r/Prolactinoma

I started cab around a month ago, my breast finally stopped leaking milk but my weight is still kind of high despite making changes to my diet. when did you guys start seeing a change in your weight?

I just got my prescription from pharmacy and I was curious of the price of Dostinex in different countries.

I paid for 12 pills ( I take one/week) about 11 euros. I have through my insurance 50% discount. I'm from Romania.

Sorry for the long post in advance! I (28F) got diagnosed with a 4mm microprolactinoma in 2022 after a history of very irregular painful periods, severe depression, headaches, and lactation (never been pregnant so that was really jarring! I used to think it was just sweat lol). PCP prescribed and MRI and bloodwork and found I had elevated prolactin levels and a 4mm mass on my pituitary. Got referred to an endo and got regular bloodwork and yearly MRIs. My endo told me I don’t need to do anything about it besides just keep an eye on it and go see a therapist. He also put me on birth control to regulate my periods and help with the pms symptoms. I was a heavy weed smoker for 4 years prior to this and had to stop since I developed health anxiety and getting high would give me panic attacks. Since my diagnosis I got COVID twice, and almost a year after my diagnosis (and soon after getting COVID a second time) I started getting pretty bad migraines.

I’ve had severe depression since I was 13, and all of a sudden about a year after my diagnosis I was….not depressed? Borderline happy? It was the strangest feeling ever to not be depressed and funny enough it felt wrong; I’ve NEVER felt emotionally normal in my entire life! Like I used to be CRAZY depressed, and would get suicidal often and bedridden for days. Failed several college classes just because I couldn’t get out of bed. Tried several different SSRIs and they only gave me side effects. Got involuntarily placed in a psych hold at one point. So, not being depressed was weird. Got another MRI and the tumor wasn’t there anymore! My endo was kind of a dick and said it doesn’t make sense my tumor would just disappear on its own and I might have not had one to begin with and the MRI might have just been spotty, but that makes NO sense to me whatsoever. I had symptoms! My depression disappeared despite being under more stress than I’ve ever been in my life!

Fast forward three years later, I still have had no depression or anything close to it (besides health anxiety) despite having insane amounts of stress and pressure. Also every bloodwork I’ve had since has been normal! Has this ever happened to anybody here? Tumor just disappeared? The only changes that happened to me were stopping weed, getting COVID, and starting birth control. I know it’s rare, but lately I’ve been thinking about it so much during periods of self reflection. I’m still so confused (grateful as hell but confused) how I haven’t had depression in years despite having it most of my life! I haven’t been to a therapist since I got put in a psych hold in 2019. It just doesn’t make sense! Looking for somebody to relate to because I feel gaslit by my endo.

anyone know if it’s possible to take SSRIs and cabergoline? I take a very low dose of cab but could use some help with my depression and OCD symptoms so am considering adding an SSRI. would appreciate any encouraging replies :) thank you!

This is more of a vent than anything. Not really looking for advice.

I've been on Cabergoline for 3 years this time around. I tried bromocriptine, and I couldn't tolerate it. I was dizzy all the time, and even 3 months in, I was puking my guts out.

I was diagnosed with a prolactinoma in July 2009. I was on Cabergoline until 2011. I stopped taking it because I hated what it was doing to me, and nobody listened or believed me.

I went on it again in May 2023 because I was exhausted from having such elevated prolactin, and I was tired of not having energy and not being able to do anything. I felt like I was constantly in a fog.

Ever since restarting it, while the problems related to elevated prolactin have went away, I'm struggling with impulse control, strong sexual urges, and I'm terrified it's going to lead me to a divorce.

I spend money more freely. Like I don't even stop to think of the consequences of it. I gambled away $4,000 in the span of 30 minutes at a slot machine, and the only reason I didn't spend more was because I maxed out my debit card and didn't have anything left to spend. I've started watching porn, and it's ruining my view of sex, and I struggle to go a day without using porn to help pleasure myself. I nearly sexted someone before I pulled myself out of it because the last thing I want to do is cheat on my spouse.

I'm so irritable and angry now. Things that never bothered me set me off. I feel like a different person, and I don't even recognize myself anymore. My depression is at an all time low, and I'm terrified because of how impulsive I am.

I go back to the endocrinologist in August, and there's no earlier appointments available. I've called many times hoping someone canceled, and have my name on the list in case someone does cancel.

But I'm also at a loss and don't know what to do. When I don't take Cabergoline, my prolactin rises relatively quickly. I don't want to go back to bromocriptine because even taking it at night didn't help with the vomiting. I don't really want to have surgery because I'm terrified of surgery especially something so close to my brain. And I don't really want to not treat the prolactinoma because I felt awful without it.

I'm just not sure what to do anymore.

Today I forgot my phone password.
I made 15 attempts and ended up locking it, even though I remembered it the evening before.
It’s so scary to realize that something might be happening to your brain.
Earlier, when I just started treatment for high prolactin, I couldn’t remember my cats’ names at home — I would name two and then forget who I had already named and who was next. It’s really scary.
Has this ever happened to you?
Please, this is really frightening me.

Coming up to three months on Cab. Currently on 0.25mg twice a week.

First month was a struggle, felt nauseas and foggy all the time, with slight energy peaks at random times.

Second month felt incredible. Had so much energy, nausea subsided and libido came back, period started levelling out.

Now on this third month I feel I have regressed a bit. Whilst my periods are very regular, and I have no nausea, I am feeling fatigue like never before and my libido has completely disappeared again. Anyone else experienced this?

I have my review with the endo in 2 weeks, is she likely to put my dose up?

