The girl with a headache. The girl who‘s always tired. The girl who never feels good. The girl with no energy. The girl who feels down. The girl who works hard just to put on a happy face. The girl with a million symptoms.
This was me for seven years straight. This may be you right now. If it is - I‘ll be sending out an extra prayer tonight for ya. You are not alone.
I am not simply telling this story to record and release my own history - I am telling it in hopes to encourage, to relate, and to validate anyone that feels plagued by endless symptoms and vague answers. Keep fighting. Keep searching. No one knows your body like you do.
It took many, many doctors and many, many symptoms to find the root cause for what I was feeling. Without my faith & family the ending could have looked much different. Dark days get real dark & hard days get real hard. But, don’t let that be the place you get stuck. Don’t let that be your normal. You deserve a fighting chance. Good days will come. They may not be in the way you thought, but keep pushing forward & find hope in all things, especially the little things.
I’ve been living 11 years now with what you may call a “chronic illness” & it took 7 years to give it a name: Prolactinoma. Within these 7 years I was technically diagnosed with multiple things. However, none of them seemed like the right answer and none of them answered all of my questIons for all of my symptoms. It wasn’t until my Prolactinoma Diagnosis was confirmed that my previous ”illnesses” all made sense.
Let’s see, where do I even begin? Let's start with the list of everything I was diagnosed with the past 11 years.
Growing pains & stress
Over active periods
Severe seasonal allergies
Poor Kidney drainage (infections)
Side effects from Celiac Disease
Begnin Mitral Valve Prolapse
Thyroid T3 (specifically) deficiency
Progesterone & DHA deficiency
Chronic Fatigue Syndrome
Anxiety & Depression
And finally - A Prolactinoma, Pituitary Tumor
Some of these things I actually DO have in addition to my Prolactinoma & others I have because of the Prolactinoma. Let me explain what’s true for me for where I’m at now.
Let me pause here to say - I’m about to go all in & keep it real & raw. I’m making myself real vulnerable here. Why? Just in case someone else‘s story looks like mine & my story can help them get their diagnosis sooner, then it will be all worth it. That being said, my symptoms include a whole lotta lady business. Consider yourself warned.
It all started with my cycle. It would last for 15+ days & it would be so draining and heavy that I wouldn’t be able to function. This lead to being placed on the pill at a young age because it was the only thing that regulated me enough so I could operate on a human level. There is a theory that a Prolactinoma can develop when a woman has been on the pill for an extended period of time from a young age - but there is a conflicting theory that the heavy cycles are already a sign that a tumor is developing... so what came first? The chicken? Or the egg?
I would still try to explain to the doctor how tired I was - but he would brush it off on growing pains, stress, & young adult adolescence. My mom could tell it was something more - mama knows best - so we kept seeking answers.
This lead to checking my thyroid hormone levels - which were low. I know now that this was because your thyroid is one of your adrenal glands & your pituitary is your master adrenal gland. So what presented itself as a thyroid problem really stemmed from a pituitary problem. So taking thyroid medication masked some of the symptoms - but not all.
I was still so so so so tired and any amount of sleep I would get wouldn’t help. That’s when the headaches came into play & were brushed off as severe seasonal allergies until they worsened and wouldn't go away. Then they were categorized as migraines and the extreme tiredness was said to be present because I was having migraines behind my eyes that I couldn't feel (ocular migraines) - but would wear me out afterward (seeing floaters a symptom of having an ocular migraine). Headaches, floaters, blurry vision, and extreme fatigue are also signs for a brain/pituitary tumor growing - but no one was expecting that yet... so I was diagnosed with the latter.
Here is where things got tricky - in the meantime, other issues came into play... You see, I actually do have Celiac Disease, a small kidney, severe TMJ (as a result of an accidental broken jaw from a wisdom teeth extraction), and a benign Mitral Valve Prolapse. So these things muddied the waters for my doctors. Many symptoms were linked into these issues - but not all.
