excessive lactation

My 19 yr old daughter has been in a lot of pain for the last 2 years.  Her breasts swell and leak excessively and are very painful.  2 yrs ago, her gynocologist said her prolactin level was slightly elavated and sent her to an endocrinologist.  MRI of the pituitary gland showed it only very slightly enlarged, and she was sent to a breast surgeon. Breast surgeon found nothing wrong, gave her advice on foods to eat/stay away from.  The leaking and pain is so severe that naturally, this did not help.  Now breasts are hurting, schaffing, leaking and last MRI showed nothing.  Prolactin levels are more normal and the Dr. gave her pain killers.  Please tell me what kind of Dr to look for that can figure out what is wrong...she cant be on pain killers all her life.  Shes only 19 and this is ruining her life.

[SarahB79]

if her prolactin was elevated then she most likely has an issue and just needs to see a different endocrinologist.  Even in the "normal range" I can lactate.  I am currently at 15 and my dr. is threatening to increase my medication.  I have had 2 MRI's, the first showing an enlarged pituitary gland and the second showing the same.  However, both MRI's were done wrong and with a tumor the size of a pea (give or take) and MRI could easily miss it with a 3mm or 5mm slice per image taken.  

There are other causes to elevated prolactin and lactation, but they are far less likely than a pituitary tumor.  She needs to find a new endocrinologist and have them test her for thyroid, acth, prolactin, cortisol, testosterone, Dheas, fsh, LH, etc.  

[rumpled]

I had a prolactinoma and my prolactin was... barely elevated and most of the times it tested normal!

I had a LOT of breast pain. I was fully lactating out of both breasts and one very rude doctor, even after seeing it with his eyes, had the nerve to tell me that the tests did not support my lactation! Er, well, dude, sorry that my body did not cooperate with the lab ranges!

She has an enlarged pituitary gland - dollars to donuts, that means she has a pit tumor. She needs to get on the med to reduce the prolactin. Even if they think her levels are normal, ask for a trial to get her symptoms. I finally did get that to dry up and it made my life so much more tolerable.

Pain killers are not going to work - she needs anti-prolactin drugs. And testing to find out the source like Sarah said.