Green means go...especially when you have low AMH (Jenny's story)

"If I had known beforehand that this was coming, I would have been able to better prepare myself for it emotionally."

Jenny, The Two Week Wait

After experiencing two chemical pregnancies in our first year of trying to get pregnant, I had a feeling that something wasn’t quite right. Even though my periods were regular, they had been very light for a few years. Combined with the losses, it was enough for me to decide to investigate further.

I asked my OB for a referral to a reproductive endocrinologist, AKA a fertility doctor.

We agreed to move forward with a basic fertility workup, which includes fertility hormone testing, a semen analysis, and a uterine cavity evaluation — or a physical assessment of the uterus to test for any mechanical barriers to fertility. Think fallopian tube blockage, polyps, scar tissue, and structural abnormalities.

Together with fertility hormone blood tests (more on that later), one of our first steps was a hysterosalpingogram, or HSG, an X-ray dye test that allows a clear view of the uterus.

The test is quick, but more intense than I was anticipating. The provider inserts dye into your uterine cavity, which shows an outline of your uterus and fallopian tubes that stands out clearly on an X-ray. And it hurt. In some cases, including mine, the cervix needs to be dilated with a catheter to allow for the insertion of the dye. Deep breaths and pain meds are your best friends here!

However, it was illuminating — literally and figuratively. I immediately saw on the screen the solid outline of scar tissue around my cervix, along the walls of my uterus, and partially blocking my right fallopian tube. My doctor told me that I likely had Asherman Syndrome.

Asherman's Syndrome is characterized by the presence of scar tissue (you might hear it referred to as adhesions) in the uterus. These adhesions can be a physical cause of infertility: they can prevent uterine lining from growing, block the fallopian tubes or cervix, and stop an embryo from implanting or growing. It is considered rare, and the causes of the development of the tissue aren’t really known. It can lead to menstrual issues, pain, and infertility.

Asherman Syndrome is usually preempted by something that caused physical trauma to the uterus, such as D&C following a miscarriage, a surgery, or childbirth. But none of these applied to me.

My doctor believed it could have been caused by the insertion of my IUD. I say this not to freak out anyone with an IUD — even after this experience, I am still generally a proponent — but in case it validates anyone with a similar experience. You won’t find IUD insertion listed as a cause on any websites about Asherman; it’s incredibly rare, but it can happen.

As a next step, my doctor recommended a hysteroscopy, a minimally-invasive surgery that involves inserting a hysteroscope (tube with a light and a camera) through the cervix to examine and diagnose uterine issues, and in many cases like mine, using other tools to physically remove abnormalities like polyps, fibroids, and, of course, scar tissue.

I felt frustrated but hopeful. On one hand, I struggled to believe that we were facing such a difficult (literal) barrier to getting pregnant. On the other, the optimistic side of me believed that this would be our fix: after the hysteroscopy, our issues would be solved and I would get pregnant easily.

The procedure was frankly a piece of cake compared with the HSG. I was placed under deep IV sedation for less than an hour, not unlike an IVF egg retrieval, I would come to understand later. When I woke up, my doctor confirmed they removed the adhesions and that the procedure was successful.

Recovery was quick, with one day on the couch and some mild cramping.

The most unpleasant surprise of the experience was the post-procedure protocol. I was told after the hysteroscopy — not before — that I was to begin a month-long daily dose of oral estrogen. The goal was clear and understandable: estrogen supports the growth of the uterine lining and aims to prevent the recurrence of any scarring.

It wasn’t the protocol itself that I was so taken aback by, but the side effects of the estrogen. For the month I was taking it, I had severe mood swings, cried at the drop of a hat, and was emotionally knocked sideways by things at which I wouldn’t normally bat an eye. My experience, I came to learn later, is quite a common one.

If I had known beforehand that this was coming, I would have been able to better prepare myself for it emotionally.

On to the fertility hormone blood tests -- likely what you think of when “testing your fertility” comes to mind. My doctors conducted these hormone tests at two different points in my journey. The first time, the lab report I received showed nothing outside the “normal” range for my age. I saw a lot of green on the charts and took that as a good sign (green means go, right?).

