Chapter 4. The Thought of a Tumor

The second half of 2021 was a lot of self-learning and discovery about my health, and it came with a lot of wins, but also a lot of lows, and a little bit of scary.

I have to mention that when we first started trying and I got preliminary testing done, the only thing that was abnormal was my prolactin level. Typically, only pregnant or breast feeding females have elevated prolactin levels because of the need to produce milk. It is common though, when a female is anovulatory (lack of ovulation) and if it is elevated, that is the culprit for your irregular cycles.

So right off the bat my Dr. prescribed a medication called cabergoline to lower my prolactin. And it worked, it decreased within 2 months of starting. It is a very common treatment with little to no side effects, and I wasn't concerned with taking a medication.

It was briefly mentioned to me during this time that a lot of women that have elevated prolactin levels while not pregnant have a pituitary tumor. Woah pause, what? The word tumor was being thrown around too casually. A benign tumor though, the Dr. explained. Not something that needs operation unless it's of a certain size, and usually it decreases in size with the medication I was on anyways.

But it was highly unlikely with my lack of symptoms she assured me. So I tried not to harp on this, because my prolactin level was indeed going down.

Now back to 2021, after our Letrozole experience. At this point in our story I dug into my health and was looking for natural solutions. So just like with my PCOS, I dove into reading and support groups to find other people in similar situations. I had now been on cabergoline for about a year and a half, and it kept my level perfectly low.

After a regular annual check-up with my Dr., she suggested that we try and go off of the medication to see if my body would sustain that low level. I honestly didn't really want to. Normally any chance I get to come off of a medication, I'd take it. This one however was such a small way to control my prolactin, so I didn't mind doing it.

Despite that, I was hopeful and agreed to stopping the medication. After about a month off of it, I got my blood drawn, and sure enough my prolactin bounced back up to being slightly elevated. And when I say slightly elevated, it was 3 or 4 points above the maximum range. But still, they consider that abnormal.

To me, this just meant that I was going to be on cabergoline for a long time, and that was totally fine! Again, a tiny pill twice a week was nothing. This sparked concern in my Dr. though, and the conversation of the pituitary tumor came up again. This time, it was a little more serious in her suggesting that I get an MRI.

She comforted and reassured me again, that this is a very common thing women with high prolactin face. And even if you do have a tumor, again it's benign and often doesn't do anything besides mess with your hormones.

I had joined a support group on facebook of women with high prolactin, and decided to write about my concerns with potentially having a pituitary tumor. It turned out that a lot of those women had much higher levels than I did, and a lot of them actually did have tumors. But the way they casually talked about it with no concern was reassuring.

The end of the year was quickly approaching, and thinking logically, If I actually needed to get an MRI of my head, I wanted to get it done as soon as possible. In fact, I asked for any appointment possible before January 1st so I could fit it into that calendar year for health insurance reasons. My nurse took my concerns seriously and made sure I got an appointment before year end. Honestly my Nurse Megan deserves a post of her own because she's been through all of this with me.

My appointment was set for 2 days after Christmas, and I was SO anxious. I only told a few people including my parents because I didn't want to worry too many people if it was nothing. Not only was this time of year really hard lacking a pregnancy or baby, but having to worry about a potential tumor in my head was freaking me out.

I remember Christmas day, and I just felt absent because all I could think about was the MRI and what would happen as a result of it. Up until this point, I wasn't really afraid of getting the actual MRI, more so to just carry on afterwards if there was a tumor.

That day came and we got to the hospital outpatient center where they gave me an IV. I got woozy, as I always do with IV's, and my husband sat there and chuckled at me. Sometimes I think he does it to make light of the situation, but also I was dramatic about things and just really don't like getting an IV. It came time to walk down to the MRI, and I was not about to get up and pass out like I've done in the past. I have a few funny fainting stories if you don't know me.

Dillon helped me walk down like a true EMT Firefighter helping an elderly lady walk. This is a good time to mention I learned to lean on my partner a lot in these years of infertility, literally and figuratively.

Once we got down there, it only took about 30 minutes in the machine total. It was incredibly loud and the noises were obnoxious, but at least they gave me a warmed blanket. I took this time to just breath, because if I thought at all about why I was there, I started to tear up. Moments like these are hard because our whole infertility story just replayed in my head of how we got to this point.

After it was over, I was so relieved. Even if I did have a tumor, at least that was over and now we could deal with it. We left the hospital, and I'm not kidding within 15 minutes I got my test results through the app. And if anyone else has had any testing done before, you'll know how cryptic the results can be to a common person. Word for word, it said "Impression: the MRI of the sella (head) is negative". Okay, so I don't have a tumor right?

We debated this the car ride home, and ultimately decided with our expert medical opinions that I was all clear. There was a little tiny piece of me that thought maybe I'm misinterpreting that, but all of the other results said things like 'normal' and 'satisfactory'. I don't think I've ever been so relieved in my life. Sure enough my nurse messaged me the next day confirming there was no tumor.

Even though that was the result I wanted, sometimes you secretly hope for the opposite so there is a reason for your struggles. Not that I wanted a tumor, but it would have justified part of our infertility. Just like when I got the PCOS diagnosis, it gave us a sense of relief because there was an actual medical reason we were not getting pregnant. This however, still left us with a lot of unknown.

If you're reading this and you actually do have a pituitary tumor, I don't mean for this to be negative towards it. Most women that do end up having one just have to get it monitored once a year and make sure there isn't any growth. So either way I would have been just fine, but this was just one more obstacle that came our way.

In the 2.5 years that we have been TTC now, I've learned a lot. But the biggest takeaway so far that is reoccurring; I chose the right person to spend forever with. He has truly shown me what "in sickness and in health" means. That will continue to resonate with the rest of our story.

I know some of my posts are a lot to take in, but I promise that I'm telling them as I experienced. If you've never experienced infertility, I hope for you to learn about all that some couples have to go through. And if you have walked this road before, I'm thankful you're here. If there is one female out there that gets reassurance from anything that I write, I'll be so happy.

Please feel free to share any of the posts, and recommend this as a comfort to someone going through the highs and lows of Infertility.

Thank you for being here.

- CC