l forgot to mention that l am having the surgery in January and, based on my theory, if I never take birth control ever again after the surgery, will my hormones go back to normal, or will my estrogen continue to "feed" the prolactinoma cells and cause a reoccurance?

Interesting theory crystals83! Both myself and my fiance were thinking similar to you regarding oral contraceptives (OC) causing prolactinomas... My endocrinologist has told me that that is not true and that research has been shown that prevalence among patients is comparable regardless of OC or not. I tried to look for literature about this but theres just not much out there. OC themselves can increase the prolactin level but have not been shown to cause prolactinomas. HOWEVER, I am not completely sold on this and still have my own suspicions about some type of correlation between the two! I was on OC also for just under 12 years. And the only reason I found out about the prolactinoma was because I stopped taking OC and never got a period (& obviously wasnt pregnant). I have NO intentions of ever going back on OC again! I will say though that I read so much on this forum about depression and weight problems and cannot relate at all to any of those symptoms. I have had no problems with depression, anxiety, weight gain, etc. I only mention this because I think its important for people to know that not everyone responds the same.
It would be nice if more research was done regarding OC and prolactinomas, especially since SOOOO many girls/women are on them these days!

Hi Crystal
I support what your saying and wonder the same myself i was on birth control for the same around 12 years and i have recently found out the brand i was on- dianette is not supposed to be prescribed long term!! However i was on this pill for years!
I too like shanngot have vowed to never go back on birth control again! My endo told me because i was on the pill for so long it masked my symtoms and it wasnt until i came off birth control and my periods were absent for 5 months did i find out about my prolactinoma.
I agree with shanngot about reserch into prolactinoma and birth control as i know few women who are not taking birth control.
I too like shanngot have never suffered depression with my prolactinoma although i have suffered with anxiety, i think this is due to feeling unwell with prolactinoma symtoms and i gained a fear of feeling/being unwell!!
Crystal if you dont mind me asking what made you decide to go for the surgery? I am 29 and fertility is a big issue as i hoping to having a baby in next 2 years. After starting cabergoline my periods returned after 1 month and have been regular since after 5 months on cabergoline my prolactin levels are back to normal and all my other hormone levels are normal too. This is such a relief for me and i really hope this continues.
All the best
Haley

haley25, thanks for sharing! Its interesting to hear others with similar stories! Although I am sorry that you are having to deal with this at all. crystals83 - I too was wondering why the decision for surgery? have medications not worked for you or is the side effects? haley25 - do you plan to stay on cabergoline when trying to conceive? I am just curious because my endo told me there was little research regarding cabergoline and fetal impacts; there is much more out there on bromo and it is deemed very safe. I am not by any means telling you to do otherwise, I am just curious what you have been told to gain another persons point of view. Like you haley25, my biggest concern was fertility!!! I turned 30 three days before being diagnosed and that is still my biggest fear. I chose to try bromo first since it was older and had good research with pregnancy... I havent even been on it 2 months yet so still early. haley25 - best of luck with getting pregnant!!! I am still very optimistic and dont have any reason to give up hope so far!

haley25 & shannagot:
l chose to have the surgery because I absolutely could not tolerate the medicine. I ended up in the ER twice because of severe constipation, and that was from a quarter of a pill of cabergoline. I was one step away from surgery from impaction. On top of that within 12 hours of taking that pill, l was severely nauseated. Within 16 hours I was very. very angry over nothing, and within 24 hours, I was suicidal depressed. ever since I stopped taking them I feel much better, but my neurosurgeon wants to take it out now before it gets bigger and causes more damage.
I am also 29 and I also want to have kids in the near future, but Ive come to realize that I cant have a baby that I feel too sick to take care of. I guess I have to get the surgery because its the only option that I have left to live a normal/healty life.
My current situiation is that the surgery has a 90-95% cure rate for my situation.I know that there are risks to fertility but I need to be healthy too......

I've noticed more people part of this group is considering surgery. One endo told me 'do it', while another said 'it's not worth it'.

Before my diagnoses I truly believed I was going through a mental god thing and begun striving for prosperity, so I guess my condition is a blessing and a curse.

My biggest problem is that I want surgery for all the wrong reasons, weird as that sounds. For people like me, Tigertales and many others being miss diagnose for so long how would we even know what normal feels like unless the results of surgery is night and day?

Just my thoughts,

Much love!

Bugsy, it's so good to have you here...for me, it's the fact that the condition and the medication is making a madman everytime I use the medication...or don't.

I can't find any place of comfort or stability in this condition anymore.

