Pituitary tumor/prolactinoma

Well I am off to the doctor again tomorrow... I still have not been diagnosed, but for anyone that may be curious, my symptoms were long but mostly involved heavy bleeding for months, no bleeding for months, spotting and cramping.

Yesterday, I had a newly noticed' symptom, lactation! Yikes! I realize now, this would be my third time feeling 'engorged' over the past 2 1/2 years. Yesterday it hurt so bad, I checked to see if there was anything, there was.

So on to my research I went... A pituitary tumor that causes elevated levels of prolactin, which in turn cause almost ALL my symptoms! (I know it is weird, but I would be very happy to find out I had a brain tumor, strange indeed, but a diagnosis offers hope!)

So the heck with it, I want answers, called doctor, getting prolactin levels drawn and MRI of uterus to confirm or rule out adenomyosis. I can't take not knowing anymore!

Anyone else suspect something like this? Or have been through this and can share their experience?

I was diagnosed with a benign pituitary microadenoma years ago. They suspected it when they discovered that my prolactin level was high and a CT scan confirmed it. I was monitored with yearly MRI's until it mysteriously disappeared all on its own. I honestly haven't had my prolactin level checked in awhile, but am more concerned with the possibilty of endometrial cancer right now. Going in for a D&C and a hysteroscopy tomorrow. If a pituitary tumor is small, then they can oftentimes just keep an eye on it. They are almost always non-malignant. If its bigger or starts to cause further problems, they can remove it surgically (which they usually do transsphenoidally, either through the nose, or over the upper gums). Sometimes they can treat imbalances with medication. Good luck, I hope they figure out what's going on so that you can get things fixed. Having things up in the air can be more stressful than finally having a diagnosis and being able to put a plan of action into place.

Thanks for your response and sharing your experience. I am sorry you are worried about endo cancer, it is a scary thing for sure. I went through that two years ago, so I am sure you can see why I would be relieved with if i actually had a brain tumor. I had my prolactin drawn this morning, so I will be anxiously awaiting those results. I, of course, expect them to come back normal, like everything else! I just wish I could get a diagnosis.

I will pray that your D&C and hysteroscopy will be clear. Keep in touch and let me know how that goes for you. And take it easy for a few days, it can take a bit out of you that you don't expect!

My prolactin levels came back as normal. Now what? I have a mammogram scheduled for next week, so now I can add "breast issues" to the long list of symptoms without diagnosis.

Someday....maybe I will find an answer and treatment. Although. Am glad that I checked this option, because I sure would have been upset if I had a hysterectomy only to find out it was a brain tumor.

How did your appt go today? I know you won't have results for a day or two, but keep in touch! i am praying for you!