It wasn‘t until I got these other issues under control that I realized what I was left with felt “different.” My headaches from my jaw pain didn’t feel like the headaches I was having now. These headaches hurt to think, to look, to be awake. The anxiety started to get worse and worse. I couldn't sleep but I was so so tired. My head literally felt like a pressure cooker that was about to blow.
So we pushed forward for more answers. They told me it was anxiety & panic attacks that were causing this feeling. Which - I could see why... yes, I was most likely having real anxiety and real panic attacks... but my headaches were inducing them - not the other way around...
I saw an integrated doctor who ran all sorts of hormone tests. My hormones were all out of wack and he declared me premenopausal. I started medication to remedy this... but to no avail... (because we weren't treating the root cause for my hormonal imbalance). So this lead to the only possible explanation any doctor could think of... Chronic Fatigue Syndrome, Fibromyalgia, anxiety, & depression.
My pain didn’t get better with anything that should help Fibromyalgia or Chronic Fatigue Syndrome. My depression and anxiety were only getting worse (I’ll expand on what that looked like another time).
I would cry because the pressure was so bad I couldn’t think - but what else was I to do? So I researched because nothing was helping. Many times Brad would want to take me to the ER so they could scan my head. He would ask “Do you think there’s something in there?” and I would say that they wouldn’t believe me, chalk it up to anxiety again, make sure I wasn’t dying that second, and send me home. So I would refuse. But I did start to wonder... is something in there?
Meanwhile, crazy enough - my Uncle went into the ER and had a tumor removed from his pituitary gland (his was a different type of tumor). But. this got me thinking... but also feeling like a hypochondriac.
When I looked it up... it read me like a book... but I thought - no way! It’s like when you watch Grey‘s Anatomy & then worry you might have this 1% rare case like that patient on the TV show... it’s crazy talk!
Ps: there actually was an episode with a patient having a Prolactinoma on Grey’s last season.
So I continued on. Symptoms (especially the head pressure, anxiety & depression) were growing stronger by the day. I was pushing through moment by moment and crying to myself, my mom, or my husband when I couldn’t fake it any longer. Then I got the symptom that changed everything.
I started to spontaneously lactate. Milk would leak out of my breasts at any given time. The first time it happened I took a pregnancy test - negative. Then, I called my doctor. She had me come in within the hour.
She ran scans to check for and ectopic pregnancy and breast cancer but they came back negative. This left one conclusion - brain tumor. So they sent me in for a CT & an MRI of the sella portion of my brain.
A few days later when the nurse called to say they found a tumor, I could tell she was surprised to hear how calm and relived I was. Finally, I thought - something actually was growing inside of my head. I’m not crazy after all.
More blood work and tests were done to determine what type it was & to ensure it was benign. After the relief subsided, the fear crept back in. A brain tumor is no small diagnosis. There was still so much to figure out on how to move forward. A whole new journey began at this point. I touch on this a little in my Journey to Ren. Soon I'll share my new normal, day to day living, and my continual pursuit of healing.
This road was not an easy one, but God has used it for good in so many ways. Through it all I had to lean on him to push through. There was simply no other way.
Even though I have received such wonderful revelations from God. So to keep me from becoming proud, I was given a thorn in my flesh, a messenger from Satan to torment me and keep me from becoming proud.
Three different times I begged the Lord to take it away. Each time he said, “My grace is all you need. My power works best in weakness.” So now I am glad to boast about my weaknesses, so that the power of Christ can work through me. That’s why I take pleasure in my weaknesses, and in the insults, hardships, persecutions, and troubles that I suffer for Christ. For when I am weak, then I am strong. 2 Corinthians 12:7-10
I have become stronger in faith. I have become more empathic. I have been shown love and grace in the valleys - especially from my husband, Brad, my mom, my dad - my family as a whole. I have been given the greatest gift of my sweet little Ren at the end of this 11 year road. And as I’ve said before - Brad and I would have taken any road to end up here - with our Ren.