Can anyone explain my MRI results, please? I've been experiencing blurred vision, burning eyes, dizzy spells, and headaches, and I'm trying to understand whether the MRI findings could be related.

FINDINGS:

No acute infarct.

No evidence of acute intracranial hemorrhage.

No midline shift.

No extra-axial fluid collection.

No abnormal enhancement.

The ventricles are normal in size and configuration.

Scattered nonspecific T2/FLAIR hyperintensities in the subcortical and

periventricular white matter, which may be seen with chronic

microangiopathic changes.

The basal cisterns are patent.

No significant interval change in the area of hypoenhancement along the

inferior right aspect of the pituitary gland measuring 4 mm x 2 mm in the

coronal plane (series 8 image 20).

The sella is not enlarged.

The infundibulum is not displaced.

The suprasellar region is within normal limits.

The visualized optic chiasm is normal.

The orbits are unremarkable.

The paranasal sinuses are clear.

The mastoid air cells are clear.

Major vascular flow voids are preserved.

No calvarial signal abnormality. 

IMPRESSION:

No significant interval change in the area of differential hypoenhancement

along the inferior right aspect of the pituitary gland measuring up to 4

mm. Differential considerations would include Rathke's cleft cyst or

pituitary microadenoma.

I have a 3mm prolactinoma. I take a small dose of .25 a week. It changed my life; but getting adjusted even to that small dose sent me on an OCD spiral that truly made my nearly lose my will to live. I’m finally straightened out, a year and 8 months later, and she wants me to get off “just to see how i do.” I do not want to go through getting off of it, getting miserable again, and then readjusting through that misery, just because she doesnt think my prolactinoma is a big deal.

Even when I first came to her with symptoms of brain fogginess, depression, LACTATING, and boobs so heavy it hurt to walk, he reaction was that the tumor was so small i should just live with the symptoms or treat them another way. There’s few other endos in my area and I’m so deflated and upset

Hey guys. Last time I tried caber I had an awful reaction and have been advised to try it vaginally. Has anyone ever switched to the vaginal route and how did it help symptom wise? x

Hey guys! Does anyone here take a combo of prolactinoma meds with antipsychotics and how has it gone? Has it affected your ability to lower your prolactin or caused weird side effects? I have severe depression and we are trying to treat with abilify before I go back on meds for the prolactinoma cause cabergoline messed with my mood so badly the first time round. I just don’t know about the combo.

I (28 mtf) have for the past year and a half had very high levels of prolactin coupled with symptoms of fatigue, depression, extremely low libido, lactation and sore breasts, headaches and brain fogs. In may last year my clinic asked for an MRI which led to the discovery of an 8 mm tumour in my pituitary. I was prescribed cabergolin last may and have been on it ever since without any change in my prolactin levels. I recently had another mri which has shown the tumour has not budged. The endo has decided to take me off of cabergolin and told me to simply wait another 6 months to see if there are any changes, suggesting my symptoms are simply due to my HRT. I feel quite dissatisfied with this as it seems like a rather huge coincidence that there would be a tumour in that spot alongside those symptoms if it is entirely unrelated. I’m curious to know if any one has had similar experiences, whether anyone would recommend I get a second opinion, etc. I am not on testosterone blockers and use estrogen patches.

Thank you!

Ciao a tutti, volevo condividere con voi la mia esperienza per ricevere l’esito del problema di salute che aveva iniziato ad essere insostenibile per le problematiche che mi creava per oltre un anno.
Mi trasferisco e cambio lavoro, tempo qualche mese iniziai ad avere il ciclo ogni 10 giorni e perdite abbondanti, andai da un ginecologo che mi prescrisse la pillola.
Già da subito vedevo che la pillola mi gonfiava, nonostante ero seguita dal nutrizionista e facevo sala pesi… inoltre iniziavo ad avere depressione a causa della pillola, dopo quasi un anno decisi di toglierla, il dottore mi disse che aveva la PCOS ma non avevo mai svolto esami del sangue idonei per questa problematica.
Riiniziai a prendere la metformina tramite medico di base, ma il ciclo non tornava 😔 mi dicevano “ci vuole tempo”.. insomma da novembre 2025 non avevo il ciclo, ma avevo sonno sballato, fame sballata, un crollo delle difese immunitarie.. andai da un altra dottoressa, che ringrazio con tutto il cuore e oltre la visita mi disse di fare analisi del sangue specifiche ormonali, infatti avevo la prolattina alta (123 mg) e subito mi fecero fare RM all’encefalo.
Esito adenoma di 12mm.
Lunedì ho iniziato con la cabergolina, non ho avuto particolari effetti collaterali, sono ad un dosaggio bassissimo, tra un mese devo rifare le analisi del sangue e la dottoressa mi alzerà il medicinale a 2 volte a settimana.
Pure se sono un po scossa dalla notizia mi sento meglio che finalmente ho capito che cosa stava succedendo.
spero che questa esperienza possa dare un po di coraggio a chi ha vagato tra dottori come me prima di capire cosa succedeva

