I got the inspiration for this blog post when my friend Ashlyn sent me a Tik Tok and said “Wait, don’t you have this?” This video was a girl who describes how she found out she had prolactinoma. Prolactinoma is a condition where the body produces excess prolactin, which turns into a tumor on the pituitary gland. Prolactin is a hormone that is released in pregnant women to tell their body to release milk. This is something I have been struggling with by myself for about four years. I had never met anyone with prolactinoma. I have shared my story with many friends, but no one could relate or understand the uncertainties that come with prolactinoma. I had searched on YouTube and Google trying to find just one woman that I could relate to. I never found her until this video was sent to me. It’s a small gesture. It’s just a video. Except this video made me feel normal. This video reminded me that there are people out there that have similar problems. There were women in the comments expressing how they thought they were the only ones. There were women expressing their struggles with prolactinoma. Women supporting and uplifting other women.
I found out I had prolactinoma when I was about 17 years old. My family started to become concerned when I never had a menstrual cycle. I went to an OBGYN and got an ultrasound to make sure I had all the correct female parts, and I did. Thank goodness! After that they decided to draw my blood to test a variety of things. It was my first time getting my blood drawn and I didn’t know what to expect. It was in this tiny room that was filled to the roof with boxes and weird medical equipment. It was obvious this room was a second thought and was originally a storage closet. It was so small that only the nurse and I could fit in the room to draw my blood. My aunt had to stand outside of the room, because there was seriously nowhere for her to be in the “room”. I was 1 out of 9 viles deep into getting my blood drawn when I started seeing black dots and my hearing began to fade. I had passed out before. I knew what was happening, so I told the nurse and my aunt, who happens to be a nurse, that I was going to pass out. All I can really remember is that they started putting ice packs all over my body and I was terrified. Eventually, they drew all the blood they needed in order to run their tests and I regained consciousness. I was then referred to an endocrinologist who received my blood work and the results.
One of the coolest pieces of the blood work was that they analyzed my chromosomes to make sure I was truly a female based on my chromosomes. Thankfully, I was truly a female according to my chromosomes! That was a good sign. Nothing like finding out you’re not actually a woman after living 17 years thinking you were. The chromosome analysis was interesting because I got to see each of my chromosomes. However, the blood work did show abnormally high levels of certain hormones in my blood. One of those hormones causing the biggest problem for me was prolactin. The endocrinologist theorized I might have a pituitary tumor, so she requested that I get an MRI.
I got my MRI and it proved exactly what she had suspected. It was benign (noncancerous), but for some reason I cried. I felt damaged or broken. I was scared what this meant for me. I was scared about the long term effects of having a pituitary tumor. Would this increase my likelihood of having cancer? No one could explain how I got a pituitary tumor. From my knowledge, there isn’t a known reason or method of acquisition. It raised a lot of questions for me that I still don’t have answers for to this day.
My endocrinologist prescribed me a medication called Cabergoline, which is a noninvasive way to shrink the tumor. There was a catch though. Taking Cabergoline for long periods of time increases the likelihood of heart problems. So two things: I had to get an echocardiogram to make sure I didn’t have any pre-existing heart issues that I was unaware of, and I couldn’t take this medication my whole life. I was on Cabergoline for about a year or two (I honestly can’t remember). I don’t remember having any side effects (I may have been a little moody, ask my boyfriend!). The pill was extremely small, it was about the size of 2 grains of rice. I was taking half a pill two times a week. Once I finished taking it, I got another MRI that showed the tumor had shrunk to almost nothing. This was good news for me! I stopped taking Cabergoline and my endocrinologist insisted that I give my body some time to see if my hormones would regulate themselves and have a normal menstrual cycle. Well, that never happened for me. Actually, it happened one time, but it was random and never happened again. I was frustrated. Why couldn’t my body function normally like everyone else?
