Hey, I'm a 20M from Melbourne, Australia. 

Context: Recently, a brain MRI showed a 19x11x7mm solid mass on my pituitary gland. Along with low testosterone of 4.3/5.7 nmol/L and elevated prolactin of 18078 mIU/L, it is probably a prolactinoma. I have an appointment with an endocrinologist in 2 weeks to talk about my options and potentially start treatment.

Problem: However, I'm not sure what to discuss at the appointment.
Right now, I want to find out if I need a dopamine agonist (like Cabergoline) or surgery (which my GP and radiologist suggested). Other things I might talk about are possible symptoms I have, like gynecomastia (had it since 16, even when I was almost anorexic), hair thinning, mood swings (though I manage them well), less facial and body hair, and more abdominal fat and a puffy face even though I regularly go to the gym and obsessively count calories.

1. Is there anything else I should talk about?
   I'm thinking about mentioning testosterone, but I'm not sure if I should since my active testosterone levels were in the normal range. Still, they were close to the low side at 4.4 nmol/L within the range of (2.5 - 12.0). 

2. Also, for those treated with Cabergoline, when did you start feeling better?
   I'm especially insecure about my gynecomastia and want that gone ASAP.

Is hunger a symptom of prolactinoma? My tumor is growing, and I have had intense hunger for quite some time now. Wonder if they are correlated…

hi !! i was diagnosed with a 3mm prolactinoma about a year ago and a half ago when i got an mri due to losing my period and getting really bad ovarian cysts, i know not typical but my gynecologist "had a gut feeling." i've been getting mris regularly due to crazy symptoms that come and go that land me in the er regularly, but it's always been a stable 3mm. however, i got an mri at the beginning of this week due to vision loss and migraines and it tripled in size in the span of about 4 months. it had not grown at all in a year and a half, and all the sudden it absolutely jolted up in size. i'm worried because this happened so quickly and my endocrinologist wants to wait another 3 months before a new scan and updated labs, she said my symptoms aren't bad enough to qualify for treatment at this time.

my labs definitely do not match up with the size, when i was first diagnosed my cortisol was extremely high as was my prolactin, however these were both attributed to the stress of being in a very bad relationship in which i lived in constant anxiety for about a year. since leaving my now ex, prolactin is slightly better and cortisol is extremely low. the issue now is that my estrogen absolutely tanked and i had to start hormone replacement, and now my thyroid is also extremely low. my biggest concern is the loss of my peripheral vision which my ophthalmologist thinks is due to the tumor, though my endocrinologist thinks this is just a coincidence and unrelated. endocrinologist also believes the migraines, nausea, insomnia, weight changes, fatigue, and dizziness/passing out is also unrelated. i worry that they are not unrelated and waiting to treat this will only end up with it getting worse that it already is and affecting my ability to keep up with my demanding major at school and my job (i work in healthcare and it is very physically demanding).

i'll also note that i am a university student and go to school about 5-7 hours away from my home, so leaving constantly to go to appointments is not really an option for me, and it would be way easier to know more before i move back into my dorm so i don't find myself having to leave mid-semester. if anyone has dealt with similar or has any insight at all please let me know !!

this is kind of a rant im just lost

ive got my hormone levels tested lately cause my periods have been more irregular than normal (instead of coming every 35 days it’s 17 days) and i got abnormal results of 282mIU/L of prolactin and 4nmol/L of androstenedione. im recovering from disordered restrictive eating so it makes a lot of sense for my hormones to be all over the place, but i learned that the most common cause for elevated prolactin levels is a tumor in the pituitary gland.

i’ve been suffering from migraines with visual aura since i was 12 and never really got any brain imaging for it, the monthly migraine always came after ovulation and i figured it just has to do with my period and i don’t really have much to worry about. but now im learning that i could possibly have a growth pressing on my optic nerve or something, the mere possibility that i have a BRAIN TUMOR is absolutely freaking me out.

