My wife has been dealing with this for 6+ years..... We gave up we knew it wasn't psychosomatic but the doctors were failing us. Finally got diagnosis when her eyes drifted apart. The tumor is now 4.5 cm a giant prolactinoma. Turns out the problem was all in her head after all. We meet a second surgeon today..... 🙏

So happy I found this video ❤️ I'm not alone.... this journey has been hard for me. I pray for everyone who is going through the same as me.

We need to normalize taking peoples symptoms seriously. I'm going through this right now, I have alot of pretty scary symptoms I still have no answers, have been told to see a phycologist and that I'm basically crazy.

I was diagnosed with non functioning pituitary tumour last September, this was after months of trips to the Drs saying how unwell i felt and 2 years of bad vision in my eye. In the end I nearly collapsed and ended up in hospital with the lowest levels of cortisol, potassium and sodium ever seen in a person still functioning. After an MRI the tumour was found, I am on my 3rd consultant, 2nd specialist hospital. Migraines are unbearable and I just want life to go back to normal 😪 Good luck to you all who have come out of the other side.

Wow what a story, Amy. It's really cool to.see that everything going so well with you.- Shawn Wendt

Wow !!! I wish this method had of been available when I was 14 !!! I had my pituitary tumour removed and now have a nice scar from ear to ear and am on 5 hormonal meds ! I don't understand how they diagnosed her with the one thing though since the pituitary gland controls so many things!

I’m so happy I found this video. I doctor is referring me to a endocrinologist because she feels this is what’s going on. I have the headaches and I don’t have my monthly cycle. Thank you so much

I too have a pituitary tumor acromegaly and will have to undergo brain surgery soon. I have started to vlog my journey. Thank you for this video.

I just got diagnosed with prolactinoma today! I do feel the headaches and stuff and I feel her on that

Would love more info if any experts out there ?

I have this and I'm glad I found out I did a video. I'm so scared tho. I have no one to talk to.

geez i been going through this for almost 3 years this sucks.

After watching this video, I just don’t understand after going through headaches for so long, why an MRI or any scans/ test were not recommended. I was diagnosed with a pituitary tumor Sep 2022 a week after having my baby. It became very life threatening but luckily I survived. Mine was found with an MRI

After years of my hair falling out, irregular periods, and excruciating headaches, I up and moves to a new doctor. I had thought hormones, PCOS. My last doctor, upon the results of a transvaginal/transabdominal and a normal thyroid test, decided I was just making things up. Nothing could explain what was going on. This new doctor tested for hormones. Testosterone was normal, but prolactin was way too high. I am scheduled for an MRI on August 3rd. Now, this being said, I also have MS. Have had it for 3 years now. I’ve had multiple MRIs of my brain to check for lesions. So how, if I do have a prolactinoma like my new doctors thinks, how has it not been seen already?

How much pain be after the surgery ... days to feel better

Lots of Drs failed me. I take cabergoline. But my tumor is growing so this month we will be discussing surgery

13 years to get a diagnosis...in 2006. Miserable...

I just wish and pray for a doctor to detect it in me someday b4 its too late.

What are the chances of my tumor coming back?

We know its not natural for us to become anxious, sleepless ,numb in many areas, vision changes ,concentration ,dizziness weakness ,menstruation probs ,weightgain,metabolism changes,all at once.sadly I return home from doctor hearing that I may have a anxiety disorder that's it.well I know its something more than that and yes pituitary tumour makes sense though its hard to detect it.

My wife was diagnoses as well they are recommending medication first before surgery

Oh my God me to a T. The depression diagnosis- yes! Finally my legs swelled up so bad i couldn't put my shoes on. I went in and asked him "is this depression?" I was in early kidney failure. It took four more years for my tumor to be diagnosed. The first MRI missed it but every neuro who has seen it says it never should have been signed off on because the image is so poor. I'm in a pituitary tumor group on Facebook and sadly this is so common.