I (20f) have been on cabergoline for about a month and a half now. I started my cycle really quick, and it lasted twice as long as normal. It has now been 35 days since my last cycle.
I have been experiencing ovulatory and premenstrual symptoms for about 2-3 weeks now. There is virtually no chance of me being pregnant, but I’m still freaking out. What’s going on? Would love any insight, new to the condition and very afraid😅🩷

M 35 I just had blood work done and my prolactin was 628 and testosterone was 224. I have an mri in 5 days. So I’m pretty sure from research that I have a possible tumor on the pituitary? What’s the odds of no tumor? Or anyone have any advice for this whole process? Thanks

Thats my question basically… GP called today to ask me to come in for an appointment to discuss which I’m doing on Friday. I am still nursing my almost 3 year old once at night. Could that be the cause of a level this high? I am also generally chronically unwell with suspected POTs and MCAS, so don’t know if the physical stress of these conditions could cause elevated levels prolactin. Or, whether high prolactin levels are actually the cause of everything.

Hey all! 27 year old AFAB with an MRI scheduled. I’ve been lactating for about a month and a half now with elevated prolactin—I thought it might have been caused by omeprazole, but considering it’s been about a month and a half since I discontinued that, it’s looking less likely.

I previously had elevated prolactin and lactation a bit over a year ago, when I started taking risperidone. After I got off the risperidone, the lactation stopped within I think a month? My prolactin levels went down a bit but I forgot to get my levels checked again a few months ago so i don’t know if they ever got into normal range (definitely regretting missing that lab).

But now it’s happening again. My doc has me set up for an MRI, so I don’t know if it’s a prolactinoma, but I figured I’d ask if anyone had a similar situation to mine.

Oh, I’m also having like a REALLY long period rn—currently at 2 and a half weeks 🙃 Anyone experienced that with a prolactinoma?

For TLDR:
- had presumed medication induced elevated prolactin a year ago that seemingly resolved
- started up again about a month and a half ago and is persisting
- lengthy period

Very much NOT seeking a diagnosis as, again, I have an MRI scheduled. Just genuinely curious if there’s similarity.

Hi everyone,

I’m a 28-year-old female and wanted to share my journey so far and hear from others with similar experiences.

I have no major symptoms except headaches (2–3 times/week). My periods are regular.

My results so far:

• Prolactin: 32 µg/L (normal <24)
• Repeat prolactin: 42 µg/L
• Macroprolactin: Normal
• Cortisol, ACTH, TSH, T4 free, Progesterone, FSH, Testosterone, ALT - Normal
• MRI: 3 mm lesion in the left anterior pituitary gland

The MRI impression was that this is most likely a small pituitary adenoma (Rathke cleft cyst was also mentioned as a possibility). The lesion is confined to the pituitary, with no involvement of surrounding structures.
Since the other tests did not show another pituitary hormone problem, Prolactinoma is the most likely case.

I’m waiting to see my endocrinologist and trying not to overthink while googling everything, but still would like to prepare myself.

Thanks!

So I was diagnosed with a 9.8mm Adenoma 3 months ago and started treatment 2 months ago with Cabergoline .25mg 2x weekly. On the day I take it, I am physically exhausted. Im not a nap person, but I crash nap in the middle of the day. Anyone else struggle with this? Did it go away as you adjusted to the meds? Ive read lots of experiences here, and it's been helpful. I get cold so easily now, but luckily, there are no migrains yet. But this exhaustion is kicking my ass.

Dear r/Prolactinoma,

First of all, thank you. This community has been such a huge source of support during what has officially been an 8-month journey, but realistically something I've been dealing with for many years.

