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Prolactinoma and Birth Control Pills

I have been successfully treating a prolactinoma with cabergoline for the last 4 years. Tumor is now gone, but I still take a low dose of cabergoline to manage my hyperprolactinemia which is still present. A month ago, I decided to try going back on a birth control pill (talked about it with my endocrinologist first) after 2 years of dealing with a painful IUD. In one month I feel like I have gone backwards about 2 years in the progress I have made in my overall health - I'm now suffering from headaches, anxiety, difficulty concentrating, dizziness, lots of strange sensations in my head and neck - in short many of the symptoms I had with my tumor. I have not had my prolactin levels checked, but suspect they are elevated again. Even if they aren't, it's clear my body doesn't like this hormonal shift. I'm curious as to whether anyone else has had this problem and how they decided to deal with it? I'm going to discuss other options with my NP and endocrinologist but I would love to hear any feedback from folks who have experienced something similar and whether they found a birth control option that worked well for them.
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I used to take birth control pills, for basically 15 years straight. Chronologically, I was taking the pill, then my husband had a vasectomy so I stopped taking the pill, and within a couple months, my body was acting pregnant when it wasn't. So I took the cabergoline for a while, maybe a year maybe two, and then my tumor had shrunk enough that my endocrinologist supported no longer taking the cabergoline. Success story. That was 3 and a half years ago and this past weekend, my symptoms became evident again. In retrospect, symptoms have been present for at least a few weeks. I hadn't thought much about the birth control being the catalyst until the last couple days and I see now that I'm not the only one that has thought the two may be correlated. My main anecdote to add to the conversation is that I've been birth control - free for I think five years, tumor- free for three and a half years, and my tumor seems to have come back. I mean, I haven't had my appt yet but I'm lactating... so I think it's back.
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Avatar universal
I know it's been almost a year now. But I would like to know, what ended up happening? Did your tumor go away? And how did you get the tumor in the first place, was it because of the birth control?
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It is scary when things change! I do hope that it is all side effects from the pills and you just have to find a new type.  I had to experiment with several types until I finally found one that did not drive me nuts. However they did not always regulate my period. But it was better aka at least more predictable and less long on the pill than off.

Keep us posted.
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Avatar universal
Thanks rumpled. I have contacted my endocrinologist and my NP, just waiting to hear back at this point. Feeling less frightened about everything today - trying to remember to approach my symptoms with curiousity rather than fear and take it one step at a time. :)
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Avatar universal
I would schedule with your endo asap... Btw the tumor usually shrinks on meds so it may be growing back.

Then I would work out either a different bcp, or see what other options are out there. I am not sure if you are looking for temporary or permanent and the tech changes all the time...

Keep us posted!
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