Prolactinoma: Living with a pituitary tumor & how I found out I had a prolactinoma.

Thank you for sharing your story. I was diagnosed with prolactinoma too. My prolactin level is at 881. :( I feel like alone and fighting my secret battle but my faith with God is getting more stronger. To everyone who has the same illness, I’m praying for you guys! We will get through this! :)

My story is similar. Discovered mine after my system went haywire after stopping the pill. After tons of bloodwork and MRI we discovered I had a 6mm prolactinoma. I took both the bromo and the cabergoline (one then the other, don’t remember which was first though). After about a year-year and a half my system was healthy enough to be able to get pregnant. My son is 4 now. I just wanted to share that with anyone on that journey, because I KNOW how hard it is. I remember crying in the endocrinologists office every 6 weeks when my levels weren’t there yet, and every time I took a negative pregnancy test. However after my son was born my prolactinoma symptoms have returned and events in my life have led me to not be financially able to seek treatment for it currently, I hope to have that rectified within the next year but it’s so nice to see a community of people who understand my struggle. Much love to you all.

So glad i found this video. Everything you said is exactly what I’m going through. I’ve never felt so physically, emotionally, and mentally drained from this. Praying for you and i hope everything gets better for you 🙌🏼

My prolactin level is at 67.5 and I found out about my tumor in 2008- when i couldnt get pregnant. Fast forward to now I have three health boys and years of putting my body 2nd. Ive just dealt with the symptoms but now the pressure and vertigo and nausea is bad amongst other symptoms. Today i was prescribed CAB and I am reserved on taking anything for it because I cant keep a health regimen of pill taking. Im horrible at it. Im hopeful that this drug will subside my lactation and increase my dopamine- on top of this im also very very anemic and my ferritin is below normal. I hate feeling alone in this and I too put a smile on my face and act like everything’s great and suffer in silence. Thank you for sharing your story, i truly appreciate your transparency.

Thank you so much for posting your story. It really helped me💗

Thank you for sharing your story. I’ve been living with a prolactinoma for 17 years. It started out at 3mm and has grown to 7mm x 1cm and is wrapped around my right carotid artery in the right cavernous sinus. I tried cabergoline and bromocriptine several times but the side effects were too much to bare and I was taken off of them. The nausea, vertigo, and overall fatigue and sick feeling were bad, but the mental and mood changes were the worst. I had deep depression, anxiety, and even hallucinations at one point. I am likely going to be put back on medication due to the fact the tumor grew recently and am meeting w new drs out of state soon. I haven’t met anyone with this disease in all the years I’ve had it but would love to form a support group to talk about our issues and things that have helped. My headaches are getting to be debilitating, and have been daily for 4 months w no relief from medication. Hope to hear from others out there. Thanks again for your story and kind words of strength. ❤️

Thanks for sharing your story, I found out I had it last year, I'm on Cab too on half a tablet a week!v been over aw year hope your ok and get better cc

it's so crazy that you just posted this now because I have my neurosurgeon appt tomorrow morning. Thank you so much we should keep in contact.

Ur story helped me and resonated so much with me. I am also diagnosed with the same and nobody understands!! It's so hard and people think I am fine when I am not. Thank u for sharing. When I heard ur experience which is a lot like mine too I didn't feel alone I'd like to try reiki next. I really think that would help. Also wearing lapis lazuli seems to help with the headaches I get from this too

Thanks for sharing your story. I was diagnosed with a prolactinoma 20 yrs ago and just now hearing so many people’s stories and struggled with the same symptoms. I’ve heard a lot of people connecting it to birth control which is interesting. I was 17 when they found mine on an MRI and it was before I ever used birth control so I’m not sure if that’s a connection, but it’s frustrating they still don’t know the cause. I’ve taken cab most of my time with this but as soon as I stop taking it the horrible symptoms come back. Luckily my vision hasn’t suffered however my ears have, as if it’s putting pressure on a different area. It sucks, and I have thought about the surgery to remove it but I’m scared of that. Hope you’re doing well today!

Thank you so much for sharing your story. I'm having so many terrifying symptoms and my prolactin levels are high. I'm currently awaiting my mri but deep down I know what the results are going to be and it's really just terrifying.

Thank you so much for sharing your story. My story is so close to yours it’s almost unbelievable. Praying hard for you. I go for my MRI on Thursday of this week. My prolactin level is at 487.

Thanks for sharing. I know you shouldn't look at a lot of videos before but it's good to have all information. I have my MRI tomorrow. My levels were 800 on my lab. I am trusting God for the best results.

Thank you for sharing your story. I think I'm going to get surgery for mine soon.

Thank you for sharing your story. I’m taking cabergoline considering surgery.

I’m right here with all of you fighting day to day with this and feeling all alone in the world with no one to talk to who understands what I’m going through 😢

Thank you 🙂. Very good video x

Wayne Bell. i am male and have travelled a very semiliar path to you with some variations, but here goes, i have what seems like a long standing health problem for many areas of my body, some as a direct result of being a victim in a road traffic crime inciddent and all the fallout that sticks with you for life, i regularly see specialists who give treatment to me but dont seem to access my medical records before they give me more pills or have me undergo surgery etc often with no positive outcome, but watching your video just now has after seventeen years of my health failing the light has dawned and yes, your right, there is no better specialist ao the subject of my body than i am, and yes i do need to take that truth and start organizing the specialist to meet my needs here and the errors they keep making as they dont seem to deal with me in joined up handwriting, its all fragmented, and remember folks after ten minutes of you putting down the phone after speeking with a health professioanal they have already forgot about you and the next patient is speaking with them. Im gonna draw out a small circle on paper, then enlarge that with a much bigger circle around it, im the one in the small circle, and i will divide the circle up into twelve segments, then write each of my health problems in each segment, then radiate each segment out to become a timeline and write down any up coming appointments with gaps between them, once this is laid out, i will easily be able to see which doctors are trying to tackle a specific problem i have, without them seemingly to have any knowledge off the other doctor and the helpful data that each of them have saved on their data bases, then i will begin to corralate theswe clashes and write down some short to medsium term goals on action planning to begin to join these people up, start to ,make some progress in bringing positive change quickly to my health challenges, Thank you Jessica once again, you can know that this day the lord Blessed me through your commitment to him to never give in, to be hope full for a future and to have a positive mind and approach throughout, May God |Bless you Mightily/

Thank you for sharing ❤

Hi Jessica! Any further updates on whether or not taking Cab is better for you? Do any of these medications reduce tumor growth? Or do they just stop tumor growth? Thanks for any info