Pituitary tumor: Share your experiences, side effects, recovery, etc.

Posted by lukekee (Vivian) @lukekee, Nov 28, 2025

Hello! This is long so I appreciate anyone who reads and replies.
I want to hear from other people that have/had a pituitary tumor and their experiences with symptoms, surgery, recovery, etc.
Diagnosed in October by MRI and have an appointment with a neurosurgeon in December.
I want to know if surgery relieved your symptoms. I have a lot of symptoms that my endocrinologist says are likely from the tumor.
Symptoms:
Extreme sweating (not hot flashes)
Extreme fatigue
Joint pain
Head/Body aches
Zero and I mean zero energy
Weight gain
Nausea
Dizziness/vertigo
Itching
Mood swings
Sleep issues
Brain fog
High blood pressure
I should mention I have been going through menopause for about 8 years but Drs tell me I should not be having such severe symptoms for so long especially since I was on HRTs for all those years and just went off them in September.
My quality of life is horrible. I never feel like doing anything.

Interested in more discussions like this? Go to the Brain Tumor Support Group.

Profile picture for drs22 @drs22

I had Cushing's Disease and had a pituitary tumor removed in 2015. They believe I probably had CD for 5-6 years before diagnosis. I, too, was going through menopause at the time and the doctors cited that as the reason for my symptoms over the years. I had many of the symptoms you did. If you read about Cushing's, there are some very definite symptoms associated with it. I was finally diagnosed in 2015 and had surgery. The recovery can be a little difficult because your body has to adjust to the change in hormones. Once that was over, I felt great! I did do physical therapy because I had lost muscle from the disease.
I agree with some of the others in this post - an experienced neurosurgeon and hospital are very important (how many of these have they done?)
Let me know if you have any other questions. Wishing you the best.

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@drs22 I thank you for your story, so motivational, I need to have the removal done... you are testimony that healing will come, God's promises are real "this too shall pass✝️."It's frustrating not knowing anything yet in my case, due to lack of technology at the remote local hospital. I am researching potential reputable neurosurgeon who specializes in this procedure. I have never traveled far away, like the U.S. but it's where all the elite Doctors and Surgeons are. I'm nervous, but everyone's stories indicate that there is help available, I too can have a plan just like you all, I will find a team✝️❤️which is priceless, I have a chance to be rid of this. So thankful to you all for sharing, God Bless ✝️ you all from the crowns👑 of your head to the souls of your feet, Amen. Kindest regards, Jillian.🙏✝️🕊️🌍❤️

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Profile picture for jiryan @jiryan

@drs22 I thank you for your story, so motivational, I need to have the removal done... you are testimony that healing will come, God's promises are real "this too shall pass✝️."It's frustrating not knowing anything yet in my case, due to lack of technology at the remote local hospital. I am researching potential reputable neurosurgeon who specializes in this procedure. I have never traveled far away, like the U.S. but it's where all the elite Doctors and Surgeons are. I'm nervous, but everyone's stories indicate that there is help available, I too can have a plan just like you all, I will find a team✝️❤️which is priceless, I have a chance to be rid of this. So thankful to you all for sharing, God Bless ✝️ you all from the crowns👑 of your head to the souls of your feet, Amen. Kindest regards, Jillian.🙏✝️🕊️🌍❤️

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@jiryan I too feel like thete us hope for a normal life at some point in the near future!
I’ll pray for you that you are able to find the right surgical team and be able to travel if need be.

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Thank-you for your prayers, they are priceless, and the positive note and vibes. Kindest regards, Jillian. God Bless you friend!🙏✝️🕊️🌍❤️

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