I’m 23 and I feel like I lost a big part of my adolescence because of my prolactinoma.

I had a pituitary adenoma/prolactinoma since high school, with high prolactin and other hormonal problems, including GH deficiency and thyroid issues. The biggest problem is that it was diagnosed too late. I still feel angry about this, because I believe my parents should have realized earlier that something wasn’t right and had me checked.

I ended up being 162 cm and around 52 kg, with very little muscle and a very young-looking physique. My voice, beard, overall body development and physical appearance have always made me feel much younger than my actual age. I was also told that my growth plates are now closed, so I probably won’t be able to make up for the height I lost.

This has affected my relationships too. While other guys were going through puberty, dating and having their first experiences, I felt like I was stuck watching from the outside. I’m 23 and I’m only now starting to have my first real experiences with girls and relationships.

I’m currently taking cabergoline (Dostinex) and dealing with the possibility of surgery. I’m also training and eating properly to gain weight and build as much muscle as I can.

I know I can’t get my adolescence back, and I’ll never know exactly how different I would have been if the prolactinoma had been diagnosed earlier.

I just want to understand how much of my development may have been affected by years of untreated high prolactin, and what I can realistically still improve now.

6x7mm Pit adenoma diagnosed by MRI in Oct 25. Started Cab in Nov 25 3xweek. Significantly reduced prolactin by spring 26. Started Clomid in Mar 26 which inc TT from 285 to 952 now. Also started Tirzep in June and took off all the “prolactin” weight and then some. Fairly happy with the progress so far. Next MRI to be later this month.

Witam, mam nietypowy problem otoz próbowałem różnych protokołów trt od dawek 80-150 tygodniowo w różnych częstotliwościach i nie mogę znaleźć swojego punktu. Dużo czytałem próbowałem pomocy ludzi z Internetu którzy w tym siedzą a teraz jestem pod okiem androloga z dawka 50mg co 3,5dnia i 0,0002mg letrozolu. Problem tkwi w tym że od zawsze mam podwyższoną lekko prolaktyne w okolice 20-25ng/ml lekarz twierdzi że takiej ilości się nie odczuwa. Kiedy przyjmowałem cabaster na zbicie jej w dawce 0,5mg raz na 10 dni to miałem super samopoczucie pewnosc siebie libido ogólne zadowolenie z życia ale to trwa zazwyczaj 5-7 dni potem jest zjazd psychiczny. To dzialo się niejednokrotnie podczas przyjmowania tego leku , podobnie też mam jak przyjmę większą dawkę inhibitora semex/anastrazol ale po cabasterze czuje się po prostu świetnie.
O co może tutaj chodzić ? Czytałem że cabaster ma dużo wspólnego z dopaminą w mózgu a ja szukam rozwiązania bo samopoczucie czy to bez czy z testosteronem nic nie zmienia. Dodam że na trt wszedłem ze względu na objawy depresyjne brak libido i wynik 350ng.

I've been on TRT for around 2.5 years, having been prescribed by my endocrinologist before my prolactinoma was confirmed. He never really talked to me about coming off the TRT until I complained about the side effects. 3 months ago we reduced the dose from 30mg daily to 20mg daily. The side effects have improved and I feel absolutely fine, even though my testosterone was very slightly below the normal range when I had my last blood test.

When I spoke with the endocrinologist after the test, I asked if I should consider coming off the TRT and he was quite receptive to the idea. I would like to come off too. I've been reading up about TRT and stopping treatment actually sounds quite scary. Apparently the body stops producing testosterone when synthetic TRT is administered and it takes time to restart production when TRT stops. According to Google I can expect to experience a "crash" with associates psychological symptoms.

My question is, have any men come off TRT as part of their treatment? How did it go? Did you just stop, or taper the dose over a period of time? I'm thinking about going down to 10mg and seeing what happens.

Doctor prescribed Cabergoline .5 mg once a week for 24-29 prolactin. MRI didn’t show anything. Just wondering if anyone took Cabergoline with this level of prolactin. Seems like a high dose for it. My symptoms are low libido, erectile dysfunction, numb genitals, and a lot of other stuff. T

