Been having all these problems for 8 yrs. Just diagnosed 4 months ago. Story's are brutal. I thought I was getting old at 40 and my wife thought she just didn't do it for me. I told her you could line up playmates' from here till tuesday and I'd tell'em all ur blockin the tv.
Thank God for patient wives! But I.m coming to the conclusion that she has a life to live and deserves it to be a happy one for herself.
Somebody please tell me u get some drive and passion back.
With the meds I seem to be Extreme man. Hypersex, or none. want to eat and there is no off switch or nothing at all for 2 weeks. Life of the party or run me over with a truck. Sound Familiar ... Thanks I needed that! Any body else with chroic pain and sleeping but feeling like your just laying there awake?

hello CountVertigo. your story rings so true in my ears. Good word...Extremes. Trying to keep it level but its out of my control. enjoy the good. overlook the nasty. apprietiate your wife and her understanding. the chronic pain i have is in my feet mostly. makes it hard to get up and get active to lose weight. God bless.

Gentlemen,it does get better. I started this forum a year ago and I have since been treated with each. The tumor has shrunk. I am happier, thinner,sexier and healthier than I've been in ten years. It will get better for you too.

Thanks turtleman. I knew there was hope. great to hear some one living it.

Thank you all for your encouragement. My tumor stopped secreting in 4 months. mine is a little bigger than 1cm. Doc gave the go ahead to start with the T. I was so happy. 2 weeks into it, I can feel it getting bigger already. Gotta stop it. The headaches are debilitating. Prolactin shot back up. Any body have luck getting short term disability? I feel like if I could get someplace and work on physical stuff, lose weight get in some kind of shape it will make recovery easier. No Hormones No results.
Anyone find things better after a physical transformation?
I said once to my doctor that because these tumors are growing and pushing on other things up there everyones experiance will be different. Do you all find that true? I'm Just getting started in this group. Nothing here in Delaware. So i am gonna be a pain in your butts with questions and run on sentences for a while.

36yo Male

I have just been told 2 hours ago by phone that The mri showed a 6mm pit tumor and was scheduled three and half week out with Dr. Andrea Utz at the Vanderbuit pit center in nashville.

My complaint to the doc was tender nipples and weight gain after starting a diff antdepressant. I had stopped the meds and symptoms remained so I had a blood test done and prolactin was79 and free test was .05ng.
I was scheduled for an MRI. and waited for 3 days untill a couple hours ago, I got a call informing me the news.

Nurse had called and didnt really have any info except something was found in the pit and it was 6mm and that she scheduled for three and half weeks out with a specialist..

Does that long to waist seem a bit excessive? should I see this as they dont feal it is life threatening? does the elevated prl and almost no free test point toward the more common pit tumor for a prolactinoma?

I think i have had this for awhile but just got worse with meds. I have had almost no sex drive for years and we thought it was my wife that was having trouble concieving another child, we have a 4 year old now.

ive been depressed for awhile. mood swings, lost libido, weight gain, emotional.
does this all sound normal for a prolactinoma?
This has just hit me like a ton of bricks and to be honest, I am scared and feal quite alone right now even though I have my wife, she just cant unserstand the fealing of the blow that just came my way.

Does this mean im dying? I cant help but think I just got a death sentence. Ive done alittle research and found most these are not cancerous. and however it seems that I have a prolactinoma, she only said pit lesion. I just keep thinking im dying and am not going to get to see my daughter grow up or be there for her when she needs me.

has anyone heard of this Dr. Andrea Uts at Vanderbuilt TN?

sorry for my ramblings, I just dont know who to talk to.

Hey boys,
So good to find an active forum about this topic.

A bit about me: I'm 34, from Windsor, Ontario. I've suffered from chronic pain (neck, backache, tiredness, weird facial sensations) since 2003. Doctors could never diagnose anything even after head MRI, Cat Scans, and blood work.
About 6 months ago I went to Dr. complaining about lack of libido and they decided to test my hormone levels. To my surprise they found my prolactin levels where high (about 80) and testosterone was (15) not sure what the American to Canadian conversion is. (Apparently normal for Pro is 1-5 and T is 30-50 for someone my age). Well they did an MRI and found a 7mm 'noma. He started me on Dostinex (now taking the generic) at 5mg 2 times per week.
I've had no real side effects to the medication except for mood swing, not really sure if it's from the meds or the increased levels of testosteron. My girlfriend says I'm different, I feel kinda normal but know that I'm a bit more on edge and get angry often. My chronic pain which changed my life has slowly started to disappear and have been gaining muscle and haven't really been going to the gym.

