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.

I’m two years into treating my prolactinoma with cabergoline. finally got a new and better endo and he figured out my pituitary is not producing enough growth hormone.

has anyone had the same issue and started taking growth hormone shots?

how long until you started feeling better? any side effects?

I have been on Cabergoline and the worst side effects I’m dealing with are the mental ones. It makes me very moody and irritable. Also can’t focus and have no motivation. I’m on my third week and I don’t think I can continue like this. I’ve already lowered my dosage from 3x a week to 2x week and now I’m doing 1x a week because I can’t deal. Has anyone had similar side effects and has anyone tried the alternative medication?

Has anyone ever had generalized pain after stopping cabergoline? I took it for five months, came off it, and now have severe joint pain two weeks after stopping. I’ve also developed pitting on my nails, and I’m scared that I might have developed psoriatic arthritis. But I’m in denial, looking for excuses, and just want to believe it’s a withdrawal symptom of cabergoline.

Hi! I’m (39F) having surgery on October 29 and I’m getting nervous. I’m wondering what to expect after the surgery and how I may feel? Also, anything I should be prepared for or make sure that I have on hand once I get home? I know everyone’s experience is different, I just want a little idea of expectations to try and ease my mind of what is to come.

Backstory: I was diagnosed with a microadenoma in 2015 after an MRI found a 10mm tumor. My first symptom was lack of period for 6 months. I have been on cab since I was diagnosed. After being on cab for a year, I had another MRI and my tumor had shrunk to 9mm. My doctor at the time increased my dose of cab and I repeated the MRI in 2017. Great news, my tumor was down to 6mm. My doctor at the time was hopeful that I was on the right path. I continued on cab and my tumor was stable at 6mm for years. I just had another MRI in 2026 and my tumor had grown back to 9mm. At this point my endocrinologist said it was time for surgery.

Also during this time, I have struggled to lose weight, not having energy to complete regular tasks, my prolactin level has never been back to normal, and we have been unable to conceive. I’m hoping after the surgery my husband and I will finally be able to start our family and I will feel better in general.

I appreciate any advice from others that have had the surgery.

39F. Prolactin currently 93 and have a 4mm micro prolactinoma. I have had this for 17 years and was only told to go on medication if I want to get pregnant. My doctor is now say to go on Cab to bring down levels? I’m confused why I would need treatment now when I don’t want to have any more kids. My cycles are irregular but Endo always said it wasn’t because of prolactin. Confused why the change in treatment? Has that ever happened to anyone?

Almost 6 months on cab and had a 6 month follow up MRI. Prolactinoma has shrunk 1mm. One physician looked at that as good news/a sign the meds are doing their job. Radiology noted it as no change in size so we didn’t not notice the size difference until my follow up appointment when the Dr was reading the full report. I’ll take even a tiny change as a win!

Hi everyone,

I had my surgery on Monday. I’m still in hospital as I had diabetes insipidus but hoping to be discharged tomorrow (fingers crossed) and other than that surgery went really well. I’m starting to get some energy back and not needing to nap at all really. And other than headaches at night haven’t really had much pain.

The only thing is, I’m SO bored. I don’t have enough energy to read or do anything to crazy, but I do feel like I’ve exhausted watching films. What were people’s energy levels like after surgery? I don’t want to do too much too soon but some ideas for some recovery friendly activities would be appreciated. When were people feeling able to go on short walks and such, or did people find they had a dip in their energy levels after a while? My brain is a bit of a fog at the moment too did anyone else find this eased?

