Hello! That's intersting that it seems your prolactinoma is triggered by taking the pill...I've never heard of that. I can confidently say that the pill had/has nothing to do with my prolactinoma, as my tumor and levels were high without ever taking the pill.

Hi i had been on the pill for about 1 year before i was diagnosed with a prolactinoma. I have wondered if the pill might have caused it. After reading your post i am definately going to go off the pill and see if i can go off the medication... and see if it stays shrunk. Just curious what pill were you taking???
Cheers

I had one doctor tell me that it might be cause by a sudden stopping of the Pill. It throws the hormone balance off.

Well, I got normal results back from the MRI and bloodwork, so I guess a prolactinoma is not causing my new issues. I read the side effects from my birth control (Loestrin 24 Fe) and it lists nipple discharge as a possible side effect. I am still going to see a different endocrinologist. The pill I had been on in the past was Ovcon, I think it was orthotricyclin based. This makes me wonder if oral contraceptives are worth all the effects they have on your body...

I was recently diagnosed with a prolactinoma and had been on the pill (Orthotricyclen Lo) for about 6 to 7 years previously. I stopped taking it in February of 2009, and have not gotten my period since. Upon first going to my gynocologist, I asked him if the birth control pills I was on could have anything to do with this. He took no time at all to tell me "absolutely not", but I have been skeptical ever since. It makes me furious that doctors prescribe BCP without fully knowing and/or explaining the side effects of being on or off them. It makes complete sense that they could effect your pituitary gland and cause a prolactinoma. BCP are directly related to the pituitary gland and supposedly cause side effects when being stopped after so long. How long were you taking BCP? What kind were you on? I have been trying to research this for weeks and your post was the first that lead me to believe that I was not the only one.

I had only been taking BCP for 1 to 2 years before I was diagnosed with the prolactinoma. I think I was on Ovcon when I started having problems. About 4 months after I started the BCP I lost my period. I tried multiple different BCP and finally my period returned. I also experienced heart palpitations which seemed to be caused by hormones. The gynecologist/endocrinologist I am going to says all low dose BCP have a tendency to make you lose your period. He says there is nothing to worry about. He also said that 20 years ago it was "proven" that BCP did not cause prolactinomas. I really trust this doctor, he is nationally renowned, but I still question the BCP. My doctor also told me that unless a prolactinoma causes the prolactin level to go above 100, he would do nothing to treat it. I do worry about what BCP are doing to me, but they are so convenient that I am going to keep taking them in between having babies as long as the prolactinoma doesn't come back. I just quit taking them to try for another baby...as long as I have a normal period first to clean everything out since I haven't had one in so long...

Hi WoodsieChic remember me?? I replied to your post June of last year. And after reading your post decided to go off the pill (Levlen) and then 6months later stop taking my medication (Dostinex) which i was taking to treat my Prolactinoma. I'm just posting to update you and everyone else who is wondering if their Prolactinomas could possibly be caused by the pill.. to tell you that its now been 7 months since Ive stopped taking my medication and my Prolactinoma has disappeared completely leaving my doctor baffled!! My doctor telling me that she doesn't know why my Prolatinoma hasn't returned and that i must have some unique reaction to the pill which causes it to grow!!!! I had been taking medication to treat my Prolactinoma for about 5 years with regular doctors visits, blood tests and MRI scans and cant tell you how happy i am that i came across your post which gave me the idea in the first place to first stop taking the pill and then after a period of time stop taking my medication. I had previously tried going off my medication and not seeing a possible connection i continued to take the pill and the Prolactinoma returned after about two weeks. I just wanted to come back on here and say thank you!!! And i sincerely hope that the information in this post can help someone else. Thanks everyone for posting your stories. Cheers!!

kakadoo, I am so glad this post was able to help you! Now I am really convinced birth control and prolactinomas can be related. My endocrinologist had promised me they weren't related but I was still skeptical, now I know he must have been wrong (or lying to protect the BC industry). I went back on the pill but I am paying close attention to my body. If it comes back, I will def quit taking the pill. Thanks so much for your update! It made me have a great day feeling good that I was able to help someone by asking a question :)

Interesting! My endo told me if I decided not to treat my prolactinoma, I would *have* to stay on bc pills, since it keeps your progesterone and estrogen levels up.

Hi WoodsieChic,

I told questioned my doctor about that because I have been diagnosed with Prolactinoma. I have always been very regular and started birth control just to reduce the cramps in 2007. Late 2008 i got off the pill and a few months after that my period became a bit irregular. Through out the year it became more and more irregular. Then finally in July of this year i completely stopped getting it. The doctor did the blood work and MRI and found high prolactin levels and the tumor by my pituitary gland. I thought it was due to the birth control but she had said that it was not because of that.

Hi everyone wow i cant believe its been over a year since my last post! I have continued to not take any BCP's and my prolactinoma has still not returned!! I feel sooo much better off the medication as well (Dostinex) which gave me tiredness, headaches and trouble with concentration. WoodsieChic there is no doubt in my mind that BCP's cause prolactinoma's... maybe not all of them but I'm certain that the pill at the very least contributes to prolactinomas growth.