This is when my endocrinologist suggested I get on birth control to kickstart my hormones. I had already been prescribed birth control once in the past to see if I was capable of having a menstrual cycle. The theory was that if my hormones were regulated by birth control, then I would have a menstrual cycle. I did end up having a menstrual cycle. I personally hated taking birth control. I had heard so many horror stories about people gaining weight and having major mood swings, so I wasn’t fond of the idea. However, she was my doctor, so I vowed to her that I would try it again. I took birth control for a month to see if it would kickstart my body to produce all the right hormones and function correctly. Once again, it was a failure. The next month, no menstrual cycle. I went back to my endocrinologist and I told her that it didn’t kickstart a normal menstrual cycle. She insisted that I stay on birth control to avoid endometriosis, which is a condition where the tissues inside of the uterus start to grow outside of the uterus and cause problems. I didn’t want to do it and I told her why. I was scared of the negative side effects and truly, I struggled a lot during the menstrual cycles I had while on birth control. They were typically 2-3 weeks long, with extremely painful cramps, and they inconvenienced me a lot in college. Some days were so bad that I couldn’t even sit in an hour long class. Since this appointment I tried taking birth control once more and had the same results.
I guess that you can say I have taken a holistic and minimalistic approach to the situation. Insurance wasn’t covering the MRI or the echocardiograms. I still don’t understand why insurance companies feel that they know what’s necessary and what’s not necessary. If a doctor has prescribed me to have an MRI and echocardiogram, then why shouldn’t it be covered? These costs were accumulating quickly. I didn’t even consider the financials to be a problem, but it was more the principle. I felt bad that my family was having to cover these costs on top of other bills that come with children. I felt that insurance had failed me and my family. I was getting my blood drawn twice a year to monitor my hormone levels. I was supposed to be getting MRIs twice a year to monitor my tumor. The appointments were adding up. I was overwhelmed. I stopped everything at once. I started to believe that I was born this way for a reason. I didn’t feel human going to the doctor all the time and constantly having tests ran on me. I figured that what was meant to happen would eventually happen. I wasn’t getting results.
Considering I was already worried about my fertility, I decided to not take birth control. My doctor has never blatantly told me that I wouldn't be able to have kids, but it was inferred that I would struggle. The way my hormones are currently, I’m basically always pregnant. I’m not actually pregnant, but I have hormones of a pregnant woman. This can make it difficult to have children. Simply put, I don’t have the correct hormone levels to get pregnant easily. I want to note that I am not anti-birth control. In fact, birth control allows me to have a menstrual cycle. In the future, I might learn that it’s truly necessary to take birth control for my hormone levels to be normal.
Family is such an important thing to me. The thought of being infertile or unable to have children haunts me. Although I am only 21 and don’t want kids anytime soon, these thoughts appear in my everyday life. The burden I would place on my spouse lingers above me everyday. I’ve always considered adoption, because there are so many amazing kids who need homes. In a way I consider myself to be adopted and I know how much that changed my life for the better. I would be more than happy to provide that light to a child in need.
I want you to remember that you are not alone. I want to make a disclaimer that the purpose of this was not to make my problems seem bigger than anyones elses. I wanted my voice to be heard. I want to be a voice for others as well. I understand that there are many different issues that people can be facing. Mine is definitely not the worst. I hope that this post reaches someone who is struggling with something similar or maybe something completely different, but they feel more comfortable knowing they're not alone. Going through this and knowing it will impact my future, I have learned not to dwell on things that aren’t in my control. Sure, I could go to the doctor again, but I tried that and it didn’t work for me. I felt like a science experiment. I understand that one day I may seek medical help in order to have kids. At the moment, I am not ready to continue with treatment, and that’s okay. Taking birth control will not reverse my potential infertility. I am losing nothing by doing what is okay with my personal beliefs. Though this mentality may not fit everyone's situation, I’ve chosen to embrace the unknown because I can’t control the unknown.
Resources:
Infertility: https://resolve.org
Prolactinoma Information: https://www.niddk.nih.gov/health-information/endocrine-diseases/prolactinoma
Suicide Hotline: 1-800-273-8255
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