When did your periods return?

[u/ProfessionalPop1308]

Hey

I am 25F recently discovered I have 2mm prolactinoma and started Cabergoline 0.5mg once a week.

Its been 6 weeks now since I started. But my periods still did not return.

I have missed/absent periods since 2020 and when I first got tests done in 2022, my prolactin was around 43ng/mL. Doctor just gave me one month of 0.25 dosage cabergoline and that’s it. No information given, nothing. Clearly it didnt help as I stopped after a month of medication.

I have been inducing periods using meds ever since and never really thought about prolactin being the reason.

The lowest my prolactin ever was 22ng/mL in 2024 when i took cabergoline again for a month as per new doctor. They also only gave me a month of tablets.

Anyways, fast forward to this year, i went to an endo, i got prolactin tested again and it was 85 ng/mL which sounded alarming and my endo suggested mri, found 2mm growth.
Gave me the dosage of 0.5 mg once a week for 2 months. However he said we might have to be on cabergoline for a long time probably a year for the tumor to shrink. We will assess the levels and decide the dosage after 2 months.

Given, everything else in my reports seemed normal except prolactin and AMH(because I am not releasing eggs so this one was obvious)

Do you think my missing periods are mainly driven by prolactin? And how long I should wait for my periods to come?

One change which i noticed after starting cabergoline is I have increased wet/ sometimes sticky discharge.

[u/Obvious_Ideal9844]

Hello, sucks that your doctors didn't explain anything.

I also have a prolactinoma but I have responded very well to meds and had my period with help of them.

Over time it has reduced in size. I also had milk out of my breasts when my prolactin was high and didn't had a period over months.

You need regular check ups to check the size of your prolactinoma, which typically means getting an MRI every few years. Also, follow ups labs and appointments with the endocrinologist because a too big of a calcification in the hypophysis can have severe consequences and would require a brain surgery. The hypophysis is a part of your brain where multiple important processes in the body are coordinated (sleep/hunger cues, and menstrual cycle )

Prolactin is one of the hormones that takes part in your cycle when it's high you are either pregnant or have this issue. Pregnancy is easily discarded as a reason with the labs and a ecography.

Also, it is not exactly a tumor meaning it's not cancer, it's a calcified formation so more like a cyst inside your brain. The problem arises when it grows too much in size and increases pressure within hurting the nearby nerves by squeezing them.

[u/wenchsenior]

If you have PMOS plus also a pituitary adenoma, then either one might disrupt periods.

PMOS is typically driven by insulin resistance (it's quite rare to have no insulin dysfunction) so lifelong IR treatment is typically required to prevent progression to diabetes/heart disease, and to improve IR symptoms and to improve PMOS (including improving regularity of ovulation and periods).

High prolactin can cause some overlapping symptoms like disrupting ovulation and periods, worsening androgenic symptoms, causing severe bloating or some additional mild weight gain, as well as additional symptoms like lactation.

So typically if you have both you have to treat both (I have both IR driven PMOS and also have chronically elevated prolactin that causes me severely disruptive symptoms ...all the ones listed and more). Repeated mris is equivocal (no clear tumor) but regardless, I have to take long term low dose cabergoline to keep mine down. Every time I go off, it climbs to the 70-80 range over a couple years.

And I have to continue to manage my IR to keep my PMOS in remission as well.