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...
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 new doctor.
My mom's in the room with me, trying to be supportive (because hey I never liked doctors anyways) and this lady comes in and just goes: hi I'm _____. you have this, its a tumor. This is where it is. We're gonna put you on these pills- take them twice a week, we'll get more blood work. If anything comes back different- we're gonna perform surgery.Thats what I got all in a spans of ten minutes, five being the introducition of who this woman was.
out of all this my mother gave me a high-five in my stunnedness. A high five. You got a tumor baby- ROCK ON! And all I could think about was what did I do wrong? Should I have eaten better? Excerized more? Not cut off that guy on accident when I was learning how to drive at fifteen?
I don't know when I started to cry on the drive home but i just remember my mother saying to stop. That I was treatable. That I shouldn't be crying, and when I explained that I was scared she said," no you're not really scared you're confused because you don't understand." But that's the thing I am terrified.
and I still have yet to tell my father.
My boyfriend, bless him, is being as supportive as he can. He lets me rant and cry and tries his best to get me to sleep so I don't have these side effects. He's upped the attention, told me all the right things you would want to hear from any partner, but.....while it shoothes somewhat- I still find myself fusterated and angry and crying in the middle of the night when I've got time to think to myself.
Ive always been the one to quickly process emotions but with this I seemingly just stay stuck. I don't know what to do and with everyone in my family telling me to stop acting childish I fear I am being childish.
If anyone out there can offer some advice to how they processed things, what helped them come to terms with everything, or how to explain this to a family member- please let me know. I could use some help wading through this.
Ironically I was elated when my PRL levels came back indicating that it was a prolactinoma, a tumor that could most likely be managed without surgery . Just the chance of knowing this piece of evil in my head could be shrunk without surgery is what gave me the hope and motivation to do what I could to try and shrink this thing. I started with a lifestyle change, working out more, eating better, and most importantly staying on top of my cabergoline.
It's been 10 months and thankfully what began as the size of a golf ball has shrinked about 60%.
I hope you are coping better with the diagnosis and that all the symptoms subsided.
Cheers.
My name is Tiffany and I am 28, I found out about it when I was 24 and had almost exactly the same experience as you! Like word for word.
It is hard and I still get teary eyed when I go to my doctors appointments every few months. I feel so vulnerable and it's still a little scary sometimes not knowing what the future holds but not as bad as that first visit... I felt like I wasn't in my body.
I handled/handle it a little differently than most probably would but it worked/works for me. I am a private person and didn't want to share it with people, all of a sudden you have a bunch of people treating you like a poor little puppy dog feeling sorry for you or giving a bunch of unwanted advice, or people trying to be extra nice to you and it wasn't my thing. I told my family and we all cried together and processed it differently. My mom was supportive but depressed and my dad was very optimistic, almost unreasonably at the time which broke my heart and frustrated me all at the same time... but as for other people, I didn't tell them. I didn't think it was anyone's business. I felt like it was my thing and I only told people close to me and that I trusted.
I was able to process it in steps this way, little pieces at a time and coming to grips with it at my own pace.
I wish you all the luck! It will get better, it just takes some time.