If yes, can I expect another tough adjustment period? 😫

My story began about 10 years ago, when I was diagnosed with a prolactinoma. I was prescribed cabergoline and wasn’t warned about the side effects, and I didn’t do my part in researching potential side effects, so I’ll own that. After about a year on my initial dose my dose was doubled. Within a year of my dose being doubled, I suddenly started having weird sexual urges. Before that, I wasn’t necessarily a super sexual person. I mean I enjoyed it, but porn was never really a thing for me and I probably thought about sex less than your average male, but my wife and I had a healthy sex life.

After a few weeks of having these urges to look up sex workers, one night when my wife was with friends I gave in. That night ignited something that I had never experienced before. After that all I could think about was sex, I wanted to have sex with as many people as possible. The easiest way was with sex workers. I spent hours every day perusing escort website trying to find my next conquest. I managed the finances and so my wife had no idea what I was doing. I became a master of deceit and she had no idea. Not once did it occur to me that this could be a side effect of my medication. I just thought I was raised in a religious, sexually repressed household and this was my coming of age and experiencing life.

After a couple of years of being obsessed with sex workers, I needed more intimacy. I discovered sugar babies. It was more of a relationship to me that escorts, even though there was a financial component to it. I spent hours every day perusing sugar baby/daddy dating websites and meeting college aged women for sex, most of them were ongoing arrangements rather than one time things. But I could never get enough. Usually within an hour or two of a meeting, I started craving my next one. I have no idea how I maintained high job performance and maintained this addiction, as well as how I kept this from my wife, but somehow I did. This behavior continued for roughly 5 years. It also included regularly going to local strip clubs. When I had business trips to Vegas I went wild. In 2024 i made a mistake and my wife found out. It all came out. She kicked me out of the house while we went to couples therapy. Over the next 6 months my behavior continued and in some ways became more erratic and more dangerous (drugs, etc.). I lied about it and after confronting me that she knew I was lying she asked for a divorce. That was 18 months ago.

About two months after her asking for a divorce, I lost my job. That same week, a family member suggested to me it might be this medication i was taking for my prolactinoma. I dismissed them, I thought no way, I’m just a fucked up degenerate that has no self control. After a few weeks I started to google compulsive sexual behavior and cabergoline. That led me to meet with my doctor and as him about that. He had never heard of that as a side effect but agreed to let me try going off it to see if it helps.

At first I didn’t notice much of a change. But within a few months. I completely changed. I was no longer obsessed about sex. I stopped going to strip clubs, having sugar babies, etc. I also started intense therapy for sexual addiction around this time. I had finally come to terms with the fact I had an addiction. As of today, it’s been about 18 months since I’ve hooked up with someone or visited a strip club.

This week we finished mediation and my divorce should be finalized soon. We are still on great terms, and I don’t blame her for wanting a divorce, but it’s still difficult. The day after our mediation was over I called her about something random and we both just broke down in tears, I still love her, and I think she still has love for me. We have two kids and are both committed to co-parenting in a way that is 100% about the kids.

I don’t want to completely blame the medication. I lied and hid that behavior for a long time, I was deceitful. The medication didn’t make me lie and deceive, but I’m 100% convinced it led me to the compulsive behavior. I know because of my personality before and after the medication.

I spent over $150,000 on sex workers and sugar babies and strip clubs over the years. I’m now deeply in debt and not sure if I have any future.

The only thing I can do is move forward and not let my past define me.

If nothing else, please learn from my mistakes and be careful while taking this medication.

My prolactin is high from a medication that works extremely well for me. I haven’t gotten a period in 7 months and my nipples leak if I squeeze them. Is it stupid of me to prioritize my mental stability from the medicine and just accepting high prolactin levels?

Hello ,

I’m a female found out my prolactin is elevated during my yearly check up back in 2023, since then I do follow up MRI and blood work the MRI showed 2 mm microendenoma, I did visual field test it came out normal , i was on plant based diet for a month my prolactin was in normal range and after I started eating diary im experiencing log headedness , blurry vision brain zap and some unusual symptoms im wondering if its related to food intake, I make an appointment to do MRI , my question is did any of you experience the symptoms i have and is it safe to do MRI with contrast i declined last 2times to do with contrast , im so afraid to be on med as i read many side effects with the two popular medications im so sensitive to meds and is the microendenoma brain tumor I try to read research some say yes some say no . Thank you for your time all .

Just want an even stronger support system but updating lots of people can also be stressful

So i have an MRI coming up to check for prolactinoma and did some research regarding mris in general , i found alot of people saying that this contrast agent had a long term effect on them (like brain fog and ear ringing and stuff like that)

Is it really like that ? And will this mri be done with a contrast agent (to check for prolactinoma)

Also a little side question how long does this whole procedure last because I'm stressing out..

The NHS is a bit of a post code lottery and some people have to advocate for years to be taken seriously. For those of us waiting, the lack of communication from the NHS can be tricky. So, what was your road to diagnosis on the NHS?

Hi I’ve been on Cabergoline for nearly a year and mostly no bad experiences-thankfully. I notice that my hands and feet get extremely cold - anyone else experiencing similar?

Rarely even try to think about it but I (24NB) was diagnosed back in Dec2025 but I had a hysterectomy in Jan2026 so I couldnt start medication until just a couple weeks ago in the end of April2026. A hysterectomy messes up your hormones big time so doctors wanted my body to somewhat regulate before I start looking at medication (Cab seems to be the most prescribed one and the one I chose too).

I work in the medical field already so I've searched every trial under the sun and I'm not seeing a high correlation to 0.25 Cab and lowered blood pressure. Granted, I have always had low blood pressure (usually 90+ over 70+) but lately it's been pretty often low 90s over high 60s. I haven't noticed really any other side effect yet but has anyone else had a similar experience? Has your doc ever said anything about it?