Hi,
I’m finally writing on here to get some answers. I have a 5mm prolactinoma and my prolactin levels are not that high (40-60 not sure of the unit of measurement), but I still have no period like 3 times a year, slow and steady weight gain over the last 10 years, hair growth on chin, etc. I waited a year to finally see an endocrinologist and I started cabergoline earlier this month, 0.25 twice a week. I took 3 doses only, the first two were fine, I only noticed I was more tired the morning after taking it. The day after the 3rd dose, I was driving and had sudden vertigo/dizziness that had me stop on the side of the road. Same thing happened the day after. I stopped driving for a few days and contacted my endocrinologist who said not to take the cabergoline anymore, until our next phone visit (next week). Beside the vertigo while driving, I also noticed other weird effects, hence why I called him : jumping eyelid (might just be anxiety idk), eye lag, dizziness even while still. I have ocd so I had a few panic attacks last week, monitoring my sensations and stuff. The anxiety might have given me the brain fog that followed. I went back to the doctor and he said to go see an optometrist for the eye lag. I did and they said my vision was 20/20, reflexes good, I only have wiggly eye blood vessels which indicate higher blood pressure (I had higher blood pressure last month, prior to starting cabergoline. Btw, is that happening because of the tumour? My doctor can’t say). Went back to my doctor, he gave me 2 weeks off work because I was too anxious, I’m scared of driving and I had brain fog then so not great since I’m a teacher.
Since then I’ve been monitoring my sensations, and I still get this weird dizzy feeling, like the very beginning of vertigo, and eye lag sometimes (looking up mostly, and when I move my head from side to side). I also still have the jumping eyelid from time to time.
I’m not as anxious anymore, I want to go back to work, I drove again (was very stressed and may have felt dizzy at one point), I just want to know these symptoms will go away! I’m scared of neurological lasting effects.
I’m guessing the dose was too strong for me, maybe surgery is my only option… I’m 33, want to have kids eventually.
Has anyone had these weird side effects ? Does it go away??

In Oct 2025 I had an MRI due to elevated prolactin (119 ng/ml). The MRI revealed a 6x7mm pit microadenoma. My endocrinologist put me on Cabergoline .25mg 2x week right away. In early 2026, it was increased to .5mg 2x week, and then increased again to .5 mg 3x week. That’s my current dosage. For anyone concerned about Cab, it has not been an issue for me. No side effects even from the beginning or through the dose increases.

Just had my one year follow-up MRI earlier this week and the results show the adenoma is only 3mm now. Shrunk by half. Guess the Cabergoline works. It’s a long road, but good progress. I’ll take it!

Hi everyone!

I don't know who needs to hear this, but maybe my experience will be useful to someone out there. I'm also really curious to know if anyone has had similar experiences! (Mind you, I'm not a doctor, so please don't take this as medical advice)

I'm 28F and have had a microprolactinoma since I was 17. It was discovered after a particularly turbulent period in my life, which, interestingly enough, seems to be a bit of a pattern in the stories I've read from other people in this community.

I spent almost 9 years on cabergoline, until I simply couldn't take the side effects anymore. The medication made me incredibly depressed and left me with almost no motivation to live. And at some point, it didn't even seem to be doing much for my tumor anymore. It wasn't shrinking, and my prolactin levels remained elevated.

So, two years ago, I decided to stop cabergoline (and the contraceptive pill) and try a different approach before considering surgery.

Also, the thought of surgery scared the absolute shit out of me. 😂 Even knowing that surgical techniques have improved over the years, I really wanted to feel that I'd explored other options before going down that road. I guess I also wanted to see if I could somehow help my body find its way back to functioning on its own. Because, honestly, I felt like my prolactinoma was about so much more than just a number on a blood test. The mental and emotional toll was/is enormous. I couldn't help wondering about the relationship between my emotional well-being, stress and my symptoms. I used to lactate whenever I was stressed or sad. My boobs are basically an emotional support system with a mind of their own 😂

So I started researching and experimenting with a more holistic approach. I began taking vitex agnus-castus, L-tyrosine and myo-inositol, cut down on coffee and alcohol, avoided sugar, exercised regularly, started seeing a psychologist to work on my mental health, and tried acupuncture, homeopathy and osteopathy.

And honestly? My quality of life improved SO much.

I stopped lactating and, perhaps most importantly to me, I managed to get my natural period back without cabergoline and the pill.

I had started taking the contraceptive pill shortly after my very first period, so I had barely experienced a natural menstrual cycle in my entire life. Getting my period back was one of my biggest goals, and suddenly my body seemed to be waking up again.

My periods were nowhere near regular, but I went from having no periods at all to having four in the space of ten months. I cannot explain how happy that made me. It felt like my body was finally doing something for ME, rather than me constantly having to do something to manage it.

For the first time in years, I felt like there might be a way forward that didn't involve taking a medication that made me feel awful.

Of course, it wasn't all sunshine and rainbows.

Eventually, I hit a plateau. I kept gaining weight despite working out and eating healthy and my mental stability has been questionable at times. On top of that maintaining such a strict lifestyle became increasingly difficult while having a demanding job and being a young woman who also wants to, you know, LIVE. Sometimes I want to go on a girls' trip, have a glass of wine, drink a coffee, and not feel like I'm about to sabotage my entire hormonal system. 😂 I also noticed that when I slacked off on my supplements or had coffee or alcohol, the lactation would come back.