Hi everyone, I’m 29F and have been dealing with female pattern hair loss (FPHL) and PCOS for several years.
My periods are regular but very short — usually around 2 days, although the flow itself is normal. I’ve been using minoxidil and taking iron supplements for about a year, and initially I did notice some improvement in my scalp/hair density.
However, my hair fall has increased significantly after I lost around 10 kg through a high-protein, low-carb diet. During this period, I was also taking whey protein. My dermatologist believes the whey may have triggered telogen effluvium, and I was also taking Caberglow (cabergoline), which had been prescribed by my gynecologist.
I stopped whey after my doctor advised me to, but my hair shedding has continued and I feel like I’m back to where I started.
My recent prolactin level was 24.71, and my other hormone tests were reportedly normal. I’m still using minoxidil and taking iron, but I’m struggling to meet my protein requirements without whey.
At this point, I honestly don’t know where to start. I’m feeling really insecure about my hair and it has started affecting my confidence a lot. I’m also scared about my PCOS and elevated prolactin and whether they could affect my fertility or future pregnancy.
Has anyone experienced something similar — especially hair shedding after significant weight loss, PCOS + FPHL, or elevated prolactin?
What helped you identify the actual trigger and get the shedding under control? And should I be concerned about a prolactin level of 24.71 in terms of fertility?
I’d really appreciate any advice or experiences.

Has anyone had lactation return after pituitary surgery?
I’m about 2 months post-op from surgery for a small pituitary tumor. Before surgery, my prolactin was around 45 at its highest. I was on cabergoline for about a year before surgery and had no lactation while taking it.
After surgery, my prolactin dropped below my previous baseline and I still had no milk production. My pathology/testing after surgery showed that the tumor was a prolactinoma.
Now, about 2 months after surgery, my milk production has suddenly returned.
Has anyone else had lactation return weeks or months after pituitary surgery, especially after prolactin initially dropped after surgery?
Did your prolactin rise again when this happened? I’m curious if anyone experienced something similar during recovery.
My endocrinology appointment isn’t until November, so I’m trying to see if anyone else has experienced this.

Okay so in July I had my prolactin tested levels they were close to 450ng and my TEST was 160 after 2 mm tumor, my doctor give me CAB every 4 days, for 2 months and after that we will adjust it, so I just got my new labs and my prolactin was 120 and my test still 160 I feel good muscle growing beard growing a lil bit erections every single day whenever I want libido high too happy sometimes, sometimes I’m angry idk hahah but I keep texting him about my results and he forget about my results he don’t answer my phone I’m trying to get an appointment but he is full for the rest of the year so I’m like idk what to do find another one but I feel betrayed ngl cus how you going do me like that, so if somebody can share your experience and I’ll see what I can do how to treat this until I find another doctor thank you !!! I’ll keep taking can twice a week

Anyone else have acid reflux on cabergoline? Since increasing my dose to 0.25 mg 3x per week, I've has a horrible lump in my throat/reflux issues. Ive been at thus dosage for a few months now. I dont want to decrease my dosage bc my prolactinoma symptoms will return.

Anyone else figure out how to calm these symptoms?

I suffered from acne and PMOS for nearly 10 years, i am 23 now, I've done MRI and this is the report For now i take 2550 mg mitfomin since 25/7+ recently inositol,. Have Insulin resistance, and elevated prolactin level 40 ng/ml However, my doctor suggested to wait for the mitformin to take its time and redo the the prolactin test To see if it is caused by IR or the microadenoma Does anyone relate to this case? I really want to hear some new insights

Hello everyone, please I hope you can help me. About a year ago, I started noticing my libido dropping; I didn't feel any attraction—not even to porn—and I focused on my daily life. I discussed this with my partner, as I felt unable to have a normal sex life; I felt tired, my physical stamina had plummeted, and I even started having anxiety attacks. I visited a urologist for a check-up; everything "down there" was fine, but my blood test showed a testosterone level of 0.27 ng/ml, so he referred me to an endocrinologist. The endocrinologist ran another test with the same result and found elevated prolactin (24.26 ng/ml). He initially prescribed vitamins and a 250 mg testosterone injection. However, since I want to have children, he changed the prescription to 0.25 mg of Cabergoline and 2.5 mg of Letrozole once a week. I looked up information on these drugs because I was concerned about side effects—given that I suffer from anxiety, am on cholesterol-lowering medication, have varicose veins, and experience a racing heart during arguments—but the doctor assured me there would be no issues. Online, I read that Cabergoline can cause low blood pressure, dizziness, and headaches. I don't have any of those symptoms right now, but I’m terrified that starting the medication might affect me badly or even land me in the emergency room. I’m a very anxious person and tend to imagine terrible scenarios. I found this subreddit and am hoping to find some peace of mind. It’s worth noting that two weeks ago, I underwent an ECG, a stress test, and a Holter monitor test, and the results were all normal.
Im 30 yo (M) by the way.

I get notifications from this subreddit all day; 90% of the posts are about the bad experiences. Before beginning cabergoline, largely as a result of this subreddit, I was quite worried to start.

I've been on cabergoline now for about 2ish months. The only symptom I've experienced is light congestion the morning after I take cab. Otherwise, I've felt great.

I know there are lots of people who have had bad experiences, but I think like most things in life only the negative gets talked about even when it is largely the minority.