i don’t want to go through MRI tests and j don’t wanna deal with the possibility i might have a fucking brain tumor. i hate that idea. i already deal with severe mental health problems such as complex ptsd, last year my mental symptoms got so bad i was hospitalized because it was thought i got a pathological heart condition…. im frustrated. it terrifies me. i know it shouldn’t because if it really is a brain tumor its a really mild case of one and that there are people who suffer from tumors that cause them seizures, loss of function… and i just get blinded every month and irregular periods. i hate it so much, hate being born female and having to deal with those problems :( i cant help but read more and more about the causes my elevated hormone levels could have.. im just freaking out and dont got anyone to talk with about this topic

Hi :) I’m 33 and have an 11-month-old, and I’m wondering whether anyone has had a similar experience with elevated prolactin and how it worked out.

I stopped breastfeeding at 6 months postpartum and still haven’t gotten my period back. This along with headaches, brain fog, zero sex drive, very reactive skin, weight gain (since weaning) and general irritablity/anxiety. I pushed my OB to order labs, and my prolactin came back at 64. My estrogen was also very low, which wasn’t surprising given the lack of a cycle.

I then pushed for a small dose of cabergoline, but it was only two pills rather than an ongoing prescription. On repeat testing, my prolactin had only dropped to 50, and I’m still having a small amount of nipple discharge.

I’ve never had cycle or fertility issues before. My period returned within six weeks of having an IUD removed, and within one cycle after a miscarriage/molar pregnancy in 2024.

Has anyone had prolactin stay elevated like this after weaning? Did you need a longer course of cabergoline, an endocrinology referral, or a pituitary MRI? I’m trying to understand whether my hormones may simply be taking longer to reset or whether I should be pushing for more investigation.

It’s becoming exhausting to keep advocating for myself because my doctor continues to dismiss it as normal within the first year postpartum and suggested acupuncture, which I’m already doing. I’m hoping to start trying for a second baby this fall, so the continued lack of ovulation and a period is starting to really stress me out. Not to mention these symptoms really suck. TIA!!

I was recently diagnosed with two 2 mm pituitary lesions (my doctor thinks one may be a cyst and one may be an adenoma). I have elevated prolactin, but I’m not on any medications yet. I’ve noticed that I get nausea on some mornings, and it seems to happen more often during the week before my period. I’m trying to figure out if it’s related to the pituitary issue, hormonal changes, or something completely unrelated.

Has anyone else with a microadenoma or elevated prolactin experienced this? Did you ever find out what was causing it?

Hi everyone. I’m 29F and just found out I have a 9 mm pituitary tumor (my doctor believes it’s a prolactinoma). My prolactin has been in the 65–78 range, my periods became really irregular, and I’ve had some milky discharge if I express it. I’ve also been dealing with headaches, fatigue, and weight gain that has been incredibly frustrating even though I eat well and work out regularly.
I have my first endocrinology appointment coming up, but my mind has been all over the place since finding out. I know 9 mm is technically still considered a microadenoma, but seeing “9 mm brain tumor” on an MRI report is a lot to process.
For anyone who’s had a prolactinoma around this size:
Did medication shrink it?
How long did it take before you started feeling better?
Did your prolactin and periods go back to normal?
If weight gain was one of your symptoms, did that improve after treatment?
Is there anything you wish you knew before seeing your endocrinologist?
I’ve been trying not to doom-scroll, so I’d really appreciate hearing from people who have actually been through this. Thanks ❤️

