Things You Might Not Know About Me

   

Things You Might not Know About Me

 

 

What is something you might not know about me? Let's begin. My life is challenging, but whose isn't? Especially when you have a health problem. I was diagnosed with a benign brain tumor.  Okay, I know.. Let's talk medical for a sec.

The type of tumor I have is known as a Prolactinoma. Prolactin-secreting tumors cause excessive prolactin (hormone) levels in the blood in both men and women. Yes! Men can actually develop a Prolactinoma, they can even produce breast milk. Woo! That's was a lot to take in.

With this being said, my days can get pretty crazy! My daily life mostly consists of checking my t-shirts for unwanted leaks.. if you know what I mean. How embarrassing.

Pituitary Tumors can affect everyone differently according to the type you have, and how elevated your prolactin levels are. It also depends on the person. So, to clarify this isn't speaking for everyone. This is my struggle. In women, a Prolactinoma can cause irregular or lack of menstrual cycles and milky discharge from the breast. I personally experience both. My last menstrual cycle was October 16, 2016. I know, It's been awhile! I often get told, "It must be nice to not worry about a period!" or "I wish I was that lucky". I definitely wouldn't call it lucky. I wouldn't wish this on anyone. My doctor once told me, "It's like your body thinks that your pregnant". That makes sense! No menstrual cycle, producing breast milk, unexplained weight gain, constant nausea and vomiting, increased urination, and headaches. All for nothing. It's just you. That's your life now. 

I am constantly nauseated, imagine planning a date with your husband with one catch -  where will the closest bathroom be? Will I make it in time? Do I need to pack extra clothes, you know.. just in case. 

I forgot to mention, Prolactinomas like to play with your vision. Especially when a migraine magically appears. Now.. imagine this happening while driving. Wait, it gets better. Now, it's gotten so bad that you have to find a spot to pull over and you are beginning to feel nauseated.. again! It's not like this is new. You've felt nauseas all day. 

I really can't make plans. It just depends on how I feel that day. Especially when I have to take the medication prescribed to me for this very reason. The next day just drags by. 

Depression is {One} of the biggest things I struggle with. It's the fact that people don't understand my battle. You can't expect them too, their not in your shoes. Depression comes with all types of Chronic illness. It effects your outlook on things, sleep, energy along with many other things. When your hormones are messed up, your life flips upside down. 

Prolactinomas also cause acne, bone weakening and anxiety. I struggle with acne and anxiety that I know of. I haven't had the bone density scan in my course of treatment as of now. My acne problems hit highs and lows. It depends on how stressed I've been. My face gets very tender, and it hurts to even touch. You try to cover it with makeup when going out, it looks bad and it just irritates your skin even more. This is where anxiety comes in. You constantly wonder if those around you notice how bad your acne is. You also worry about everything else... like the conversation you had with a friend six years ago. I know it's crazy, but it's true. Again, anyone can get depression and anxiety. You don't HAVE to have a chronic illness to experience these. 

Let's talk about the mood swings. Every woman, I know experiences this. I personally have extreme mood swings - so my husband says. Oops. This is just something that comes with messed up hormones. 

Of course, I experience infertility; which then leads into depression. It's not fair, and I constantly catch myself saying that. Due to the lack of a menstrual cycle I do not produce eggs, which leads into me being infertile. I just feel the need to be a mother. It's something I've dreamt about since I was a little girl. Prolactinomas also cause low libido. This can cause problems in your marriage/relationship. However,  I am blessed to have a husband who understands. 

What are the treatments for a prolactinoma? Treatments can include medications, surgery or radiation. I personally take a medication called Cabergoline. My doctor had decided that I would not benefit from the surgery because of the size of my tumor. I actually have two tumors. One on each side of my pituitary gland; one measures 4.5 mm and the other measures 5 mm. If they were bigger (Macroadenoma) it would require surgery; due to the fact they would be pressing on my optic nerves. This could cause visual disturbances or even worse, visual loss. However, like other medications; cabergoline has some pretty nasty side effects. I suffer from some of them like; dizziness, loss of strength and headaches. The scary thing is, cabergoline can actually cause leaky valves. Leaky valves can occur if one has taken this medication for a long period of time. I can cause serious complications if left untreated. 

I was seventeen when I began to experience complications. I ignored it for years. I didn't think that something like this could happen to me. May 2019 I began treatment after I was misdiagnosed. 

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What is it like in your life? Is it similar to mine? Share your story by commenting, let's raise awareness. Help people understand.

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