I’m quite curious how this effects men as I might be one. My prolactin levels are super high, no libido, no energy and migraines all day. Been given a MRI to look at my gland. I was never this way before but got bad Covid back in November so curious what will become of this. This gives me hope that there is light at the end of the tunnel.

I never had a surgery to remove the tumour, I’ve had time that’s unforgiving pain throughout the body’s system, confusion, headaches, loss of energy or drive, it’s been 4 years of hard times me my wife family, in Australia

I have all the signs and symptoms. I am having the surgery this coming Wednesday April 27th, 2022 at UAB NEUROLOGICAL CENTER DR. RILEY. I'm not nervous nor am I scared I don't won't the catheter, but hey I'll be sleep and it's only for a day. GOD has the final say so and it's in his heads. I'm looking forward to getting it over with and the road to recovery. My motto is nothing last forever bc as soon as something starts it's already in the past. GOD BLESS YOU ALL. By the way I am a male so no menstrual problems however the testosterone is very low, I'm so waiting to fix that and get back to business 🤣🤣🤣

I have been taking bromicriptine for 2 years now for high prolactin my doctor take me off 2 time because it went into normal range and 3 months later it go up high again and now he is sending me to some specialists and am really scared because I mite have to do surgery

I haven’t had a period in 2 years. I’m under 40 so menopause is unlikely. I’ve also always had irregular periods. Went to do a physical and bloodwork. Lab came back that I have high prolactin. We did another blood test so just waiting. I personally hope that this is the issue and nothing worse

I am undergoing similar problems for abt one and half yes.I just pray that God guides me to healing and cure.

I had a tumor and cyst on my pituitary gland. I had them removed by transphenoidal approach. My symptoms were migraines, no period and breast leakage.

I'm so tired and exhausted all the time and have had horrible headaches. My vision is weird but I still see. I'm producing breast milk after 8 years of not breast feeding. I asked my doctors to check my bloods today and I have to wait to see a doc before they will do that. I've already been diagnosed with anxiety and depression. I feel like no one listens I also have endometriosis, but so far the only care I've been offered is total hysterectomy and ovary removal! Why can't they just look into the hormonal issue?!!!

did anyone have shoulder pain? I have high prolactin havent been diagnosed yet had an MRI 4 days ago!

My story is A little different . My wife and I were rearended by a semi truck doing 50 while we were stopped .i went to er and later was diagnosed with concussion and several herniated discs in my neck and back . That was July . In October my blood sugar went to over 500 and stayed there . In December my left side of wy face went numb ,went to er they said bells Paul’s and we found a brain tumor .its been a hell of a ride .finally saw neurologist said it was 10 mm and has grown to 13 .wondering how big does it have to get before they operate? Thank God no headaches but break into crying fits all the time,weight gain,no energy,snap on people especially wife and daughter,won’t speak to me anymore .tthey don’t understand.ready for some good news for once !

.my pituitary tumor is 4.4 × 3.7 mm and doctor suggest cabergoline..

I have a friend who has the same case as Amy. Is it really necessarily to undergo surgery? I'm so worried about her. She's been taking medications for more than a year but the tumor isn't getting smaller.

Hi everyone! I was wondering if there has been anyone that has had the surgery ,and what their recovery was like? I was diagnosed with the tumor in December of 2015...three different failed attempts at medication I am going to see the surgeon then end of this month to discuss about surgery. I am turning 17 next month and I am very scared and was just hoping if anyone would be willing to share their recovery and an update on how they are now after it? Thank you❤

I hope my story ends up like Amy's.

Similar story not the same but.. Takeaway... If your doctor isnt Helping you ...DUMP them. find the care you need. Thankfully I did and my new doc got me a new specialist that did the simple hormone test that discoverd my problem and drug is working. Bumpy and scary road though.