I’m a 36F seeking some perspective or shared experiences from anyone who has dealt with a prolactinoma and Cabergoline treatment.
My Background & Timeline:
2024: Diagnosed with a 7mm microprolactinoma and started on Cabergoline. Starting Cab was really rough on my body.
May 2025: Prolactin levels stabilized, so my endocrinologist lowered my dosage.
Late 2025: MRI showed a 75% shrinkage after 15 months of treatment!
Current Plan & Dilemma:
My endocrinologist wants to completely discontinue Cabergoline once I reach the 2-year mark, even if my upcoming MRI shows a small tumor is still present.
I am extremely hesitant to stop. Starting Cabergoline was brutal, and I really want to avoid a "stop-and-start" situation where my prolactin rebounds and I have to go through the onboarding process all over again.
Symptoms I'm Currently Experiencing:
Lately, I’ve been struggling with a cluster of symptoms and can't tell if they are lingering side effects of Cabergoline, low blood pressure issues, or something else entirely:
Tension headaches (starting at the back of my head)
Neck pain
Lightheadedness / dizziness
Low blood pressure (Low BP)
Low mood
Low libido
Questions for the Community:
1. Has anyone been taken off Cabergoline when their MRI still showed a small remaining tumor? Did your prolactin stay normal, or did the tumor grow back?
2. For those with low BP or tension headaches/neck pain: Did these turn out to be Cabergoline side effects for you, or related to something else?
Any experiences, insights, or advice on questions I should ask my endo before making a final decision would be greatly appreciated! Thanks in advance.

Hi all,

I was diagnosed with a small 4mm prolactinoma after having a range of 1000-2000 consistently (in UK terms). I believe I had had this problem for a very long time but it’s only recently that I have been to an endocrinologist who decided to investigate.

The thing is I have struggled with my weight all my life despite not actually having a huge appetite. According to posts I see here and information I found on the internet it points to the fact that having a high prolactin level makes it harder to lose weight.

That being said I have asked two endocrinologists about it and they have both said me that having trouble losing weight previously has nothing to do with high prolactin levels. As it stands the only way I have been able to lose weight is by using Mounjaro but even with that I am losing slowly compared to others my size, so it really makes me wonder.

What are your thoughts and opinions on this? I do realise your thoughts and opinions won’t be medical advice and will be based on your own unique experience but I would just like to get a feel for what people have experienced or think.

Thanks!

My hospital network uses My Chart. It specifically says that it cannot release patient radiology images. I briefly saw my tumor at my first endocrinologist appointment. She brought up the MRI images for me to see since I hadn't seen them yet.

I'm curious if this is my hospital network or if it's because I work for the hospital (though I'm not a patient caregiver) or if this is a normal thing.

It's the most expensive photograph I've ever had taken, I'd like to be able to see it.

Hi everyone,

​I was diagnosed with a 4mm microprolactinoma after finding elevated prolactin levels around 60 ng/mL. I’ve been taking Cabergoline (0.25 mg weekly) from Jan 2026 for about 6 months, and my prolactin levels have now normalized from Feb first week.

​My Journey So Far:

​January Baseline: My initial semen analysis came back as OAT (Oligoasthenoteratozoospermia), with a baseline count of just 3.1 million/mL along with reduced motility and morphology.

​Recent Test: My latest results show my count has tripled up to 9.4 million/mL, showing that my body is responding well to bringing prolactin down.

​Current Regimen: I'm taking CoQ10, Vitamin C, Vitamin E, and daily Tadalafil to support microcirculation and recovery.

​For those who have treated hyperprolactinemia or secondary hypogonadism:

​Fertility Recovery: For those who started with an OAT diagnosis linked to high prolactin, how long after prolactin normalized did your count, motility, and morphology continue to climb?

​Physical Traits: As testosterone levels rebounded post-prolactin, when did you start seeing noticeable gains in muscle mass, body hair, or voice depth/resonance?

​Success Stories: Has anyone with a similar starting OAT profile achieved natural conception after long-term prolactin control?

​Would love to hear your timelines and experiences. Thanks!

i, 28F, have a 2mm microprolactinoma and my major issues from it is an estrogen deficiency. i also have subclinical hypothyroidism so i don't know if that is relevant. does anyone else have this and what are your symptoms? for me i am having hot flashes, cold intolerance, low/no libido, persistent dizziness/vertigo, horrible, horrible brain fog, depression/anxiety, irregular periods…. and a few other weird things that aren’t typically estrogen deficiency related? which is why i’m curious as to what other people have experienced.