Importantly, I would come to find later, my doctor didn’t sit down with me to review them.

The second time was when I established care with a new doctor after we moved to Los Angeles the following year. Given my first results, I approached the testing as a simple formality, assuming we would go through the motions then go on our merry way.

I will always remember it: Matt and I got the results through my clinic’s portal one evening when we arrived home from a dinner. The message showed our results: “AMH = 0.7. FSH = 20.1. Consistent with diagnosis of low ovarian reserve.” That’s it.

We hadn’t heard that term before, so naturally we began to Google. At first glance, the results appeared devastating. We panic-scrolled past phrases like “older biological age”, “poor response to treatment”, “premature ovarian failure”, even “early menopause”. Various resources showed that expected numbers for my age were around 1.5-2.5 AMH and <10 FSH.

We sobbed. We questioned our future.

But we quickly found that the information online about ovarian reserve is confusing: one article is strewn with shocking phrases like the ones we saw, and the next the reader is assured that AMH is not a measure of one’s natural, immediate fertility. We were terrified but also stumped.

When we were finally able to talk with my doctor about the results, she was surprised that we were so surprised by the results. Her assessment of my previous results from my other doctor (lots of green!) was that I was on the very low end of normal ovarian reserve levels: I was on the precipice of a low ovarian reserve diagnosis even then. No one had told me.

She explained that my low ovarian reserve might not impact our fertility in the next couple of years (again, that AMH alone isn’t a measure of your natural fertility), but it would make the feasibility of childbearing beyond that uncertain. In other words, I had fewer eggs remaining, and my timeline was likely shorter than others my age.

She shared that if Matt and I had a goal of having multiple children — which we do — that she strongly recommended IVF to bank embryos. I recall her saying we “didn’t have a lot of time”. However, she also said that my low reserve might make treatment more difficult. The fewer eggs you have, the fewer you tend to retrieve in IVF. It could be a difficult journey, but it could also provide us with more time.

We decided on the spot to move forward with IVF.

We were stunned at first — we never expected we would end up here. At the same time, we were eager to get started and optimistic about our chances.

My doctor walked me through what would happen next: we discussed the necessary medications, the cadence of appointments, the potential timeline of my retrieval. I have a hazy memory of her mentioning that there is, on average, a 5% chance of an IVF cycle yielding no fertilized eggs. But what we didn’t discuss, and I didn’t think to ask, was what my expected outcome was given my diagnoses.

In fact, I remember sheepishly confiding that we were really hoping to only have to undergo one cycle — we don’t have IVF insurance coverage and the budget was going to be a stretch. She said, “OK”.

My antral follicle count (AFC) at the start of the cycle was 8 — low for my age at the time, but not devastatingly so. But as the cycle went on, my ultrasounds showed disappointing results. Only 3 follicles were growing as expected; the others trailed far behind. My retrieval date was incrementally, painstakingly pushed out a day at a time in hopes of coaxing more follicles to grow (which is to say, daily appointments and a nightmare of a work schedule).

In the end, we retrieved 4 eggs.

I felt a confusing mix of disappointment and hope. I was crushed we didn’t retrieve more and knew this likely meant a longer road ahead. But I was glad we had something.

Then came (what I now know as) the gauntlet of the fertilization process. Initially, 3 of the 4 eggs showed signs of fertilization. A couple of days later, we got word that all 3 had stopped growing.

None of them developed into blastocysts.

We had pushed through the retrieval cycle, shelled out more money than we ever expected to spend, and had zero embryos to show for it. I hung up the call with the clinic and sobbed on the bathroom floor, the weight of it absolutely flattening me. We questioned our future, questioned if we truly would be able to have biological children. But we kept going.

Our journey is far from over. A new clinic, three more (thankfully successful!) egg retrievals, two canceled embryo transfer cycles, and a second hysteroscopy (yep, the scarring came back) later, we’re not out of the woods. But we’re hopeful -- we don’t know when, or how, we will hold our baby in our arms, but I know we will.

Learn more about Jenny’s story on her Substack, The Two Week Wait.

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