I have one and been trying to get pregnant for 12 years!!!!! no doctors will prescribe me cabergoline or bromocriptine even though I have symptoms

Doctors told me I have the same at age 23... i will be 31 in 2 weeks. I have a Prolactinoma microadenome in pituitary... I want to get it removed but I am so scared of the risks 😢😞

Joe Slacker 3 hours ago (edited) I'm pretty sure I have this or something close to this like a prolactinoma. I get the diabetes inspidis (thirst badly sometimes so sever I can drink a gallon and i'm still super super thirsty) Very frequent urination. Urinating in bed (a little bit sometimes). Have these odd sensations in my head. Loss of vision with sensations. One eye will seem like I can't see out of it and then I'll close the other one to confirm myself I can still see out of it (some will alternate one or the other). At night time right before sleep I'll almost go completely blind in one or the other rarely but sometimes both. Extreme confusion at times with a lack of vision and hearing. Vision of colors gets very enhanced at times only for a brief few seconds. Feeling of terror or fear on a regular basis (not a thought but a sense or feeling ps. TERRIFYING). Low attention span at times (very hard to sit and read things). Poor short term memory and memory loss with previous events in my life (almost all of it). Can't feel the left side of my body at times or there's an awful feeling I've never experienced before in them (left arm and leg mostly). Sometimes I can wake up and not feel my entire body. Sometimes It feels like I'm not INSIDE my body. Pressure inside my head at times (feels like inside the skull around brain). Tingling inside the back part of my head and other areas as well sometimes (Crawling feeling). Tingling in face (somewhat rare but lately I've definitely noticed this). Stopping mid conversation and ask what we were talking about right in middle of sentence over and over and over all day (this has gotten a little better though). Staring into the distance at random times. Sense of impending doom (95% a former symptom). Muscle ridgidity (can't work out like I used to). Muscles weakness. Fatigue. Waking up 10-15 times in sleep. Severe insomnia for a few weeks. Feeling like I'm extremely high in my sleep (not a good feeling but almost like I smoked some adhesive or carbon fiber or something). Feeling like I can feel myself dead in my sleep ( if I dream about falling off a cliff and dying I'll feel myself dead somehow). Moaning in my sleep (like when someone gets injured really badly in some sort of an accident). Lower to mid back numbness and heat from lower back as well sometimes. Upper spine or upper mid back where top vertabre is is numb as well. People look fake to me (might be a vision problem). Severe weight gain. Bloating, distended stomach. Constipation. Chills in the mornings after waking up. Severe anxiety at times. Zero sex drive for a few months and recently it has sky rocketed.

searching out alternative treatment.

ive been diagnosed for prolactonoma ive been drinking medicine since 2014 but now my doc. suggested to done a surgery but im so scared for this is connected to brain. Is there any way to cure this deceased.. Many thanks hoping for ur reply

I have a micro prolactinoma since 1999 now have hyperthyroidism as well does anyone else have same?

did all of you ever had radiation for pituitary?

I have this I was diagnosed at 22 AMY has the exact same signs that I am Going through I live in cincinnati and I first went to mercy then I went to Christ and christ tried to tell me that I have real bad migraines...I knew that wasn't it because the migraine meds made it worse..I would like to have the surgery because I know that I want to have kids and get rid of these horrible headaches I am just thankfull that I see that it's common and it is a cure.This video was very helpful to me Thank you Amy for sharing you story after this I LOOOve you tube even more now.

Is there anyone who got diagnosed only with medication for pituitary micro tumour ? Which is less than 1 cm in size

they found a tumor and there taking it out on april 6th any advice when did you go back to work how many days did you stay in the hospital when can you eat when can you take showers please any advice the mri showed that my daughter had a size of a walnut is it safe to say they will get all of her tumor out!!! did u get back hair and did your hair break off well my daughter hair start being healthy again after they put her on hormones pills

2016 to 2021 my prolactin not balance pcod PCOS headache etc😭😭

I am undergoing similar problems for abt one and half yes.I just pray that God guides me to healing and cure.