I don't really have anyone to talk to as nobody can really understand what I'm going through, happy to be feeling better, but this nagging feeling that I'm going to change, since the Doctor feels my T levels have been low for a very long time, maybe since early 20's.

So nice to find this forum as many of your stories sound so familiar.

Just had 5 month follow up with the Endo and everything seems to be on track, Prolactin levels are normal now (0.6 from 80) and T is up to 36 from 15.

I am realizing now that I have never really had a strong libido and now I feel like an 18yr old...such a weird feeling. Now I know what a "real" boner is, lol.

I hope this rage felling I get will subside, don't think my fiancee can handle much more of my attitude. Anyone have any advice? is it the meds or is it the higher levels of T.

Nice to be at all of your acquaintance. I will keep my progress up to date.

Hi Baracka169, all your symptoms sure sound normal for a prolactinoma. I had/have a Macro or large tumor in addition to what you describe for sytoms i had all but lost my sight cuz the tumor was so big it pushed on my optic nerves. Im not a Dr. but im sure its not a real death sentance. with treatment things change and get better. with lots of peaks and vallies. do not dispare!. i would say that within days of starting the cabergoline med. my sight started to change which ment the tumor was shrinking. i think its been close to 10 months for me now and i have had about 50% shrinkage. chin up, Gods grace. and love life.

Hello Spotvin, see the discution topic anger control. there is some good advice there in some of the coments. i know exactly what you are going through. take care.

Hey Spotvin, that all sounds familiar. I swear I'm going through puberty for the second time! I've just turned 33 but I swear I feel like a horney 15year old.

Got my first MRI results next week since I've been on Cabergoline since last May. Fingers crossed it's shrunk a bit. I'll let you know how it goes.

Hey Baracka615 and Spotvin and of Course ChaRLES.You first 2 guty story reads like a book. Baracka 615 you'll live. I believe the only real risk to life is if it gets really big like Charles and mine and it grows juxtapositionally (hacked that word) , next to, on to, the corroted artery. If that happen and it bleeds then it becomes ER surgery. Bleeding would cause stroke like symptoms. Happens rarley.
I'm not a doctor but I play one at the Pharmacy. Some of this stuff I can decipher. I am going to Johns Hopkins. I think Baracka asked about Doctors? East Cost people I would recomend Hopkins or U Penn. West Cost Probably UCLA. If you go to any of their web sights they all have great info. UCLA was my favorite for information about the condition.
It takes a team of Docotrs to oversee these issues. Everyone's experience a little different but all with common themes. Spotvin was the first guy I heard comment about the chronic pain. Who knows, Low t , depression, My Primary care doctor asked what it feels like and why I want to take the narcotics. ( if your doing well without them dont take them!!!!) I told him I would call it tin man syndrom. I feel like the tin man. I can exercise and diet and loose to weight and never recover from a workout. Thats the low T.
My first experience with the Neurosurgon did not go very well. I thought I asked a good question, "How many surgurys have you done like this?" He said, "a couple"
He was trying to lighten the mood and be funny. Do not look for humor from a neurosurgon! Truth is at some of these top notch centers they do 3 per week. Rip them out right through your nose. Surgons always want to cut but the Endo guy will want to keep pushing drugs. I make a living pushing drugs but they have their limitations too.
You dudes on Prozac. Have one question. Why did your doctor prescribe a drug that causes the same type of sexual dysfuction as the tumor????? Do you feel better? And hows the sex life?
I wrote in my journal how the anhedonia is killing my relationship.
i Just don't find pleasure in it. No big Wow moment. I want a Wow moment. But this week Im just trying to keep from going over the deep end. Very depressed, very much in physical pain. I know I need to start exercising. I want to do what turtleman is doing without freezing my butt off. Good Luck to yous guys. Hope some of this was helpful for someone.
II find if I pet my cat andplay laser tag with the kitten and laugh it helps a lot.
I just know there is a joke we could write about three guys with a prolactinoma in a bar. I see punch lines like we all have boners but don't want to use them, Wanting to kill and yell at people for silly thins then crying when a pretzle falls into your beer. Gotta be some good jokes in here.

