I had my surgery at the University of Colorado in Denver. They have the top surgeons in the country......They told me my tumor was very easy to remove. It wasn't attached to the lining of the Pituitary Gland. My recoup time was difficult. I am very sensitive to medication so going back on Dositnex was a challenge while recouping. It took about a month for me to heal enough to work. but with going back on the medication was difficult because they put me at .5mg twice a week at once. My tumor responded well to the medication after I had the majority of the tumor removed. There was still growth inside one of the veins? i guess that connect to the brain? that part they could not remove. I wanted to do the Gamma Knife Surgery since they just shoot it with a laser and that is that. But my tumor was too close the my optic nerve on the left hand side. I still feel a bit lethargic and end up sleeping in the middle of the day but I think that is because they took me off dositnex for eight months. I just recently started taking dositnex again it has been about a month so I hope I start losing weight and feel energetic again.

Thank you for sharing your experiences. My endo seems to really downplay the negative side of surgery, and UCSF's web site seems to imply that I will be up and at 'em within a week or two of surgery. I'm meeting with a surgeon in a few weeks, but I'm really hesitant about surgery. I was initially worried about something going wrong in the surgery, but now I am worried about the recovery too! I can't imagine putting my life on hold for a month at this point!

Beccasmamma--Is the diabetes insipidus permanent? It sounds like a lousy side effect, but I'm not clear whether it's a temporary thing or not. Do you still think surgery was the right decision?

Just met with a fertility specialist to discuss whether fertility treatments would be an alternative to surgery. The answer is basically no. He said that normally he would prescribe carbergoline to patients with high prolactin, and that often does the trick. But since I'm clearly resistant to cabergoline, he said surgery is probably a better option. Specifically, he said that while it wasn't impossible to conceive with my elevated prolactin levels using fertility drugs, it would be extremely difficult and likely wrought with a lot of disappointment.

Also got my latest results back. They seem to be stabilized at 56 ug/L even with the higher dosage of meds. I was 86 with no meds, and still only down to 56 with 3 pills 2x/wk. Kinda crazy considering my levels aren't nearly as high as some people get.

Disappointing to say the least. But, at the same time it is nice to have a definitive answer, instead of constantly wondering if it is even possible for me to get pregnant w/o surgery. Now I know it is not.

The good news is, in theory, if the surgery is successful, then my levels should normalize and my cycles should also return. And, if they don't, then at minimum the fertility treatments become a viable option at that point.