You never want to hear your doctor say, “your brain MRI came back abnormal.” The fear and panic that goes through your body in this moment is 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.
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What is a pituitary adenoma anyway?
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 macro adenoma. It is interesting that some adenoma’s 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.
Typical symptoms of a pituitary adenoma
The Pacific Pituitary Disorders Center says that a pituitary adenoma can cause many complications.
- Hormonal failure
- Vision loss
- Headaches
- Apoplexy (bleeding into tumor)
- Loss of libido
- Fatigue/Weakness
- Dizziness and Nausea
What led to my diagnosis?
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.
Tests and More Tests
With the abnormal hormone levels, the doctor suggested we do an MRI. He told me that 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, remove 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!
Treating What Can Be Treated
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 with 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.
The Waiting Game
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 appointment for the results. I had to wait longer. I called the doctor on 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 like I should have. In the meantime, he raised the dosage on my medicine and told me we will watch it every 6 months.
How Does it feel emotionally?
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.
Advocacy
The morale 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!
Amber
I was diagnosed with Fibromyalgia in 2015. I can totally relate because I was just living with symptoms and blaming it all on the fibro. With the lack of help from my primary I just knew there was something else going on. It took a year but I finally got a new primary and diagnosed with Stiff Person Syndrome yesterday. I am thankful for those doctors who do listen and send us out for futher testing. I am thankful you were able to get more answers as well.
Suzanne
Thank you so much Amber. It is really sad what we have to go through to get proper care isn’t it? I am so happy you found a doctor to listen. Gentle hugs to you.
arun
I agree , most of the time without looking much into things, they tell that this also maybe due to fibro. I understand how scared you will be .best wishes, I hope things improve for you soon.
Suzanne
Thank you, I appreciate you well wishes. I also hope you start feeling better soon as well. Gentle hugs.
Maria
Thank you for sharing your experience on this topic. I am sure this will be very helpful to a lot of people!
Suzanne
Thank you Maria. I appreciate you visiting my blog.
Lisa Flynn
In jan 2019 I was dx with a 2.5mm pit tumor. In march after a bad case of bronchitis and pneumonia I started developing pain. Summer time dx with fibromyalgia. My pit tumor wasn’t doing too much last time. I have a repeat MRI coming up so we shall see.
Suzanne
Hi Lisa,
I hope it doesn’t grow or cause you any problems. I read that so many people have one and don’t even know it. I’m sorry you have fibromyalgia as well. However, I hope that you find comfort and community in my blog posts. Take care and gentle hugs.
Lisa
Thanks for raising my awareness of pituitary adenoma. I hope you will experience success with the treatments you pursue.
Suzanne
Thank you so much Lisa. I appreciate that.
Gratisoul
You are really strong! Just keep being positive!! I wish you a fast recovery!!
Sending some positive vibes your way …
Suzanne
Awe, thank you so much! That means the world to me. Always sending positive vibes your way as well.
Laurie Harmon
Thank you for sharing about this and how you are coping with it. I had never heard of this before. This was a very informative post.
Terri, Reclaiming Hope
I had the same experience with an MRI discovering a pituitary adenoma. I started having issues with my throat and my ENT sent me for an MRI. When the results came back, she told me there were no issues with my throat, but it showed a 10mm pituitary adenoma. She was going to send me to a neurosurgeon, but since I already had an appointment with my endocrinologist for my thyroid, I opted to just see him first. Like yours, mine is non-hormone-secreting, so we’re just keeping an eye on it. I know it’s scary, and I know what you mean about playing the what-if game. I’d just like to encourage you by letting you know I’ve known about mine for a couple of years now and it hasn’t caused any problems. I hope you get some relief from your symptoms with your increased medication dosage.
Suzanne
Thank you so much for telling me this. It really does make me feel better. I guess it is just one more thing I have to get used to. Gentle hugs!
Terri, Reclaiming Hope
I’m glad it helps. I remember how scared I was at first, but now, like you said, I just got used to it, and I really don’t give it much thought. Gentle hugs back to you!
theasiangut
Great information! I really learned a lot 🙂
Nyxie
I am so glad I stumbled upon this. I also have a pituitary Tumor but have been offered not treatment for the normal and physical impacts. It’s never once been mentioned to me!
Thank you so, so much for writing this, it’s inspired me to write about my own story and perhaps push my doctor more for a solution!
– Nyxie
https://www.nyxiesnook.com/post-5-quotes-that-inspire-you/
Suzanne
Oh my gosh! I am also so glad you found my article. Please let me know when you post your article. Also, let me know how it goes with your doctor. I know how hard it can be to advocate for yourself, but you deserve it!
Laurie Harmon
Hello, I nominated you for the Sunshine Blogger Award http://seekingserenityandharmony.com/2019/04/30/the-sunshine-blogger-award-11-questions-and-11-nominees/
Suzanne
Laurie, thank you so much! That is very sweet of you and I really appreciate it.
Ivette
I am going through this right now. I getting an MRI done next week. I had no idea who to talk to about this because no one understands or feels uncomfortable listening to what my body does. You have offer me some insight. I myself thought my headaches were part of my fibro until I started to have other systoms, it took forever to get someone to listen and not think I am crazy.
Suzanne
You are not alone Ivette! I know exactly how you feel. I was feeling crazy as well. Although it sucks that the adenoma is there, now they know how to treat me and I’m starting to feel better. That is something to be grateful for. Please feel free to reach out to me anytime if you need someone to talk to. I can be reached at fibromomblog@gmail.com also consider joining my Facebook closed support group https://www.facebook.com/groups/thechronicallystrongwarriors/