Any one else with a Prolactinoma?

[MummyToPrince]

I'm 26 and was wondering if there is others with a Prolactinoma to share stories and experiences. I've had mine nearly 7 years now

I'd be really interested to hear stories on this. Just found at least four adenomas on my pituitary gland, one prolactinoma. So I'm terrified to say the least. How have you managed with it?

@springb0ks To be honest before I was diagnosed with it they say I was going through early menopause, I was mortified! I was then referred to an endocrinologist who done an mri and sent my scan to addenbrooks hospital they investigated the scan and found my prolactinoma! The consultant I was under was not educated enough so I was referred to a higher endocrinologist, who also doesn't seem to have much knowledge on prolactinoma's. Mine was left untreated for so long that it grew and grew and ended up pushing on my optic nerve and that has caused 2 blind margins on my eye so I have to have my eyes dilated every 6 months due to the swelling.. I was put on gabergoline and had an allergic reaction, so I was put on bromcriptin as my prolactin levels were 888 - dangerous stage - i then fell pregnant and the consultant was useless all the way through and was meant to be seeing me every fortnight whilst I was pregnant then after birth he was to see me every 6 months, he left me for 1 year 3 months and requested a blood test 2 months ago which come back all my hormone levels are high prolactin levels still in danger stage and my insulin isn't working properly, so he rang me and said to have another blood test done and to call him 2 days after having them, so I had my bloods done on Monday and rang him on Tuesday, I'm now waiting for what's going to happen next... Every day is a battle of headaches, no energy, vision problems, hot sweats, vomiting, shaking but I've had it for long it's become the new normal... I'm sorry this is long xx

I have 1 large adenoma on my pituitary which is extremely close to my optic nerve. I’m also on Carbogoline . Luckily my prolactin levels are good. But I have to have regular MRI and vision field tests. I also have a suspected small brain ansuresyum which was detected during my last MRI. Thankful that it’s been discovered and can be monitored..

@Springb0ks My experience has been positive, other than I absolutely hate having MRI’s, my endocrinologist has been excellent. If I have any concerns or questions I drop him a email and he always gets back to me. I haven’t had any headaches so far, and my andenoma is very close to my optic nerve. I’m on 0.5 carbogoline which is half a tablet once a week. I think having a Endochrine department that take notice and care is vital. But to be honest other than have to endure the 20 min MRI.. my life’s not changed.