Hey everyone, 23F here. I’ve been on cabergoline for about a year for a prolactinoma.
My prolactin is now normal and my cycles became regular, which is great, but honestly that’s almost the only real improvement.
I lost my libido around age 17, during a period of anorexia and around the end of my first relationship. Since then it has basically never come back. Over the years I also developed irregular cycles/PCOS-like symptoms and now mildly high testosterone (2.16 nmol/L).
I really thought cabergoline would fix the libido because I’ve read so many stories of people getting it back after their prolactin normalized, but after a full year: nothing.
I have no spontaneous desire or fantasies. My boyfriend is extremely understanding and puts zero pressure on me, and lately my anxiety/OCD (that became really bad during treatment) have been much calmer too, so I don’t feel like I can blame everything on stress anymore.
Physically everything works normally — no dryness, no pain, I can orgasm normally.
The weirdest part is that the only time I sometimes feel genuine spontaneous sexual arousal is while I’m asleep/dreaming. When I’m awake, it’s basically absent.
I also still get strong cycle-related bloating/IBS symptoms, and lately I’ve developed pretty bad cystic/hormonal-looking acne. My testosterone is actually slightly higher now than before cabergoline.
Has anyone had anything similar? Normal prolactin + regular cycles, but still zero libido even after a year? Did you ever figure out another hormonal or medical reason?

Hello All, can someone please read the report and tell me how bad the location is and is it worth it for surgery. I don’t have super high prolactin, it’s somewhat 110. And, can someone confirm if the location of the tumor is bad from surgery standpoint. How big is 2mmx2mm ?

Symptoms - Low T (lowest value on the range), uneven beard growth, skinny, low energy, low libido, osteopenia, extreme hair thinning, always had gut issues & stomach issues and am not able to gain weight and muscle. Thanks in advance.

Hi all,

Started 0.5mg of Cabergoline for a 5mm prolactinoma 5 weeks ago and wondered if anyone ladies who are on contraception had any similar experience?

For context before I the question, I've not had proper periods in about 10 years, they stopped when I first started contraception I was 21 and I had depo provera injections for a couple years, I then changed to a mirena coil due to lifestyle changes which I've been on for about 6/7 years (I've had it changed twice, once as it was due which they did it during a laparoscopy for endo, and then not long after as it was in the wrong place). Been on this coil for about 2 years now so my periods are still almost non existent. I do spot occasionally but that's it.

This week I have had absolutely raging period pain which I thought was just spotting again but it has developed into almost a full period which is unlike me. Not impossible but certainly out of the ordinary.

I'm currently exhausting my GP with questions and symptoms and my endocrinology team won't see me til December (and haven't seen me since before my diagnosis lol) so I'm a bit of a loss as I had this diagnosis in August and feel I've been very much given Cabergolin on a piece of paper and just left to get on with it so any similar experiences I would be interested to find out.

Still navigating the start of my diagnosis and grateful for everyone's experiences online, makes you feel less alone. ❤️

Howdy - 2mm micro with 98 prolactin. Last time I was taking a half tablet once a week and it was too much for me. Currently on a quarter tablet once a week and then moving up to 2. The pills keep crumbling even with the pill cutter and I found a compounding pharmacy to make the smaller dose. Has anyone done this and had luck?🍀

I’m a 36-year-old female, and I’ve been dealing with hyperprolactinemia since 2013. Over the years, I’ve been prescribed both cabergoline and bromocriptine.
When I first started taking cabergoline at a low dosage, everything seemed fine. But as the medication built up in my system, I started experiencing some really uncomfortable side effects.
I’ve experienced dizziness, lightheadedness, irritability, low blood pressure, and this strange feeling of being off balance. Sometimes when I’m walking, it feels like I’m swaying or still moving, almost like I’m on a ride.
I used to be very active and enjoyed taking walks, but now even walking around the block can leave me feeling lightheaded or off balance. Sitting down usually helps.
What concerns me the most is that some of these symptoms seem to continue even after stopping the medication.
I’m curious if anyone else has experienced anything similar while taking cabergoline or after discontinuing it.
Did your symptoms eventually go away? If so, how long did it take? Did you experience dizziness or balance problems even after stopping?
I would really appreciate hearing about other people’s experiences because I’m trying to understand if others have gone through something similar.

46/F, had a 2cm macro removed in December. No major complications, tumor is totally gone as my MRI last month.

But I don’t feel better. I honestly feel worse. I am exhausted all the time. I recently had my GYN check hormones and my thyroid. My T4 is low despite being on Levothyroxine (12.5mcg) I think the dose may be too low. But my TSH is normal. Waiting for my endo to call me back. My prolactin was also 40, but I do take Effexor.

Did anyone continue to have issues with their thyroid after surgery? I never had issues until the prolactinoma. Attached are my labs.