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...
Hi, ill try and keep this as short as possible, I just so happened to stumble upon this site but im encouraged to find how open and honest people on here are about their dealings and day to day fight with this tumour. Anyway heres my story....
Last year I would have described myself as an easy going, laid back but confident guy, I had a decent job, great wife, family and many friends. We enjoyed yearly holidays to fantastic locations, in all honesty my life was the envy of some of my friends and I was very happy. Fast forward 6 months and without being able to put an exact date and time on it i found myself very slowly and prob without realising at the time starting to question my happiness which led to me questioning my relaxionship, work commitments etc etc until I really didnt find any enjoyment at all I anything. I bacame very lazy (which i realise now wasnt laziness) very lethargic until one weekend we went away to visit relatives and i had what could be described as a major breakdown. The ironic thing was its was on my birthday and we had plans to do all the things that i loved doing but to me that day something 'clicked' in my brain, I had to be brought home by my mother, i was delusional, almost schitzophrenic like, infact I was treated as such until I finally ended up in a mental hospital. While there I had actually convinced myself i was dead and in hell, just writing this makes the feeling come back, i was actually burning in the most painful pain noone could imagine and that was going to be me for eternity, no end to this suffering. Obviously that was not the case and after a few days treatment of which I thankfully have no memory of I came to, still feeling complete confusion, pain, hopelessness etc. Weeks past and i had convined myself I was all sorts of people, from a serial killer to child killer etc etc, my brain was in meltdown! Well I said id try to keep this short but have babbled on anyway many doctors, psychiatrist, psycologists and endo visits later im back at home with my wife (whom id imagined I had killed) and things are very slowly getting back on tract, i have a 10mm pituitary tumour, chronic depression and severe anxiety disorder but i have hope and that is such a good feeling to have when considering only months ago i was 'dead'. My endo has actually said that the tumour 'could be' linked to my depression/anxiety but my psychiatrist believes It has almost definately been. Im now working with a psychologist who has made a great difference in such a short space of time, im a long long way from full recovery i recon but at least im on the right path, hopefully anyway. Ill try to keep future posts a little shorter lol but im glad ive found this site as its a relief to know that much of what ive been blaming myself for and lots of the feelings i feel are not my fault but the fault of this tumour!
Thanks for letting me share this with yous :-)
Last year I would have described myself as an easy going, laid back but confident guy, I had a decent job, great wife, family and many friends. We enjoyed yearly holidays to fantastic locations, in all honesty my life was the envy of some of my friends and I was very happy. Fast forward 6 months and without being able to put an exact date and time on it i found myself very slowly and prob without realising at the time starting to question my happiness which led to me questioning my relaxionship, work commitments etc etc until I really didnt find any enjoyment at all I anything. I bacame very lazy (which i realise now wasnt laziness) very lethargic until one weekend we went away to visit relatives and i had what could be described as a major breakdown. The ironic thing was its was on my birthday and we had plans to do all the things that i loved doing but to me that day something 'clicked' in my brain, I had to be brought home by my mother, i was delusional, almost schitzophrenic like, infact I was treated as such until I finally ended up in a mental hospital. While there I had actually convinced myself i was dead and in hell, just writing this makes the feeling come back, i was actually burning in the most painful pain noone could imagine and that was going to be me for eternity, no end to this suffering. Obviously that was not the case and after a few days treatment of which I thankfully have no memory of I came to, still feeling complete confusion, pain, hopelessness etc. Weeks past and i had convined myself I was all sorts of people, from a serial killer to child killer etc etc, my brain was in meltdown! Well I said id try to keep this short but have babbled on anyway many doctors, psychiatrist, psycologists and endo visits later im back at home with my wife (whom id imagined I had killed) and things are very slowly getting back on tract, i have a 10mm pituitary tumour, chronic depression and severe anxiety disorder but i have hope and that is such a good feeling to have when considering only months ago i was 'dead'. My endo has actually said that the tumour 'could be' linked to my depression/anxiety but my psychiatrist believes It has almost definately been. Im now working with a psychologist who has made a great difference in such a short space of time, im a long long way from full recovery i recon but at least im on the right path, hopefully anyway. Ill try to keep future posts a little shorter lol but im glad ive found this site as its a relief to know that much of what ive been blaming myself for and lots of the feelings i feel are not my fault but the fault of this tumour!
Thanks for letting me share this with yous :-)
I got so lazy... gained about 40 pounds and didn't care one bit. I no longer enjoyed playing the music I used to love. The world was just in a fog. Through the course of the next couple of years I was able to talk myself out of the depression and learned the valuable skill of not letting emotions run me but rather, running them. But in the midst of all that I was gradually getting more and more tired and could not feel energized or excited about life at all. At the point I started having headaches every day and regardless of 2 weeks off of sleeping and relaxing, I was still not refreshed... I went to the doctor. I had a 4.1cm prolactinoma and my prolactin was 4700! Testosterone was about 40. That was December of 2012.
Almost a year on cabergoline now... prolactin is down to 9.2, I have more energy, feel more zeal for life, and the headaches and blurry vision are gone. Testosterone is gradually coming back up... I think. It was 68 last blood test. Not enough to matter, but I can say that I am feeling much better! Turns out that the date the depression started was most likely the point that testosterone had reached a critical low.
But now that I have rambled on, I want to welcome you to the group and I hope we can help be a support structure for you since it is really hard to understand the situation unless you go through it yourself. So tell me more about yourself and your family. How did they handle things? How did your relationships change? I am still new to this and love to talk about it. :) Talk to you soon!
My family and especially my wife were amazing and continue to be so considering the hurtful nasty things I said to them at the height of my illness, it really came out of the blue to them but the quickly realised that something was defo medically wrong. I know it broke my Mums heart seein me being hospitalised but looking back I now know it was to basically save my life and im now grateful for that. Im defo on the road to recovery and im enjoying life again to some degree but I know ive a long way to go yet before id say im recovered. I too suffer from headaches and cant quite figure out if the are pituitary related or stress related, I suppose they could be a bit of both, glad I joined this site as it feels good to speak and read about others experiences. Id be interested to find out how much you think your tumour had to do with your depression hitting as I still have trouble accepting this but thats maybe just my anxiety/depression making it tough for me to accept.
Would just like to say a "Hello" again after an absence of 4 years. I set up and ran PituitaryChat which some of you may remember but for health and financial reasons, had to let it go, although I till have the 4,500+ messages from the forum backed up and hope to make it available again as a read only site as there is a huge amount of information there.
Hopefully, I will meet some old friends here. Since I was last involved with support groups, unfortunately, my health has taken a turn for the worse culminating in a second coma in 2011, this one lasting 26 days however, I am as stubborn as ever and I am determined to get my health back.
After spending many thousands of hours doing research which I continue to do, I am in a position to offer my opinion but I am not medically qualified to give medical advice.
I would be particularly interested in knowing if there are any Irish members here?
Should get the hang of this site soon and look forward to meeting people here.
Kindest regards,
Paul