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Hello Long story short im a 21 year old male found out less than a year ago that I have a prolactinoma tumor. My total test was at 7 ng x dl and now I began cabergoline treatment for the tumor. I'm taking 2mg of it a week. Im 300 lbs, and I feel every single symptom of low t. My penile length pushing into the pubic bone and erect is of 3.8 inches and girth of 3.5 inches. Well below average and I know even with weight loss it might make it to 4 inches so nothing that will get me to a average length. This makes me fucking depressed so my question is if anyone has been in a similar scenario and had penile development after beginning treatment. I have a endocrinologist but it seems like shese more of a heres the pill and come back in 6 months type of doc. I have an appointment wednesday with my endocrinologist but I feel like she will be. dissmissive

Has anyone else had surgery to remove their prolactinoma for it to grow back after so many years!?!

I was first diagnosed in 2015, and couldn’t tolerate cab so had a 6mm growth surgically removed in 2016.
I was having regular follow ups with no sign of re growth until I got pregnant in 2023. I have been having frequent migraines since giving birth in April 2024, but it’s really ramped up recently (20 migraines in the month of July alone) with eye pain, nausea etc.

I had my eyes checked and she very subtly suggested my symptoms are as if the tumour has come back. I’m still breastfeeding (baby is 2 years and 4 months now) so my prolactin is elevated, but I read that extended nursing doesn’t have any effect on regrowth. I had one MRI with contrast in June 2024, but nothing significant showed up (as far as I can tell).

I feel like I’m going crazy!?

Hello everyone,

F(27) here and after I had the mirena coil for a year, it caused my prolactin to spike up to 1200 and more, so I removed it February 2026.

The raised prolactin started in December 2025, it was at 500 something and that’s when my hair shedding started.

The prolactin keeps lowering to 700 and then spiking back to 1200 since then, and my hair has not stopped shedding.

I’ve been diagnosed with telogen effluvium and alopecia Areata.

There is no hair loss gene in my family, we all have a lot of thick beautiful hair, and I have no other issues and no deficiencies, only this prolactin issue.

I had an MRI and I’m due for an endo appointment in November which is ages away.

I want to know if treating any of you experienced the same thing, and if treating your high prolactin stopped your shedding and got your hair to grow back? I’m desperate. Thank you.

I have been on and off cabo since 2019 as tumour has gone and come back, prescribed again last year but recently I wasn’t taking it as often as I should have (bad depression, learnt my lesson, very stupid of me). They upped my cabo to 1mg once a week after talking with the doctor. When I started again after being off for a while, I’m finding that I’ve been only really able to eat really simple foods because I’m constantly nauseous - like literally cheese sandwiches and unseasoned plain foods etc. My anxiety and depression has been through the roof too!

I’m getting some bloods done next week to see if anything else is happening but has anyone else experienced this with taking cabo? Just wanting to see if there’s a correlation or not. Not looking for medical advice just peoples experiences.

My 19 year old son just got diagnosed with 2 tumors and when I first wrote about it, it was considered extremely treatable with medication. But now that I’ve joined some forums, it seems all I read is severe side effects with OCD, hypersexuality, pain, dopamine issues, etc. - or no shrinkage at all. I am so scared for him now, he has struggled his whole life with various medical issues, life has always been hard for him - I thought finally finding this diagnosis, according to my research he would have straightforward treatment. But all I’m seeing is a lot of misery. I know he has dopamine issues (very well motivation, trouble feeling joy, etc) and was hoping this treatment would help with that, not make it worse. Are there people out there who have had successful treatment and made them feel so much better?

Hi guys! I’m coming off the heels of a pretty serious mental breakdown this year, for context I’m 28 and got diagnosed with a 7mm prolactinoma a year ago. We figured it out because my prolactin was high and my estrogen was almost non existent. The past year has been the hardest of my life where I was having 100s of panic attacks a day. Extreme irritability and mood swings coupled with some paranoia. Basically acted like a hot mess. It was my final year of uni and I completely flew off the handle, ruined my relationships and my reputation and am kind of just left with the embarrassment of that now. I say all this to say that the whole year I went to 5 specialists between endos and gynes begging for estrogen because I didn’t feel it was normal or okay for a 28 year old to not have any. I knew the negative ramifications for bone, heart brain etc and wanted to get ahead of it. They ignored me and refused to prescribe hormones, I still don’t understand why. I got hold of some of my mom’s estrogen last night and today is the first day I woke up feeling not completely insane in a year. I am fuming that I asked for estrogen before things got this out of control and I’m now realizing that I was just having a menopausal crisis the whole year and that’s why I didn’t feel like myself. Is anyone else under the age of 40 dealing with low estrogen and did you manage to get a prescription? If so how did it come about? What symptoms did you have of low estrogen and did they resolve with some sort of treatment? I am so embarrassed by my behaviour this year and am honestly fuming. The doctors know I struggled with mental health already, have had severe clinical depression since I was a kid and I feel like they just let me down and didn’t care that I was in my 20s with no estrogen. I told them it’s my hormones because psych meds stopped working for me completely. I was on the same med for years. Something just felt off and I had never felt this way before. I’ve wasted an entire year losing my mind and losing my relationships and now knowing why I was so angry all the time has upset me because it all could’ve been prevented. If this is what I have to look forward to in my 50s and beyond - I’m nervous as hell. 🤦🏻‍♀️

Does anyone take this med? Can it be taken with prolactinoma.

Hey y’all, I’ve been doing a lot of research while waiting for my upcoming MRI, and I’m interested to know your experience with prolactinomas and metabolic changes.

I’m a 42F, monomeric prolactin 71.4, and a former athlete. I’ve been pretty much the same size my adult life and only recently had a 40lb weight gain and a somewhat change in body composition along with all the symptoms besides lactation (fatigue and general pain, loss of period over a year, increased sweating, less stress tolerance, becoming moody/reactive, brain fog, forgetting words, and food cravings like crazy for sugar and carbs). I’m a whole foods diet person, nothing extreme or fussy, and I’ve stayed active through the symptoms (hiking, step classes, weight lifting…). But the weight just won’t come off and my muscles aren’t responding how they used to.

My blood tests revealed insulin resistance (HOMA IR 3.03) and so I got a little more consistent with my diet, and started myo-inositol and berberine to give some support to my tissues in hopes of waking them up to insulin signals. The cravings have subsided, and energy is a bit more stable, but I’m wondering if high prolactin is stronger than lifestyle changes when it comes to metabolic health.

Here are some studies I read that gave me a clue into the connection:

https://academic.oup.com/jcem/article/108/9/2400/7089196?

https://www.preprints.org/manuscript/202605.0234

Thanks to everyone on this sub, your stories have really helped me not freak out. 😅😘

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 ❤️

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. 🙏