My story

I have been looking for a support group for so long, I am so pleased to see this group.

I was diagnosed in August 2013 at UCSF, they are very well known for treating Prolactinomas- they have a whole floor dedicated to it! It's great! When I was diagnosed I was 24.

I had been told for years by numerous gynos that I was stressed and I should take pills or exercise less (for my lack of a period). I assumed a little breast leakage was normal? Haha I didn't know. And the severe migraines, the doctors and I assumed I acquired from my mother- who gets them as well but for different reasons. It wasn't til the summer of 2013 that a new Gyno, Christine Sloan in Chico, Ca took a deeper look into what was happening and ordered an MRI and a panel and low and behold- prolactin levels of 700 and a large benign mass at the base of my brain.

I was diagnosed with a prolactinoma the size of a golf ball, about 1.5". It has spider legs that go off and wrap around my optic nerve on my right eye, causing me a few blind spots. And the length of me having has caused my ovaries to stop producing estrogen and progesterone. Because of these legs, the prolactinoma is inoperable and I will be taking cabergoline for the rest of my life. I get mri's every 6 months along with blood panels and doctor visits.

This was so discouraging at first, I had always wanted to have lots of children and now this was hindered by this stupid thing in my head, that I am constantly reminded of by my lack of period, the dizziness and dark spots of my eyes, the sythetic hormones, the severe migraines and constant doctor visits.

But with taking the cabergoline- it has worked wonders!!! I have been taking 3 pills, twice a week for the last 4 years and I took estrodial and progesterone for about a year. I just had an MRI two weeks ago and the latest results only show microscopic amounts of the tumor in there and I have had a period for the first time in 9 years! It's so exciting!

The tumor is maintained and I will continue to take the meds to keep it down. And it only has a 12% chance of growing more in its maintained state.

It's weird how you can forget what's normal? I don't remember feeling like this, and what I do remember was so long ago. Now the next step is trying to be pregnant. Wish me luck!

I honestly believe that my body responded so well to the meds was because I was trying both modern medicine and more natural approaches at the same time, like acupuncture, chiropractic, tinctures and diet/detox.

Did anyone have luck with pregnancy on cabergoline/maintained tumor? They would be keeping me on a low dose through the pregnancy and no breastfeeding.

Was anyone thinking they were pregnant but kept getting negatives? Is that even possible?

Best wishes.