thanks for the replys,

I got in my my GP to talk today because i couldnt wait so long to talk to someone after hearing the news. I do feal alittle better now. im still scared, worried, she gave me a few xanax to calm me down.

and that is so true count vertigo. you make jokes at the end of your post but i swear i have gone crazy and could flip either way from rage to crying from that pretzel. low T causing this? I swear I have never been such a sensative bag of mush before. I find myself wanting to tear up at commercials lately, WTF?!

Yeah, I don't know what you do for a living so the medical stuff can be intimidating. I'll try to keep from refering to it to much and let the doctors handle that stuff. I don't want to give poor information and the point of this forum is to provide support for each other from people who are going through the same thing. If anyone thinks my medical detail is bad for the forum just tell me to shut up, I won't take it personal. The pituitary is nicknamed the master gland it also hangs down from the hypothalmus another major player in the endocrine system. Depending on were the tumor is and if or how much it secrets hormones depends on how you feel. Hormones all work on feedback loops and mechanisms. Unfortunately it's not as easy as replacing one hormone. If it were we would not need this group.
I like my testosterone and I miss it. The Cabergoline worked to bring down my Prolactin. Doc thinks my Tumor scared my pituitary or I hurt myself with testosterone therapy before my diagnosis. I see all these commercials on TV now for Low T and i wonder how many GP's are just prescribing it without checking the guys prolactin. It should be made manditory. But when I started the T shots 2 weeks ago my tumor started growing back. It has got me really down. But I don't know how many people got there life right back on track after surgery. And I can't really demand they take it out. So all I know about me is without T , I'm tired all the time but can't really sleep, to much T I am a maniac that thinks he's 20 again, I usually hurt myself and then the tumor starts to grow and secrete prolactin and the T takes a dive.
Yes Baracka615 it can mess up your mood.
But look at the bright side. Millions of guys out there just think they lost intrest in women and it's just what getting old feels like.
You know why, you know it's not normal, you know you can get some drug therapy and emotional help.
I just broke down and told people at work that i need them to be more patient with me and any pissy moments I have it's not deliberately directed at them. They were very understanding.
It's actually become quit the joke, they ask me who is at work today or if i'm in a good mood. They have been great at knowing when I need a break or need to be kept away from customers.
I'm beginning to figure out that there will be a new me at the end of this. I believe I may need to make changes in my life that provide more routine. Wake up times, work outs, diet, sleep time and work schedule. You know a more normal life in a very abnormal paced world.
By the time your done you will know more about this stuff than your GP. Insist your specialist talks with your GP. On days like today your GP will be more accessible and needs to know how to help you.
I find Xanax helpful, but I hate benzodiazepines , quick acting, sedating. If you use them to often you will get depressed. They can be very helpful if you use them judiciously.Don't rely on them. If you become a bummed out mess get in bed and sleep them off. I over did it over the last 3 days and am starting to feel myself again.
If you haven't noticed I'm very open about my experience. I have clicked the e-mail me box when others reply. Wish to chat more frequently.

Thank again for the information,
I am getting a crash coarse in all this and it is a bit overwhelming.
I seem to be in the "why me" stage. i guess thats normal.
I called and let my family know today and that was quite hard to do.
my brother is an identical twin and must have been hard to hear that.

then I found out his wife has had siezure after siezure this week and his mother in law just got diagnosed with breast cancer.
its been a rough week for medical news in my family.

I dont know anyone here but it is comforting that you guys are here and I am not going through something that I wont have anyone to talk to that understands what it is that is going on with me.

Thank you

So I've just had my latest MRI scan after being on .5mb of Cabergoline per week for 6 month, and my growth has shrunk from 12mm to about 10-11mm. Not much of a shrink but I guess it's at least moving in the right direction. My Testosterone and Prolactin levels are now back to normal and I'm feeling great.

I was just wondering if the shrinking seemed a bit slow to any of you? I don't really want to increase the amount of Cabergoline I take a week as I don't really seem to get any side effects at the moment. Maybe a bit of paranoia and some mood swings but nothing I can't manage.