What does my future look like with a prolactinoma?

[KristenM08]

31 y/o female, I've been ttc for 3 years now with no luck, been through multiple rounds of blood tests, other tests, and some medication, still nothing.  Started seeing an Reproductive Endocrinologist about two months ago, and they thing they've discovered the problem. High prolactin levels as a result of a microadenoma, or prolactinoma inside my pituitary. MRI this weekend to confirm the little sucker and see how big he is. (Based on reading the symptoms, I have all but one of the usual ones, so I'm pretty certain it's there. And pretty frustrated no one told me this was a possibility before...)

My doctor's suggestion has just been: confirm that it's there, start meds and then BOOM, Baby. From what I've ready it doesn't seem to be that easy. So I have a lot of questions for those that have experience with prolactinomas.

1. What are the side effects you experienced, and which medication did you take?
2. Did you have surgery, and if so, what was the reason for going that route?
3. If you were TTC, how long after starting medication did it take to get pregnant?
4. How often do you get rechecked, either blood levels or MRIs?

(If it makes any difference, I've already had brain surgery once, for Chiari Malformation. My skull is misshapen and the bottom of my brain stuck out the bottom of my skull and caused all sorts of problems, chief of which were dizziness and headaches. I'm obviously very nervous to willing take anything that could cause my dizziness and headaches.)

[rumpled]

Hello. Welcome to a club no one wants to join and it sounds like you have other health issues so I know the feeling... More, really?

Questions...
1. In the beginning when your body is adjusting, it is worse. More fatigue etc. if you read up the list if daunting, but those doses are generally far higher. You will be on a pretty low dose usually and take it a few days a week. In general, food, night dosing and working with the doc to taper up can help. In the USA only 2 meds are approved, and one is newer and it is just a matter of experimentation to see which one works with the least side effects.

2. I had surgery. I had another tumor type with my prolactinoma. Only if your tumor does not respond as all to meds (5-10% don't ) or it gets super large and gets near bad things like optic nerves or other vital things so they want to debulk maybe. I have had 14 surgeries, that was was rather easy.

3. I was not ttc so sorry can't tell you... Was rendered no kids buy I had a lot more issues.

4. In the beginning, MRI's annually, blood tests quarterly. I am 10 years out, so my MRI is now 2 years and blood tests 4-6 months.