Prolactinoma Support Group

I understand how we all go through a roller coaster of emotions through out this and with our hormones out of whack, everything is so overwhelming. But it seems that you have a lot to be thankful for too. You have finally found a doctor that listened to you and has started you on treatment that fits your diagnoses. You were able to have four beautiful babies, where as some of us are suffering with infertility. You also have accomplished a lot in your life with a college degree and serving our country, which we are all so grateful to you for doing. I think that if you ask any one of us on here, we have been through a lot too. Just to tick off a few of my "why me's", my dad died suddenly when I was 15 ( I was a true Daddy's girl), I married my high school sweet heart, who was very sick the entire time we were together and due to a drug addiction on his behalf, I divorced him a year later. I ended up with my checking account overdrawn, my savings account wiped out, and my credit card overdrawn, thanks to him. When I remarried and decided to start a family, I too was misdiagnosed and almost 2 years later found out what was wrong. After several months of treatment, I again had another blow, I also have PCOS. So a year and a half later, still no babies, not even a positive preg test. You can lay down and cry "why me" or you can look at what you do have and decide to be thankful for it. You have to make the decision that this is a learning experience and it will make you a stronger person. Your doctor seems to be doing the right thing, I take a different drug called cabergoline, and within 7 months my 9mm tumor was gone. Good luck and God Bless.

I can completely understand what your going through. Not about the Army or what consist of it. Only about the prolactinoma. I was diagnosed a year ago with it. I'm also at my pragnancy weight still. It's horrible. I use to be a size 3 or 5 and now I'm far from it. I did not stop stop lactating after I had my baby either, that is what made me go see a Dr. Thats when it was discovered. I have been taking Bromo also but only 1 tab (2.5mg)a day. After a year I had to go back to have another MRI. My prolactinoma stayed exactly the same size. I was so mad! I took that medication for a who year and .....nothing. This support group has helped me so much because it's good to know someone understands you. There are people here to help you get through. If you have any questions don't be afraid to ask. Good Luck.

I actually went 10 + years undiagnosed. They knew about the high prolactin levels but didn't treat it until I hit rock bottom and self referred myself to an Endo. I have always been in shape between 118-130 and now I range 170-175. I'm even heavier than when I had kids I was in the 150 range. I exercise ALOT and eat well.

As for the course of treatment. It sounds right. I do think after a good six months of normal levels they may at least decrease your dose.

I'm finding everyone is very different with recovery. You really have to give it a try and see how it's going. After a few months of normal prolactin levels you might be more at ease. I know for me the first year MRI was twice. Now it will be done yearly.

Totally have your pitty party... but don't give up! Like CTPRINCESS said you've already accomplished so much in life! You can do this.

WELL I DON'T HAVE ANY ADVICE I WANT SOME. ABOUT 2 WEEKS AGO THEY FOUND OUT THAT I HAVE HIGH PROLACTIN. IN YOUR BODY YOUR PROLACTIN SHOULD BE 29 AND MINE IS 89, I HAVE BEEN HAVING HEADACHES FOR YEARS AND TRYING TO LOSE WEIGHT AND CAN'T. THE WORST OF THEM IS I CANNOT CONTROL MY MOOD SWINGS AND I HAVE A SON AND HE DON'T UNDERSTAND WHAT IS WRONG. SO I GUESS MY QUESTION IS WHEN WILL ALL THIS STOP?? MY DOCTOR DON'T WANT TO PUT ME ON MEDICATION YET UNTIL SHE FINDS OUT HOW BIG MY TUMOR IS AND CAN IT BE CONTROLLED BY MEDICINE...BUT MY HEADS IS THROBBING EVERY MORNING WHEN I WAKE UP, I DON'T FEEL YOU SHOULD BE IN PAIN EVERYDAY. HAVE ANYONE HAD THE SURGERY? IF YOU HAVE PLEASE INFORM ME ON WHAT TO EXPECT...

I had the throbbing headaches too and felt like I could not function. Once they started me on the medicine though, they started to go away. Within a month, they were gone. I know it is hard waiting, but once they start the medicine, your headaches should begin to lessen.