I was diagnosed with my prolactinoma at the age of 15 almost 16 years old after experiencing severe headaches and tiredness and breast discharge for which i visited the doctor for many times and was just told to take Nurofen and at one point was accused by the doctor of taking drugs and that that was why i was so tired etc which is just ludicrous! I visited several doctors for help because i wasn't able to go to school or function normally, all of them said it was nothing. It wasn't until my worried mother looked on the internet and researched all of my symptoms (tiredness, headaches, discharge etc) and discovered prolactinomas she immediately took me back to the doctor and demanded that they do a blood test (which none of the doctors had previously done) and a scan of the pituitary gland. My mother actually had to argue with the doctor in order to get these things done which in retrospect i think clearly should have just been done without question when an otherwise healthy 15 year old girl comes to you with severe headaches and breast discharge!!! But anyway the scan revealed a prolactinoma on my pituitary gland and i was then sent to an endocrinologist who gave me dostinex and i without any concerns or thought continued to take the pill. After about 3 months all of my symptoms had subsided and the endochrinologist suggested i go off the dostinex to see if my prolactinoma returned which it did in approx. two weeks. So back on the dostinex i went. I took the dostinex for about a year and got symptoms from it like tiredness, headaches, fainting spells, joint pain etc. So my endochrinologist put me on a different medication called norprolac which was new and much better with much fewer side effects. They made me have an ultrasound of my liver and gall bladder before starting the medication however. After 3 months i had a check up with my endo and i mentioned to her that i had none of the side effects i had with dostinex but that i was experiencing insomnia and decreased appetite (i lost 10kg while take norprolac) she didnt say anything about. After about 6months i started suffering from severe abdominal pain. After it occurred for the 3rd time i rushed to doctor and had another ultrasound on my liver etc and was told i had developed gallstones... even though 6 months prior there had been no trace of any gallstones in my first ultrasound. Despite all this my endo said that norprolac was safe and doesn't cause gallstones (despite there being a warning label on the norprolac box saying something about the liver). So i continued to take the norprolac for another 3mths when i returned for my 3mth check up and I told her about how tired i had been, about the fact that i was loosing alot of hair and also about tingling i would get in my arms and legs/feet she asked me to have a blood test to check my folate and b12 levels (which surprised me that she wasn't already checking these things whenever i got a blood test before my 3mthly check ups with her) and it turns out i was anaemic because having gall stones meant that i wouldn't eat certain foods many of which were dairy. My endo then told me to go to my GP to get B12 injections every 3-4 weeks. She also sent me to a surgeon to enquire about having my gall bladder removed after the consultation i was certain that at the age of 18 years that i wasn't just going to rush and get my gall bladder removed straight away especially if it could be managed through monitoring my diet. My endo told me that i was being irresponsible and risking my own life by not having it removed. I told her that i was not going to be taking norprolac any longer and wanted to go back to taking Dostinex but at the lowest dose possible, which i did. After I did this my gall bladder attacks went away, my B12 level went back to normal without injections and after awhile i began to wonder if the pill might be causing my prolactinoma to grow i asked my endo but she was certain that the pill doesn't cause it to grow. I kept wondering this and eventually came across WoosieChics message on this forum and decided that at my next endo visit i was going to run it by her my plan to go off the pill and then dostinex. She again said that it wasn't what was causing my prolactinoma but i still wanted to give it a try. I went off the pill almost immediately and then a month or two later stopped taking the dostinex. After about one week of being off the dostinex i felt amazing, i had so much more energy and was much less tired! At my next check up my prolactin levels were within normal range and its been the same ever since for over two years.

After going through all this I know that doctors can be wrong, they dont know everything. It's your body, you know it better than anyone else and if something doesn't feel right then youre the best judge of that. I'm actually quit angry and annoyed with my endo about all of this because I feel like every step of the way my family and I have had to persevere and have been the ones to in a sense do the doctors job. I'm definitely not an endochrinologist but I was the one to suggest going off the pill and then medication in order to see if my prolactinoma came back... not my endo.. shouldn't this be her job!? And now with everything that's happened i feel like i have to fight for an answer to the question of why birth control pills cause my prolactinoma to grow! She has made absolutely no attempt to figure this out she only tells me that i just have a unique reaction to the pill and I don't think this kind of explanation is good enough because I am still young and want to be responsible and would like to know my options for contraception, simple as that. Im also angry about the fact that most of this could have been avoiding had she suggested at the start to go off the pill. Having a prolactinoma has impacted my life a lot, It was prevented me from living my life like any another teenager/ young adult and this is what really annoys me! But I am happy that this was worked out sooner rather than later. Sorry about the length of this post. I hope this forum can help someone else in the same situation. :)

Cheers

I don;t know if BC can CAUSE the prolactinoma, but I do know that the estrogen in it can raise prolactin levels in people who have prolactinomas. My levels always jump way up when I'm on it. I had mentioned to a couple doctors that my symptons and levels always seem to jump when I'm on BC, and they said they didn't think there was a connection. I'm now seeing a MUCH better doctor, much more specialized, and when i mentioned it, he said, "yes, of course, BC will elevate prolactin levels."

WOW finally!! im am not the only one that believes this. I was always regular with my periods. NEVER missed a period it was always always exact every month. I went on Ortho MIcro Nor which is the progesterone only pill. I went on it for about 3 months. Then got off it of and periods continued. Soon after i went back on it... and was on it for about 3 years. NEVER got a period. I found it weird so i asked like 3 doctors. they all said it was normal. I then stopped for 1 year and no period. They gave me pills to jump start my periods... got one period and none again. THen i find i have prolactinoma... there has to be a link. I wish they did research

If birth control pills were the reason for prolactinoma why would men get this tumor as well?
Do not go off the meds! I did that because i was young and thought the doctors were lying. Birth control pills has nothing to do with prolactinoma. If your prolactin levels are high then your estrogen is low.. When estrogen is low you are at risk for Bone diseases later in life. I already have a low density level because I did not take birth control for seven years while I was trying to let the tumor lower itself.It did not work for me and now I am trying to normalize things so I can get pregnant. Please listen to your doctors about this!

I have a prolactin of 120. I've been struggling with elevated prolactin for 5 years. I never had any problems with my periods or anything until I gave birth. I NEVER took birth control in my life. Just letting everyone on here know. I disagree with the birth control theory.