Hey guys! I’ve noticed the past year since getting diagnosed and having my prolactin go up that my sense of smell is so strong I can’t tolerate most smells that normal people don’t seem to mind. Did anyone else experience this?

Hi everyone. Brand new on here! I've been to the doctor and have had hormone blood tests and they have found I am high in Prolactin and Progesterone during what should be my ovulation.

I have fairly regular periods but they're incredibly painful and heavy and I get a lot of issues with inflammation and what feel like my connective tissue tightening and aching. Like I'm being turned into stone for around half of the month.

I also have a large cyst, latched onto my skene gland which is located right next to my urethrae. It's around the size of a walnut. I've been referred to Gynecology and Urology as the surgery to remove it would require both departments to be present to perform it.

I went private last year to speed things up but it seems to have just slowed everything down as I'm now dropped to the bottom of the urology list despite being told I need surgery to remove it and could be catheterised for the rest of my life if I get it.

I've also been referred on to get an ultrasound to check for more cysts. I got an MRI last year but it was only localised to my lower pelvis, since that's where the cyst was.

Has anyone got any advice as I have a lot of the symptoms of PCOS and Endometriosis and I feel like if they're growing on the outside of my body they must be on the inside too?

I've just started cabergolie for a prolactinoma. I work out a lot and wondering if I might notice better gains in the gym, due to testosterone not being suppressed as much from high prolactin. I'm looking for the silver lining here.

It would be great to get an anabolic boost as well as the regular benefits.

Any others have positive results?

like how they treat you? after diagnosed by this cherry in your head

Hi there! I have a 7mm prolactinoma and have just started with the worst stomach issues we can’t seem to get rid of. I’m not on any meds at the moment that could be causing it. I’m having terrible gerd, bloating and pain and they can’t seem to find a cause. Could it be the prolactin? Did anyone have stomach issues as a symptom? It almost seems like I can’t tolerate food anymore as well. It kind of just sits in the stomach.

Help. Can anyone relate:(29yo Female)

In august 2023 I noticed I had gained a lot of weight and lost vision in my left eye and soon discovered it was due to a prolactinoma. I started taking cabergoline that same month (august 2023) and it immediately worked, however I soon developed really bad side effects. I was extremely fatigued, severe joint pain, mood swings like no other, impulsiveness, and severe depression. I thought it was from my hormones being disrupted, so I dealt with it until finally I saw via reddit that it was the cabergoline. I came off it immediately, and my prolactin levels shot back up to 350. I tried bromo but it didn't move the needle. I started back on cab at a much lower dose, and it was effective with little to no side effects. I got my prolactin down to 24, still having no period, still not losing any weight, hormones still very disrupted. (I took a DUTCH test that showed essentially 0 sex hormones). I just had my prolactin levels checked (after being in a good spot for a year),however, and prolactin is slowly rising. I will adjust my dose, but I just need someone who can relate or give any sort of any advice or insight.

I am on a birth control pill because I had 0 hormones and felt horrible and was heading abroad. I also thought it would help my weight and mood and energy while traveling and thought it would be important for bone health etc, but it has done nothing. In fact, I feel as though my body fat percentage has gone up. I do have a period now, but I know it is only due to synthetic hormones. My digestion is also a nightmare- chronic, severe bloating (this has been the case since summer of 2024) despite numerous gut healing protocols and supplement interventions. (Oh and I went to the mayo clinic and Mass general both of which said the tumor is essentially inoperable unless I am willing ot permanently damage my pituitary and other vital structures.) There is so much I've done and it feels like too much to write, but from what I have said, can anyone relate? Is the cabergoline causing my gut issues and inability to lose weight? Should I ditch the birth control? I'm so frustrated and feel so stuck and I don't recognize myself anymore and it feels horrible. If you've read this whole thing, thanks for being here and listening.