You never want to hear your doctor say, “your brain MRI came back abnormal.” The fear and panic that go through your body at this moment are overwhelming. My MRI revealed a pituitary adenoma. I know there are so many of you out there that have gone through this same situation and know just how I felt. For those that have never experienced this, I have written this article to spread awareness.
According to Cleveland Clinic “A pituitary adenoma is a growth or tumor on the pituitary. Most pituitary adenomas are slow-growing and benign.” Any adenoma bigger than 1 cm is called a macroadenoma. It is interesting that some adenomas can actually produce hormones, however, mine is not doing that. Mine was detected because the adenoma is pressing on my pituitary gland preventing it from producing the necessary hormones I need.
In researching adenomas, I found out they are more common than I thought. According to the Pacific Pituitary Disorders Center, 10-20% of the population has a pituitary adenoma and probably doesn’t even know it. I guess so many of these are so small they don’t cause symptoms. In addition, they are the third most common of all intracranial tumors. Luckily, 90% of these are benign and slow-growing, which is most likely what I have.
The Pacific Pituitary Disorders Center says that a pituitary adenoma can cause many complications.
- Hormonal failure
- Vision loss
- Apoplexy (bleeding into tumor)
- Loss of libido
- Dizziness and Nausea
My journey to an adenoma diagnosis started with a visit to an endocrinologist. This doctor did the most blood work anyone has ever done on me. He tested my hormone levels and that is where he discovered that my estrogen and progesterone were very low. At first, this was a comfort to me because it explained so many of my symptoms and why I wasn’t getting any better. I was highly emotional, severely fatigued, had extreme brain fog and several other symptoms.
It can be tricky because many of these symptoms are also symptoms of fibromyalgia. This is why it is so important for doctors to not put all of our symptoms in one diagnosis box. Too often, they are chalking it all up to fibromyalgia. Although, these symptoms will still be present with the fibromyalgia they wouldn’t be to the extent I was experiencing them and for the amount of time. This makes me so mad, I can’t even explain how mad. We really need to overhaul the United States healthcare system and doctors need continuous education! I suffered for much longer than I needed to be suffering. Worse yet, my concern was disregarded by my doctors and I was made to feel like I was exaggerating my illness.
With the abnormal hormone levels, the doctor suggested we do an MRI. He told me that the best-case scenario is that I have a tumor pressing on my pituitary gland and if so it can easily be removed. Of course, this sent me into a mild panic. However, he reassures me that it is a simple procedure where they go up through the nostril, removes the tumor and that takes care of that.
Going into the MRI and waiting for the results, I really didn’t know what I wanted the outcome to be. I know that I was kind of scared, but also really relieved that there was something tangibly wrong with me. Anyone that has an invisible illness can understand this feeling. Seeing doctor after doctor look at you and treat you like you are faking it, can take its toll on a person. I’ve actually had a primary care doctor turn me away because my case is too complicated!
To address my hormone levels the doctor gave me estradiol and progesterone that I have to take in a complicated way. Well, it sounded complicated to me. I start the estradiol on day 1 of my cycle (the first day of my period), then I start the progesterone on day 15. I take both until the 25th day of my cycle, then start all over again on day 1 of my period.
At first, I was super intimidated by my new pill schedule since I have such a hard time remembering to take my pills. By the way, I’m on my second month now and I’m actually doing pretty well at remembering (pat me on the back). So the purpose of these pills is to replace the hormones that my pituitary gland is not producing. However, like all pills, they have side effects.
I have been experiencing migraine headaches on a regular basis and extreme menstrual cramping. I don’t know if there was a worse word than extreme- I would use it. That being said, my symptoms are improving. My extreme mood swings are getting better and I think I’m a little more pleasant to be around. The other symptoms are hard to tell because they blend in with my fibromyalgia symptoms. For instance, I am still fatigued and forget the words for everyday items I should know the word for.
It was a long week waiting for my MRI results with all kinds of scenarios running through my mind. What it’s like only a person with anxiety can come up with. So, it figures that I would get a severe cold with a fever and not be able to go to my doctor’s appointment for the results. I had to wait longer. I called the doctor the next Monday and we talked over the phone. The bad part of having this conversation on the phone is that your time is more limited and you don’t think to ask the questions you should ask.
My doctor told me that the MRI shows a 3-millimeter adenoma pressing on my pituitary gland. This is too small to operate on. Typically, an Endonasal Endoscopic Surgery is done. This is where they go in through the nostril to remove the tumor. This procedure is less invasive and has a high success rate. It figures that mine can’t be operated on. Not to mention, I forgot to ask how big it has to get to operate or how long it typically takes to grow as I should have. In the meantime, he raised the dosage on my medicine and told me we will watch it every 6 months.
I am stuck knowing there is something growing in my brain that should NOT be there. That sucks and is scary. I am also stuck with the side-effects of my new medicine that really, I have no choice but to take. Then there is my anxiety. I have to work hard at keeping it at bay. A person who has anxiety plays the “what if” game a lot in their head, so it takes conscious effort to not play that game.
The moral of this story is if your doctor isn’t looking for another answer and checking all the boxes, then find a doctor that will. If you know there is something else wrong with you, then don’t give up. I have no idea how long this thing has been growing in my brain, but I do know for the last year I have known deep down that something wasn’t right. If any of this makes you want to get involved, then I have the perfect organization for you. Support Fibro is an organization that is dedicated not only to awareness but education. This is so important because like I said above doctors are not educated enough on fibromyalgia! I have even had a rheumatologist tell me she shouldn’t even be treating this condition. Please click the link for Support Fibro and if you are able, make a donation or find a way you can support the cause because a Fibromyalgia Warrior you love needs answers.
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