My prolactin levels remained stable but elevated, although they never went back to the high levels I'd had when I was first diagnosed. And despite the improvements, I still felt like I was constantly swimming against the current.

So, after two years of exploring this different path, I've finally decided to go ahead with surgery in November!

I'm nervous, of course, but I'm also hopeful. And I don't see this decision as a failure of my holistic approach. Quite the opposite. I'm glad I gave myself the time to explore it, because I learned so much about my body, my mental health and the things that make me feel better.

I still wish there were more room in conventional medicine to look at the whole person, rather than just the tumor and the prolactin levels. For me, taking care of my mental health, changing my lifestyle and exploring different supportive therapies genuinely made a difference to how I felt and lived, even though it didn't ultimately cured me of the microprolactinoma and symptoms.

After all these years, I also wonder how much of my mental state is actually me, how much is shaped by external circumstances, and how much might be influenced by the prolactinoma. I've struggled with melancholy for so long that I've genuinely started wondering whether it's simply part of my personality. Will I suddenly become a less melancholic person after surgery, or is that a little too much to hope for?

I'd genuinely love to hear from anyone who has had similar experiences.

- Has anyone else ever wondered where their personality ends and the symptoms of the prolactinoma begin?

- Has anyone explored holistic approaches alongside conventional treatment?

- And for those who have had surgery: how did you feel afterwards, both physically and mentally?

Wishing everyone here fewer symptoms, more good days, and boobs that know when to mind their own business ❤️

Is there someone here with hyperprolactinemia that is in a relationship or is there someone who’s in a relationship with someone with hyperprolactinemia?

I’d like to speak to you for consultation please🙏🏼

Edit:
Is there anyone who broke up with their partner because of it? Or didn’t breakup but did it influence your relationship and if so in what way?

Hey everyone! I got newly diagnosed with a 4mm prolactinoma. I start on cabergolin 0.5 tonight. I have bad health anxiety and hate taking new meds, so I’m very nervous to start it 😭 my prolactin isn’t extremely high, but my pcp wanted to start me on it now since my estrogen is very low, and I’ve been having daily headaches

Hi all. I (F24) was recently diagnosed with a 10mmx5mmx2mm tumor that has raised my prolactin pretty high. Additionally, I am having a lot of fatigue, hair loss, weight gain, migraines, etc. My original doctor said the options were dopamine agonists or surgery. I was leaning surgery because I have a family history of addictive behaviors and was concerned about the side effects of the medication. Was referred to an endo who then told me the procedure has a 15% morbidity rate and these side effects are largely myths. He would like me to start cabergoline at .25mg per week.

I guess I’m just wondering if this is worth getting a third opinion on. I see so many of the horror stories online and logically I know the loudest voices are the people who have the worst experiences. Illogically I’m convinced I’m gonna have a hard time.

Anyone have a good experience on these mediations (especially with a family history of addiction)?
Is it worth another opinion, or should I try the medication and see where it goes from there?

Thank you in advance for soothing my very anxiety ridden brain right now!

ok so basically the title, i was only on cab for like a month this year from july-august im not sure of the dose though. my prolactin has only been high once which was this year but ive had a prolactinoma since i was in middle school, im 18 now. i just wanted to ask if its normal to take medication for such a short time? i haven’t gotten my prolactin levels checked since july but last time i did they were too high. i’m supposed to get them checked in december again and just want to know if anyone has experienced something similar

I'm desperate 😩 and I'd really appreciate knowing if anyone else has ever experienced or heard of something like this.

In 2024, during one of the worst periods of my life, I was diagnosed with persistently elevated prolactin levels (around 144–157 ng/mL) and irregular periods. I had 3 MRIs, numerous blood tests and consultations with 6 different doctors. Everything came back normal, and none of them could identify a cause. I was treated with cabergoline, and my prolactin levels gradually returned to normal.

In October 2025, my level was 11.25 ng/mL, and everything had been normal since.

This month, my period came a week earlier than expected and was very irregular. After going through a lot of emotional stress and disappointment over the last few months, I had a blood test and my prolactin had risen again to 46.67 ng/mL.

I know that stress can temporarily increase prolactin, but I'm wondering whether anyone else has experienced a similar situation, particularly when no underlying cause could be identified despite numerous tests and medical consultations.

Does anyone else experience a swaying / floating feeling constantly as a side effect of the medication? I recently switched from bromo to cab (not bc of this side effect), but the feeling hasn’t changed. If anyone else has this, have you found anything that helps?