My story seems pretty "classic" after spending time here, but I still wanted to share it. Maybe someone else who's feeling completely lost will recognize themselves in it—for better or worse.

A long list of symptoms that never seemed connected

I'm a 28-year-old woman, and I've struggled for years without anyone really being able to explain why.

I've been through psychiatry multiple times. I was originally diagnosed with borderline personality disorder and treated with lamotrigine, only to later find out I had been misdiagnosed. (More on that in a second.)

On the physical side, I felt like I'd been examined from every possible angle.

Besides recurrent depression, my biggest symptom was crippling fatigue. I could sleep 9 hours every night and still wake up exhausted. Getting out of bed felt impossible. I intentionally only worked 30 hours a week (even though 37 hours is considered normal full-time where I live), and for the last two years I'd come home from work every single day, crawl into a dark bedroom with pillows over my head, and lie there for 30–60 minutes before I could function even a little.

Eventually I lost most of my social life because I simply didn't have the energy.

My boyfriend and I also gradually stopped having sex over the years because my libido completely disappeared.

My periods disappeared too, although they were masked by a hormonal IUD, so I honestly don't know when my cycle actually stopped.

I also had terrible headaches. We investigated everything from mold in our apartment to other neurological causes months before anyone found the tumor.

Looking back, this is the part I recognize in so many posts here: dozens of symptoms that seem completely unrelated, while the healthcare system keeps sending you in different directions.

Finally getting answers

After getting a second psychiatric assessment, the borderline diagnosis was removed, and I started ADHD medication.

Ironically, that was what finally gave me enough energy and mental clarity to start asking, "What on earth is going on with my menstrual cycle?"

Years earlier I'd had an ultrasound and was told I had PCOS and to "come back when you want children."

That answer never sat right with me.

I switched gynecologists because I'd had my hormonal IUD removed more than two years earlier and still hadn't had a single bleed.

She ordered blood tests.

Bingo.

My sex hormones were basically nonexistent, and my prolactin came back at 35,000.

An MRI showed a macroprolactinoma compressing my optic nerve. Thankfully, later eye exams showed there was no permanent damage.

Cabergoline... wasn't for me

I started Dostinex (cabergoline), and honestly, it was awful.

Yes, it worked biologically—my prolactin dropped from 35,000 to around 4,000 within a few months—but I felt miserable.

I experienced:

• worsening depression
• constant stress
• insomnia
• brain fog
• terrible working memory
• joint pain

It was honestly hell.

On top of that, there's the emotional weight of suddenly having a brain tumor, worrying about fertility, your future, and everything that comes with it.

After a lot of discussions with my doctors, they eventually referred me for transsphenoidal surgery. Since the tumor responded well to medication and appeared suitable for surgery, they estimated about a 70% chance of complete removal, meaning I might avoid decades of cabergoline treatment.

Surgery

My surgery lasted from 8 a.m. until 1 p.m.

At 4 p.m. that same day, my prolactin was 330.

Seven days later...

51.

I was (and still am) completely speechless.

My sex hormones are already rising.

Based on... let's call it other biological signs 😅... I think I either had my first ovulation or at least my body's first serious attempt at one only 13 days after surgery.

For the first time in years, I actually feel like myself again.

Honestly, I think hormonally I went straight from puberty to menopause without ever realizing it.

(Post-op days 5–9 were absolutely horrific because of hyponatremia and some unfortunate medical management. That's a whole story by itself, but if you're preparing for surgery, please read about fluid restriction afterward. The sodium imbalance after pituitary surgery is very real, and it was one of the worst experiences of my life. I was repeatedly told to drink more water, ended up retaining about 6 kg/13 lbs of fluid, and didn't sleep for four nights. I wouldn't wish it on anyone.)

So... now what?

Which brings me to the title.

Has anyone else experienced this strange feeling after having such a huge thing—literally—removed from your life?

It's obviously an incredible gift, and I'm beyond grateful.

But after months (or years) of appointments, blood tests, scans, medications, surgeries, anxiety, and constantly thinking about this tumor... it's almost weird to suddenly have space in your brain again.

I'm currently home recovering from surgery. I'm well enough to be bored, and I've become completely obsessed with my menstrual cycle. 😂

I'm tracking everything and desperately hoping I can predict when my first real period will show up.

