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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.

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jiryan | @jiryan | Dec 5, 2025
In reply to @drs22 "I had Cushing's Disease and had a pituitary tumor removed in 2015. They believe I probably..." + (show)
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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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lukekee (Vivian) | @lukekee | Dec 5, 2025
In reply to @jiryan "@drs22 I thank you for your story, so motivational, I need to have the removal done......" + (show)
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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jiryan | @jiryan | Dec 6, 2025

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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jepsuh | @jepsuh | Jan 8 7:20am

Hey!
I was diagnosed a month ago and sent into surgery a few days later; as it was causing pressure to build in my head. Recovery from the surgery has been fast and steady but the hormone replacement is another story. Right now, I only have to replace a few, but today's blood tests suggest that more are needed.

I lived a pretty sedentary lifestyle before, although I was actively trying to change that before the tumor was found. My energy levels were typically low and I hardly wanted to do much after work.

I hope to regain my strength soon and have my medication adjusted to the correct doses. I still have hope to return to a relatively normal lifestyle.

Wishing you the best and a fast recovery!

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lukekee (Vivian) | @lukekee | Jan 8 12:32pm
In reply to @jepsuh "Hey! I was diagnosed a month ago and sent into surgery a few days later; as..." + (show)
Profile picture for jepsuh @jepsuh

Hey!
I was diagnosed a month ago and sent into surgery a few days later; as it was causing pressure to build in my head. Recovery from the surgery has been fast and steady but the hormone replacement is another story. Right now, I only have to replace a few, but today's blood tests suggest that more are needed.

I lived a pretty sedentary lifestyle before, although I was actively trying to change that before the tumor was found. My energy levels were typically low and I hardly wanted to do much after work.

I hope to regain my strength soon and have my medication adjusted to the correct doses. I still have hope to return to a relatively normal lifestyle.

Wishing you the best and a fast recovery!

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@jepsuh
Glad you are recovering quickly and hopefully they will get your hormones at correct doses so you can get back to a normal life.
I saw the neurosurgeon in December and he said that they can’t say with 100% certainty that the tumor is causing my issues because it is very small and the latest blood test shows my cortisol level almost back to working range. He wants to wait and see and do another MRI in 6 months. He also wants me to see the team of endocrinologists that he works with so I have an appointment with them in February.
I told him I want it out but he doesn’t want to do the surgery unless it can be proven that it is causing my symptoms.
I’m just at a loss right now. They have started me back on HRT and meds for all my other issues and I do feel a little better but I hate having this on my head.
Anyway, glad you are doing well. Prayers that you continue to improve.

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lukekee (Vivian) | @lukekee | Jan 9 5:59pm
In reply to @lukekee "@lukekee I forgot to ask was his a small tumor or a large one? Just wandering..." + (show)
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@lukekee I forgot to ask was his a small tumor or a large one? Just wandering if it made a difference in his recovery.

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@lukekee
Sorry I just now saw your message. It is small 4 mm and the surgeon wants to wait and do another MRI in June to determine if it is fast growing or slow growing.

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hopefulmama | @hopefulmama | Jan 11 4:23am
In reply to @astaingegerdm "@lukekee My daughter had a pituitary adenoma, , causing Cushing’s disease. She had most of your..." + (show)
Profile picture for Ingegerd Enscoe, Alumni Mentor @astaingegerdm

@lukekee
My daughter had a pituitary adenoma, , causing Cushing’s disease. She had most of your symptoms plus others.
After surgery, the symptoms disappeared.
Make sure you get a neurosurgeon specializing in pituitary tumors. Not all do.

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@astaingegerdm
Hello,
Glad to hear your daughter is doing fine. My son is recently diagnosed with this. Would you please let me know which doctor did the surgery for your daughter?
Thanks

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Profile picture for Ingegerd Enscoe, Alumni Mentor
Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Jan 11 9:41am

@hopefulmama
I’m sorry to hear that your son has this diagnosis.
My daughter was operated by Dr Oldfield at UVA, Charlottesville, VA. I’m sad to say he passed away - he was extraordinary.
UVA has a dedicated pituitary team of endocrinologists and neurosurgeons.
Take your time to find the best hospital and surgeon- even if you have to travel.
Wishing your son a good recovery!

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jojobunny | @jojobunny | 1 day ago

Oh man! Pituitary tumors and surgery is a wild ride. I also struggles with the same symptoms for years. I had seen Gi, Gynecologist, neurologist, cardiologist, and pulmonologist for my issues. I wasn’t getting any answers. I pretty much diagnosed myself. I have a background in Medical Laboratory Science. It took me to Mayo and they confirmed that I did have a pit tumor causing my issues and it was Cushings. I was on my thirties when I really started to get really ill. By forty two I was just so sick. I had my first surgery in April 2025. It was unsuccessful. I am now taking Korlym daily to help while I wait for a second surgery, either pit or adrenal. I literally thought I was going crazy. It strained my relationships at home and work. Cushings is a very devastating disease because it has effects on every cell in your body. I hope your journey is better mine. Good luck, be persistent, and learn to love yourself at every stage. It’s an ugly battle.

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