Accepting the diagnosis
Hello !
First time I’m posting and openly discussing about my prolactinoma diagnosis I have to admit that I kind of tried to avoid sicussing it with my family as it’s honestly not easy, but for the past few months I started crying every time I would bring the topic with my partner or just thinking about it so I wanted to read some of your testimonies about your own diagnosis and how you managed it specially the medication !
Maybe that help me feel a little bit more comfortable and not as emotional.
I was diagnosed with a micro prolactinoma measuring approximately 7mm when I was 21 years old, got the operation 3 month after the initial diagnosis after 4-5 years of doctors not knowing why I didn’t have my periods, after that everything went great, my prolactine levels were perfects, my periods came back and my cycle was about 28 days, no other hormone disturbance thankfully.
About a year after my operation I started having longer cycle and my period disappeared again, after a blood test my prolactine went from 4-5 after the operation to 126 again (like before my surgery)
My endocrinologist talked to me about taking cabergoline at first I refused I was really scared to take a medication
(I’m absolutely not against taking a medication but I was scared of taking it for years as I never took medication that long)
Anyway we discussed about it and I agreed but my endocrinologist told me that I needed to take it at least until menopause (I’m 23 years old) when I asked him about maybe taking it for 3-5 years and then trying to stop it while being monitored obviously,
he told me that he preferred not to stop it until at least the menopause but to space out the dose like a pill every two weeks or three instead of 1 a week.
Honestly I think that was the hardest part, when I had my prolactinoma the only symptom I had was just amenorrhea, now with the medication I’m always tired, I can’t do my sport session like before, I have hot flash, and I have nausea…
I’m also scared of the mental side effects that are described, I don’t have any but it scares me.
Honestly for the past few months I just wanted to stop taking it and I wanted to stop any consultation with my endocrinologist I know it’s not a good idea, I’m not asking for any medical advice, but I wanted to know how did you accepted that?
I feel I need to do my “grief” of the life I had before the medication, and I feel like I’m not accepting the fact that I’m “sick” I don’t like this word but I never been someone with health issues and now that I’m always tired I feel like I don’t recognized myself, and also how did you do to mentally “accept” the fact that your going to take a medication for so many years ?
Maybe if you also have some advices to talk to about it with your partners or family, they’re very supportive but every time they ask me how it’s going I say “fine” because I don’t want to complain.
Thank you very much for reading my message 🙏🏻