purpose of child bearing—that seems so short sighted. I’m not addressing the root cause.” Endo seemed like this big glaring thing that could possibly account for so many of the issues I was experiencing. I needed to know if I had endometriosis or not.

By late 2018, I had gone through so many procedures, that I had already met our out of pocket costs for our insurance. So I didn’t really have anything to lose in seeing an endometriosis excision specialist. The specialist said I had enough symptoms that I would be a good candidate for a laparoscopy. 

Opting for surgery to diagnose and treat the endometriosis was the last box left unchecked before I felt comfortable continuing with IVF treatment. I felt I had enough indicators that there was a very strong possibility I had endo.  Unfortunately, in the world we live in today, surgery is the only way to confirm it. 

I had my laparoscopic excision surgery in December. During surgery, they found Stage 4 Endo: my uterus was adhered to my rectum and I also had lesions on my uterosacral ligaments, round ligament, colon, bladder, and rectum. 

I had decided to do the surgery because when you think about it, endometriosis is lining in places where it shouldn’t be. So why would you let it sit there? There’s no reason that it should be there. And the fact that my organs were fused together—if my organs were fused together for other reasons, the doctor wouldn’t leave it that way or suggest treating with medications. Other endometriosis treatments and protocols would have hidden or suppressed it, but it wouldn’t solve the root cause. Surgery was the closest I could get at solving the root cause and that was important to me. 

The more I researched endometriosis the more I believed it had immunological implications. I started seeing a new doctor for immune protocols while working with my REI to do the transfer on the 5-day frozen blast. And it worked!

And here we are today—I just celebrated my daughter's 1st birthday, have three 3-day frozen embryos left, and a lot more confidence than I did at the beginning of my IVF journey.

Lessons I’ve Learned from my IVF and Endometriosis Journey

Be your own medical record keeper

You have to be proactive when you have a complicated history for an undiagnosed issue. There is no cohesive summary as to what is going on with you as a patient. You can request your medical records and go get second, third opinions. But I felt like the information was so difficult to sift through. I had to get really good at taking my own notes and looking at casualties. As I was meeting with so many doctors, I made my own cover letter that summarized my history. This was helpful not just for me to feel like I had some kind of control over the process, but so that doctors and I could have a more productive discussion in the allotted time we had.

The diagnosis changed my understanding of my body

If I did know I had endo sooner, I probably would have gotten surgery sooner. We would have been making more informed decisions versus shooting in the dark and spinning our wheels until something worked. Maybe I wouldn’t have needed IVF in the first place. Or maybe I wouldn’t have needed to do so many cycles; maybe I wouldn’t have had an issue with egg maturity.  All those additional cycles were a huge emotional and financial toll on me. It's so frustrating to not know why you’re failing so many times or why you’re having to go through IVF in the first place. IVF is supposed to be the magic bullet. It’s just supposed to work. The diagnosis gave me the peace of mind to know what was going on in my body. Even though I have had my baby it's not like my reproductive health stops. Having a baby is the end goal of IVF, but from a holistic health perspective, now I know I’m always going to be an endo patient. Even though I had the surgery, it could always come back, or there could be something they didn’t capture. It’s something to be mindful of the systematic implications going forward. 

Pregnancy can be a strong motivator in the diagnosis process

To be 100% honest, if I wasn’t seeking IVF and trying to have a child, I wouldn’t have pursued a diagnosis as diligently as I did. I was going to have a child hell or high water. When you’re trying to have a child and paying huge sums of money to do it, the doctors have more reason to listen to you and you have a little more range to take control of your care. I have so much sympathy for the women who struggle with the debilitating pain of endo and nobody believes them. In my experience, the doctors I worked with were just as motivated by my need to start a family as I was. For the most part, they took my endometriosis diagnosis seriously and were equally motivated to help me have a positive pregnancy and childbirth. But what if there isn’t a black and white outcome like pregnancy to measure? Many women have a terrible quality of life due to endo symptoms for years, decades, before their pain is believed or addressed. Since there is so little science behind what causes endo and how to treat it, these women are left to suffer basically until they are ready to have a child. If they want to have a child at all. Women’s reproductive health is important and deserves full attention and answers regardless of a woman’s readiness or desire to bear a child. 

Having an answer is important

There is such an emotional burden and anxiety from not knowing the answer to your pain or your infertility. The current system puts all the burden on the patient to figure it out. Plus the longer endometriosis is ignored, the worse it can be for that person. If you know you have endometriosis sooner, while you’re younger even, it would prompt you to take your reproductive health more seriously and not wait until 35 to figure out what’s going on. I would have been more proactive in my early 30s about my fertility if I had known at 25 that I was going to have issues. 

There are many symptoms of endometriosis besides painful periods

I never had the typical endometriosis pain you hear so much about although I did have heavy periods and clots when I was younger. I also had some pretty bad low back pain, but I had no idea that this could be attributable to endometriosis. But I never really had cramps and those symptoms that typically define endometriosis. For this reason, endometriosis wasn't even on my radar until the “unexplained infertility” diagnosis. Whether your symptoms are debilitating or not, it’s important to keep track of them. Anytime you find yourself asking, “how come nobody else is experiencing this?” it’s probably a sign something is off. And maybe it’s not even enough to pursue at the moment, but too many women find themselves 4 years and 5 IVF cycles in before the dots start connecting. 

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Image Credit:   ckturistando

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