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 am a 29yo female who was diagnosed via MRI with a 4mm prolactinoma back in May, 2012. I was put on .5mg of cabergoline and took the first pill about eight weeks ago and thought I was gonna die. Well I had severe constipation and nausea. I had to skip the next week so my bum could heal, but after that I cut the pill to .125mg by my endo. I have always had a very low tolerance to medications to these little baby doses still pack a punch with me.
I take my pill at 3:30am on tuesday morning. Within 12 hours im very nauseated and tired, my head kinda feels weird. By 16 hours i very very irritable, like i wanna punch people in the face. By 24 hours im pretty depressed and i wanna isolate myself and have guilty feelings.
My endo didnt want to try me on bromo because she said that if i cant tolerate the cabergoline, i definately wont tolerate bromo.
So what the hell am i supposed to do, i feel like im stuck between a rock and a hard place. I wanna have a baby soon because im almost 30, but ive read that it is not good to get pregnant with an untreated prolactinoma, if you can even get pregnant. also untreated i feel like crap, but as of lately i feel awesome when my week winds down. By friday/saturday i feel awesome, so i only get a couple good days before i have take another one.
I have asked about the surgery but i was told that there could be damage to the pituitary for a tumor that small, and if they damage the gland ill never have kids and ill have a host of other problems. I feel like im stuck in a conundrum.....Is there anyone else out there who went through this crap and what did you do?
I take my pill at 3:30am on tuesday morning. Within 12 hours im very nauseated and tired, my head kinda feels weird. By 16 hours i very very irritable, like i wanna punch people in the face. By 24 hours im pretty depressed and i wanna isolate myself and have guilty feelings.
My endo didnt want to try me on bromo because she said that if i cant tolerate the cabergoline, i definately wont tolerate bromo.
So what the hell am i supposed to do, i feel like im stuck between a rock and a hard place. I wanna have a baby soon because im almost 30, but ive read that it is not good to get pregnant with an untreated prolactinoma, if you can even get pregnant. also untreated i feel like crap, but as of lately i feel awesome when my week winds down. By friday/saturday i feel awesome, so i only get a couple good days before i have take another one.
I have asked about the surgery but i was told that there could be damage to the pituitary for a tumor that small, and if they damage the gland ill never have kids and ill have a host of other problems. I feel like im stuck in a conundrum.....Is there anyone else out there who went through this crap and what did you do?
In May, i got diagnosed with a 6mm prolactinoma, and got put on dostinex twice a week too (cabergoline). My doctor told me i could be on it from 1 year to 4 years...then i read some people stay on it for life. It's my 8th week this week so I know how you're feeling a bit. I'm so sorry to hear how bad it's been for you, i've had to completely change my diet due to the 'severe' constipation. I have read it isn't good to try and get pregnant, that's something you'll have to discuss with your doctors, i think it's mainly important you get your prolactin levels down if they are high, before trying. I too asked my doctor about changing meds cas i was hardly functioning the first few weeks, but he said the same thing you did, i'd probably not cope on bromo. It's slowly gotten better, the first month i had holidays (thank god) and wow...if i had a job or my uni to go too, i don't know how i would of coped! it's already a struggle getting out of bed.
Don't mind me asking, why 3.30am?? the only way I've coped so far, is on a monday and thursday night at dinner, i take half a pill with my dinner, so by the time it hits me i sleep. I may wake up feeling horrible but it's the only way i can cope. My doctor even suggested taking it while i eat and before bed.
I'm sorry i don't have so much info, the only way i've learnt is through some lovely people on this site, and i check nearly everyday because I personally hate medication, and never thought i'd have to go through this. I posted a similar post, and people have mentioned (and my doctor) it could take nearly 6 months before you can really start functioning properly. It's the fatigue that gets me, i really hate it, i use to be such an active person...but now i don't even do that. It's very depressing hitting this slump - but i think it's great you joined the site, and if you really want kids, i've read SO many success stories (on here too)!! Don't let it get you down. I'm only 21, i don't want kids yet, but i cried when i heard it may not be possible. But i think you always gotta look at the positive side, and once you get that prolacintoma down, i'm sure it may happen for you. Apologies for the novel!
I hear you, I hate taking medications.
I am now on 3 (.5mg) Cabergoline pills per week.
I spilt my pills in half, and take half a pills 6 days per week.
If you read through the post here you will see that most of the worst side effects fade.
The last time my doc boost my dosage - I thought I was going to die (or rip someone's head off at the least).
Would suggest looking at what you eat, and consider changing your diet.
I generally felt like crap once I started the Cabergoline, and constipation was terrible.
After I removed all the processed food from my life and switch to main whole green vegetables and fruits I started feeling much better.
I bought a VitaMix, and drink 32-100+ ounces of green smoothie per day.
Check out Victoria Boutenko's books:
http://www.amazon.com/Victoria-Boutenko/e/B001JS03S6/ref=sr_ntt_srch_lnk_1?qid=1344536255&sr=1-1
For what it is worth: I lost 30lbs, and became less moody and tired.
Surgery goes really well with the right doctor. I had mine pulled out at USCF.
I'm concerned you're getting misinformation from you endo and I hope bromo works out better for you. Good Luck!