I Have What, Now?

Read part one of this story in For This Child We Pray.

The most challenging part of dealing with infertility is the tendency to blame yourself for something you have no control over. Features from my own journals include:

“Is it something I’m doing wrong? Am I doing something that’s making me not ovulate? Or has this been a problem all along and I just never knew about it?”

“Because we wouldn’t be in this position if it weren’t my fault. If my stupid body would work the way it’s supposed to, we’d have a baby by now. So it’s my fault. I’m the failure. And not being able to do something I’m genetically designed to do makes me feel like less than a woman.”

We had two months of waiting before being able to get in to see a reproductive endocrinology and infertility (REI) specialist. (Nothing ever happens quickly in specialist-land.) We had no idea what to expect other than the fact that this woman was supposedly one of the best in the area. If she couldn’t get us pregnant, no one could.

David and I passed the time by doing a Biblical devotional together about infertility. We had yet to find a church near where we lived that we wanted to go to, although to be honest, we hadn’t been looking too hard. Our lives had gotten in the way and God had been put on the back burner. But with everything going on, we sought comfort in the Lord to help us carry our burdens. If there’s one good thing that has come out of this, it’s the growth both David and I have had in our relationship with the Lord, and we wouldn’t trade that for anything.

Finally, the day of our appointment with the REI specialist arrived in the middle of February 2016. We were immediately put at ease as soon as we walked into her office. She was kind and compassionate, understanding and thorough. After going through my history and past lab results, as well as David’s health history, she came to the conclusion that my current issues could be due to atypical PCOS versus hypothalamic amenorrhea versus a prolactinoma (a benign brain tumor of the pituitary gland, which could explain the headaches that were bad enough to keep me out of work for weeks at this point. More on that in another post!) She wanted more labs drawn on day 3 of my next menstrual cycle to narrow down the culprit.

Late that night, I digested the information we had received. PCOS wouldn’t be so bad. I could take metformin to treat it and should be able to get pregnant fairly easily. Hypothalamic amenorrhea wouldn’t have been surprising, given my past history as a dancer, but treatment would require injectable FSH and LH since there’s no other way to get the lacking hormones into the body. That could get expensive pretty quickly. A prolactinoma seemed scary, but could be treated with oral medication. Going based on symptom lists, I noticed I actually had the most symptoms of a prolactinoma. But that was lowest on our differential because the other two are much more common, according to the specialist. As luck would have it, I got my period that night, so I was able to get the day 3 labs drawn quickly without having to wait weeks and weeks for my period, since my periods are usually so darn unpredictable. So I had the labs drawn and waited.

A week later, I woke up with a head-splitting migraine that sent me to the emergency room. Although I had been having migraines almost every other day for nearly 2 months at this point, this one was particularly bad. Wanting to rule out any intracranial process, I had a head CT performed that came back normal. That was a relief to know that there was nothing in my brain causing my headaches and it also ruled out a brain tumor on our differential with our REI specialist.

However, our certainty about that was short lived. Very early in the morning on March 1, 2016 (I was working night shift at the hospital), I received a message from my REI specialist. She said, “Your FSH, LH, and E2 were all low, which indicates suppression coming from the brain (hypothalamic cause).” AHA! It was that hypothalamic amenorrhea thing! But wait…she continued, “When these levels are low, you may get very irregular cycles or no cycle at all. This is very different from PCOS and likely reflects a small growth in your pituitary gland (your prolactin was elevated)…The next step will be a head MRI…”

Waiting the week until my MRI was to be done felt like the longest wait of my life. But my attitude towards my circumstances was slowly changing.

“Next winter. A point at which I will still be childless, if pregnant at all. Which is sad to think about considering everything I’ve  been through lately. A few months ago we were so sure that it would be this year. But you know what? I think I actually have peace about it now. I don’t know whether it’s because I’ve just given up that it’s going to happen this year so I don’t feel the pressure anymore…We’re not going to have a child in 2016, so why think about it anymore?”

A week later, the MRI of my pituitary gland revealed a 6 mm (pea-sized) microadenoma, specifically a prolactinoma, meaning it was secreting prolactin. (Microadenomas can secrete other hormones produced by the pituitary gland as well). I learned that prolactin actually inhibits the release of FSH and LH from the brain, which clearly explains why the Clomid did not work. The prolactin was “strong enough” to prevent the Clomid from forcing my brain to release FSH and LH. That’s why I never ovulated.

There are two possible medications used to treat prolactinomas: bromocriptine, which is a much older drug, or cabergoline, a newer drug with fewer side effects that is generally better tolerated. *Pharmacy nerd moment commencing* These medications work by binding to dopamine receptors in the brain and inhibiting the release of prolactin from the anterior pituitary gland. Once my prolactin level drops enough, my pituitary gland should be able to release FSH and LH, which will induce ovulation, and I should be able to become pregnant with no issue. *Pharmacy nerd moment complete*

I was started on cabergoline in the middle of March 2016. However, it only took about a month to realize I wasn’t going to be able to tolerate the medication. The side effects were unpleasant: nausea, dizziness, lightheadedness, and (worse) headaches. So even though bromocriptine is typically the less tolerated medication, I switched to that. Surprisingly, I did well with it until my dose was increased because my follow-up prolactin level was still slightly elevated. A few weeks after the dose increase, I began to have side effects so severe that one time I passed out in the shower while getting ready for work. I could barely stand because of the dizziness and lightheadedness. Due to these persistent side effects, I stopped the medication altogether at the recommendation of my endocrinologist.

So where are we now? Off the medication, it is likely my prolactin level will rise again to the point of inhibiting FSH and LH from being released from my brain. This means, of course, no ovulation, which would make it impossible to conceive by natural means.

There is another option to lower the prolactin level: brain surgery to remove the tumor. In the right hands, the procedure has about a 70% success rate (meaning only a 30% chance of the tumor growing back). At this point in time, David and I have made the decision to proceed with the surgery in September. If successful, it will reduce my prolactin level to normal and I should be able to conceive naturally.

I still have hope inside me that someday, if it is the Lord’s will, He will bless us with a child, or perhaps a few. The featured photo at the beginning of this post is a photo of the contents of our baby’s hope chest, things I’ve collected that I believe our baby will someday use. (Can you tell we are fans of Doctor Who?) So to end with a quote from our favorite time traveler, the Doctor…image

💛 ribbonrx

3 thoughts on “I Have What, Now?”

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