lactation

[SarahB79]

Out of curiousity... those of you with PCOS, have you ever experienced lactation without pregnancy?  I have PCOS, but also thyroid disorder (controlled easily with synthroid), diabetes and a possible pituitary tumor.  The possible tumor is likely the cause of lactation, however it seems like it is too small to see on imaging.  So I am looking to see what other options are out there for causing lactation.  Any help would be much appreciated.

[SarahB79]

years ago my prolactin was very high, but for some reason I started birth control and the levels dropped to completely normal.  When my endo had me repeat the test she asked that I stop birth control for 4 weeks before retesting.  My prolactin was then 50.5.  

I told my primary yesterday about my frustration with it all and she scolded me for stopping my dostinex medication just becasue the MRI didn't see the tumor this time around.  She said just because the MRI machine isn't perfect enough to see something that could be very small doesn't mean it's not still secreting prolactin.  She said we have to assume there is a tumor because nothing else points to a cause for high prolactin.

[melissa_c]

I also have PCOS...I haven't actually experienced any actual lactation, however my doctor did notice that my prolactin was elevated which is what would cause the benign tumor and lactation.  My doctor had me do an MRI and it also came back clear.  From what I have read, it is possible to experience elevated prolactin even without the tumor.  Do you know what your prolactin level was at?  My doctor did not prescribe the medication to lower mine because she found nothing on the MRI and she said my level wasn't high enough to be concerned...but I think I need to go back and have her try again because even though I have lost quite a bit of weight and have been taking the metformin...my cycle still has not returned.
I have read that some articles that say that elevated prolactin is common amongst women with PCOS as well as articles attributing it to other causes.

[SarahB79]

Thanks!  yes my dr. knows about it.  I have been being treated for a pituitary tumor (that has gone unseen on MRI's though) for 11 months.  When on the medication my lactation stops, periods get a little more regular and other symptoms diminish.  However, weight gain, diabetes, hair growth, cysts, etc still remain.  

Since the tumor hasn't officially been seen on the MRI (they are typically very small), then I was beginning to look for other possibilities to diagnose the problem.  

I am apparently a collector of endocrine disorders, so my endocrinologist just keeps running me through the ringer with tests and prescribing medications for the symptoms.  I am starting to feel like a lab rat, so I am trying to look for more answers on my own.

[msniki412]

I never had any problem like that. The only thing I am noticing now, is that 2 weeks after my period (only this month it's happened) my nipples have been very sore and my breasts sore as well. I'm about 11 days shy of my next period so that might be why.

But I have heard of women having lactating problems even without having pcos. Have you brought this to your doctor?