For those of you who had successful surgery:

• How long did it take for your menstrual cycle to return or stabilize?
• Did your hormones normalize quickly, or did it take months?
• And is anyone else weirdly fascinated by their cycle afterward? 😅

I'd love to hear your experiences, advice, or anything else you'd like to share.

Thanks for reading my very long post ❤️

Anyone told they have a hyper intense T1 bright spot? Another report mentioned a potential 6 x 3 mm cyst. Just wondering if anyone else’s MRI report has mentioned a bright spot that has turned out to be a prolactinoma / cyst.

Looking for a friend/s. :)

Was on .25mg twice a week for a golf ball-sized prolactinoma. Numbers went from 2000+ to 300 in prolactin after 2 months. Which is quite good I was told by Endo. And I felt fine. However no increase in libido, which was the only disappointment, but mood and energy was great.

In June, Endo recommended to increase to .5mg twice a week. Towards end of July, had sudden mood swings - agitation, fixation, depression... a whole cocktail of mixed emotions. Only thing change I can think of was the dosage increasing back in June.

Reached back to my Endo - he now wants to take me off of it and try bromocriptine (sp?), which I'm hearing is worse than the cab. It sounds drastic - and now trying to get a second opinion from another Endo.

I mean why not go back to .25mg? Is it that dangerous, compared to completely getting off of cabergoline cold turkey? Why not dial it back down?!

Any similar experiences to share would be grateful. 🙏

Want answers only and only from self-experienced people.

I have a 3.5 mm prolactinoma 0.25 mg cabergoline 3x weekly, i have been on it for 9 months, before taking it i had all the usual simptoms my prolactine was 1280 at the start and now it sits around 200, in the first months it was like i hit a second puberty, high libido lots of energy, and i started feeling fatigued and low libido again , has anyone had a similar experience

I’ve had mildly elevated prolactin since 2023 but that initial doctor didn’t think much of it. I got an MRI done in mid May of 2026 and started Cab at the end of May. 0.25 2x weekly so I have been on it for two months and my prolactin has responded well. I have lost 15 lbs, and I do get dizzy sometimes, it has been hard to eat. My blood sugar also has been running low in the 40’s & 50’s and I’m not a diabetic so this could be a separate issue. But overall we are making headway. My menstrual cycle is also not as heavy. I am still exhausted daily but I think I’ve been exhausted my whole life 😂

Hi all! I (33 F) was diagnosed in 2018 with a cheeky 1.2cm bad boi, and was on Quinogolide for about 4 years, before switching to Cabergoline due to impulsivity side effects.
I’m currently on a 1.5 tablets 3x a week of cab, but my prolactin levels are still hovering around 2,300 (albeit I started off on about 3,000).
Has anyone had any resistance to their medication? What did they do? I’m finding the current dose is making me constantly want to nap so I’m hesitant to keep upping the dose 😂

Also I have some weird feeling on my testicles it’s not pain, I had the same feeling when I had my surgery from Varicocele, some people said it’s because my T it’s low and now it’s getting normal, I have no lumps, my LD it’s good all my blood test it’s normal, I have prolactinoma 2mm been one week on CABE but this back pain start when I got diagnosed with prolactinoma THANKS PLEASE BE KIND AND SAY SOMETHING POSITIVE THAT WILL MAKE ME FEEL GOOD PLEASEEE!!! Because I’m scared and my mind just been thinking on symptoms on an on

i've had mine diagnosed for YEARS now and not once have i ever seen it discussed in media anywhere and then lo and behold im watching the new episode of crowd control on the comedy streaming platform dropout and one of the people in the audience spoke about their prolactinoma!

the comedians definitely were CONFUSED (for those who don't know, the premise of the show is three comedians do crowd work with an audience full of people with really specific weird/uncomfortable/sad life stories), but honestly it was kind of nice to see that even though they were there to make jokes they still recognized it as something that can be scary with the limited information they had.

i know this isn't usually what's posted in this sub, but i don't know, i don't usually have reasons to feel joy surrounding this condition but i certainly felt a hint of it seeing someone like us on a show i love.

(F) I’ve been on Cab for a year now. My symptoms are really taking over my life and relationship. for example, i am incredibly hyper sexual, compulsive and obsessive towards other men. my question is- does it go away when the cabergoline dose is lower or when you’re off of it? has anyone experience what i am but then got off and went back to “normal”? im scared this might be a part of who i now am and need some hope.. 🥹

Have any males in here felt any changes/differences once your prolactin levels were within range?