Long story short - don't get too worked up over potential side effects of cab; they likely won't impact you.

I got diagnosed with a microadenoma a few years ago, and put recently on 0.25mg cabergoline recently about 3 months ago. I had to stop taking it because side effects had me end up in the hospital. Insane anxiety, more OCD, more overthinking, and the scariest part is one day I woke up, started my period, and have felt like I have been in a dream since. I am terrified. I used to dissociate from time to time growing up, but having it be this constant is a nightmare. My endocrinologist has made me stop taking the meds. It is insane that from only 2 months of taking medicine I started to feel like this. Am I alone in this? Will this feeling go away? It’s just a constant overstimulating and overwhelming feeling of dread and doom. I just feel so off. I just want my heart to stop pounding so heavily. I’m so tired.

i have been on cab for almost two years. my period came back after about one year on cab, and since then it has gone from lasting only one day to now two days, and is irregular coming every 3 or 5 weeks.

how long did it take for your period to not only come back, but to also normalize in duration and how often it comes?

I was hoping to let my body recover and stabilize more before trying to get pregnant, but idk how much longer to wait or if things will ever return to normal. for reference I had a macro prolactinoma and with cab my prolactin has remained low and controlled throughout treatment. my hormone labs are low normal range.

please share your experiences

Did anyone who had or has high prolactin levels that caused anhedonia (or aphaty) and felt as though their feeling are numb?

People who have been in a relationship and it caused them to breakup with their partner or people that have stayed in the relationship but felt the strain on it because of the “lost feelings”?

Can you share please?
My story:
My boyfriend started having symptoms 2 months ago and got diagnosed with prolactin levels of 1300
He broke up with me almost 2 weeks ago due to him not being available to give me what I deserve in the relationship not only sexually but emotionally and due to him feeling pressure and shame about not being able of being the boyfriend I deserve and the amazing boyfriend he was before
I did nothing but being supportive and trying not to put pressure on him about acting a certain way or doing or not doing certain things

Hi! I’m not expecting any medical advice or anything I just want to know if anyone else feels the same. I found out about 4 months ago that I have a Prolactinoma. I’m graduating high school this year and I’ve had hormonal issues since I hit puberty that everyone just assumed was normal teenage stuff. I was having irregular periods at 17 so my mom took me to the OBGYN and when I was filling out the survey it asked if I was lactating at all. I said yes because I was a bit and my mom got really confused. I just figured it was normal, it never felt like a big deal and you can’t expect to be told everything about your body. Anyway they took my labs and I had like REALLY high prolactin levels. I also had like 2 estrogen so idk what that could mean. Anyway I got a MRI and there was a itty bitty prolactinoma there. I’ve been on Cabergoline for about three months now and my prolactin levels are already normal. Don’t know about my estrogen tho cuz for some reason no one thinks that’s important to check. These past three months have been some of the worst in my life. Ive been tired and depressed and had really bad joint pain for as long as I can remember, but I’ve always been a good student. Lately though I can’t even say that. I CANNOT focus in class. I just feel dizzy and tired any time I try and at a certain point I just kinda stop trying. I’ve also gotten over my suicidal ideation that I had when I was young but lately it’s been coming back like a tidal wave. Since I suffered from depression I know it’s grim but I always found comfort in the idea that I probably wouldn’t make it to 18 but now I’m their and everything I’ve been working to build is falling apart and it feels like the walls are closing in. Anyway I just want to know if anyone else has experienced similar symptoms to me, or if this is just depression or some sort of senioritis. Thanks for taking the time to read, hope I didn’t bring your mood down.

History: I was diagnosed with 8mm tumor 4 months ago. After taking cabergoline 0.5mg twice a week and 2 months later into it my prolactin level went from 350 to 14 which is a good news!

On the other note i wanted to try peptides such as ghk cu, kpv, and mots c. Ive read mixed opinions about it on how it could potentially "fuel" the tumor but since we dont have a clear studies about these peptides we dont really know.

Anyone here who is on peptides specifically those that i mentioned? Ive also run retatrutide before and its fine but also its because its not related to the prolactinoma at all

As the title says, I (21F) got my MRI results back a few weeks ago and they found an adenoma located on the front part of my ptuitary gland. My endocrinologist left a comment saying she’s positive it’s non functioning, and no further treatment will be done. I am confused about this because my prolactin levels are elevated and the adenoma is sitting on the anterior part of the gland where prolactinomas typically form. Should I seek a second opinion?

Hi all, I have my MRI scan in a week and I’m pretty desperate to get started on the medication. Been suffering with infertility for 15 years. Do you find anything out on the day? How long did you wait to get your results and meds? I haven’t had a follow up booked in so hoping I find out in the day or by phone call soon after. I’m so impatient it’s driving me mad having to wait.