Prolactinoma Support Group

A prolactinoma is a benign tumor of the pituitary gland that produces a hormone called prolactin. It is the most common type of pituitary tumor. Symptoms of prolactinoma are caused by too much prolactin in the blood or by pressure of the tumor on surrounding tissues. Prolactin stimulates the breast to produce milk during pregnancy. After delivery of the baby, a mother's prolactin levels fall unless she breast feeds her infant.

1 Online
  • Eveningart

    Endo taking me off Cab...?

    Hi everyone,I can't believe I've just found this group after years of dealing with a prolactinoma. Hurrah- people who understand!!So - let me just jump in and ask a question. I've been on Cabergoline- succesfully and almost side-effect free- for 5 years. I do still get some fluctuation in my prolactin levels, but generally (after initially being on too high a dosage that made me pass out!) they...
  • deleted_user

    Diet and Prolactinoma

    Hi guys,I'm thinking about possibly going on a vegetarian diet (sad, because I love meat), and was wondering about how not eating meat would affect my tumor and how my body reacts to meds. Eating food with fewer hormones might help shrink tumors.Does anyone have experience with this? Is there any foods that help/hurt how you react to our medications? Drinking alcohol makes my side effects more...
  • So I was having UTI like symptoms last night when I noticed blood in my urine. It didn't hurt to pee, I just constantly felt like I had to go and it was extremely uncomfortable.(Back track to two nights ago when I had a really sharp stomach pain. I've been getting these randomly for the past several years. Two Thanksgivings ago, I had pains so severe that I ended up in the hospital. They gave...
  • Hi everyone,First off, thank you for allowing me to join your group. I'm in the process of getting a diagnosis for a series of symptoms that I've been dealing with for almost six months now. Like most, it was a little embarrassing, so I waited until about a week ago to let my doctor know that I was lactating, even though I am not nor have I ever been pregnant. I am 27 years old and on treatment...
  • About me: 26 yo M diagnosed 10 months ago with a golf ball sized prolactinoma with a PRL around 2,000. My initial symptoms were frequent headaches, partial vision loss and low energy/libido (Test was around 100).Today I thankfully have 20/20 vision again, much less frequent headaches, and definitely feel more energetic. The size is about 60% of what it used to be.  PRL is around 40 but Test is...
  • astrophysicscat

    Looking for Answers

    I'm seventeen and one random night about a month ago my boobs randomly started leaking. They stopped but my mom took me to the doctor and he tested my prolactin. It was 48 with normal kidneys, liver and thyroid. So now I'm waiting to get an MRI in two weeks, and tonight my breasts are leaking again! I am so worried that this is all I can think about. I'm wondering if I could something else...
  • Cherrybombs

    How did you come to terms with everything?

    i really don't know what to say. I mean I recently found out I have this thing I know nothing about. Originally I went to the doctors to inquire about birth control and how to be safe- and it ended with me getting a blood test. Fastforward to a week later I found myself alone getting a MRI, with everyone just giving me smiles and acting as if it's normal. Then two days later I'm meeting with a...
  • hi all,i first discovered my pituitary macroadenoma in September 2016, about 4-5 months into my first pregnancy. i was suddenly having blurry vision in my left eye and an MRI showed a 22mm tumor compressing my optic chiasm. i had raised prolactin levels, but prolactin is high anyway during pregnancy, so the doctors can't tell if it's a prolactinoma or a nonfunctioning tumor. i then started on...
  • Knight_Writer


    I think I get more and more nervous about being with someone physically and emotionally. So much has happened over the past few years emotionally, physically, and emotionally with just myself that I am extremely hesitant adding someone else to the mix. With the last person who truly hurt me with all of my fears, I don't want to open up to someone again. Even when I started to get close to...
  • Tulaker

    Not sure what to do now

    Hello all,A few years ago (I was probably 22) I noticed that I was secreting liquid from my breasts and it scared me to death. I have always had pretty light/absent periods so that wasn't alarming for me. But after Google-ing like crazy I realized that it was probably connected. I finally got the neve to tell my mom (not about the breast milk but about the late periods) and went to the doctors....
  • deleted_user

    Low Blood Pressure from Cabergoline

    HiAnybody experience low BP from cabergoline? How low? What did you do to get your blood pressure back up?I get low BP from the cabergoline and I'm on a really low dosage. On Christmas it was 75/42--Usually not that low though. My doctor suggested eating more salt which kinda works but I don't know how much to eat or how often. Just curious about other people's experiences.Thanks,Sheila
  • celticnoel

    Post op

    So after discovering my 1.2cm tumour 3 1/2 years ago I finally had my op 2 days ago, I've been through if not all then most Of The side effects that are a regular complaint on here, my prolactin levels to begin with were at 14'000 which the endo was shocked at! Post op I feel pretty good actually with the main complaint I've not slept AT ALL since waking up in theatre. I just can't sleep without...
  • Purplepenguinpo


    Hey guys! I've had a prolactinoma for 8 years now. I was 15 when I found out I had it. I remember crying because I felt like I was never going to be normal because I had never had a period and I was discharging white liquid from my breasts. I asked my mom to take me to planned parenthood (at the time I had no health insurance) to see if I could get put on birth control. After they took my blood...
  • broncosgal91

    Going CrAzY!

    Hello everyone...I was diagnosed with Prolactinoma about 3 years ago and have been on Cabergoline for majority of the time. Anywho, this past year and a half has not been the best and so I was not able to consistantly take it. When I first got diagnosed I did not have a period but now I have had a period for 89 days! :( I was able to see my Endocrinologist yesterday and he is puzzled by the fact...
  • fendertelemusik

    nearly 10 years on treatment, now med free but.

    Feel absolutely no different, i took my last dostinex pill a month ago and my last hydrocortisone pill 3 months ago. I was told all my levels were normal was slowly lowered till i could discontinue them. In the 10 years i have not seen any of my symptoms decrease with the exception of gynocomastia stopping.This condition has wrecked my life, it has caused me to withdraw from the world, i've lost...