Hi shanngot i was not given the option of another drug, only cabergoline. I am in the UK so not sure if things are a little different here. My endo told me i should not try to conceive without going to see him first so we can plan it properly and make sure eveything is ok, but he also said as long as my prolactin levels are in the normal range and my periods are regular which both are now i shouldnt have any trouble conceiving. I do worry though as i have read alot that suggests conceiving can be difficult with this condition. He said what they normally do for people with microprolactinomas they plan to stay on cabergoline for 5years, then come off the pills and for some the peoblems dont return but for others and most i think the tumour returns and they have to go back on cabergoline. I really dont like the idea of being on this drug for life, it really scares me. If you dont mind me asking shanngot what size is your tumour? Thanks for you kind wishes, i wish you all the best too.
Crystal i'm sorry to hear you had such a hard time on the cabergoline, i can totally relate when you said you could not look after a baby feeling so sick. I worry about that too when i am having a bad day.
I really wish you all the best with your surgery.
Haley.

Bugsy & tigertales - I cant imagine dealing with some mystery diagnosis for so long and probably wondering if it was all in your head or why the heck no one could tell you the problem! I feel fortunate to have found out when I did and try to move forward. I wish you both so much luck and love in your battle. Stay positive and optimistic (easy for me to say, right?)! I always try to tell myself (although I dont know if this will help) is that things could always be worse.
crystals83 - best of luck with surgery! if you dont mind me asking, where and when will you be having it done? I hear ya as far as not being able to care for a baby if you cant even care for yourself... nothing like feeling like you have morning sickness without even being pregnant!
haley25 by tumor measured 8mmx8mmx10mm so it was technically still considered a microadenoma but a large one. I get my levels re-checked in a few weeks but I was hoping I would get my period back before then... I have asked Santa for my period for Christmas! haha - pathetic! But in all seriousness, I have spoken to multiple neurosurgeons (I am an RN and am fortunate to have access to some amazing physicians) and would consider surgery in the next year only if my levels dont come down with meds... Its interesting that you werent offered bromocriptine haley25, although I am learning that your healthcare is much different than ours here in the US

Shannagot:
My MRI is scheduled for January 14th and the surgery is January 15th. My neurosurgeon is Dr. Marc Mayberg at the Swedish Pituitary Center in Seattle, Washington.
My surgeon has been in practice for about 34 years and does about two pituitary surgeries a week.
And by the way, yes i do feel as if l have morning sickness all the time. Actually lve felt like lve been in the first three months of pregnancy for about two years. The longest human pregnancy ever!!!!! I cant imagine howd ld feel feel if l actually was in the first trimester......

crystals83 - best of luck! thats a month away - how exciting! I am on the east coast but have heard and read about both that center and physician. I will be thinking about you and praying for a positive and safe surgery; hope that you keep us posted! :)

I agree. I was on the depo shot for almost 3 years. I got it after having my son at age 20. Prior I had no issues. I quit that and within a2 years started symptoms. I have horror stories about obgyn, miscarriage, bad endo, bad neuro you name it.. After loosing a baby ( after taking a Huge dose of dosinex to even get pregnant) I ended up with headaches and vomiting my whole pregnancy due to this tumor. Never gained weight but lost over 35 lbs. ( which I had gained over 60 prior due to disorder - now they say its not linked to weight gain but I say BS ).
My endo refused to approve surgery, even though my 15mm tumor only dropped to 7 mm in 2.5 years on. 6 pills a week.
While pregnant I quit for 2 months and it shot up to 11 mm

Well I contact one last neurosurgeon with a hoe and a prayer. Jus so happen to find one whom for years has preformed about 8 a day twice a week. Studied out of the country with one of the best specialist when it came to removal of these tumors. He didn't need endo approval and agreed to to it after one visit. I had the baby 2 weeks early due to health reasons and yesterday ( with a 10 week old exclusively feed baby). I had the surgery to remove it. Less than 36 hours later I feel GREAT! My head is no different than having a stuffy nose. And I can still breastfeed my baby on the type of steroids I have to take.

Even the dr said he didn't think it was ever gonna get much smaller n I would be on dosinex forever. You and I both know tts about $1k a month without insurance. Screw that!

Now I'm cured, will get my Lobito back, and no more fiorcet and other pills to pop.

I know these doctors say BC has nothing to do with it and the weight gain isn't related but toooooo many people have the same story.

I too told my dr. No hormone BC after this.
I'm good. Lesson learned. Unlike the instructions on my shampoo bottle I will no wash and "repeat" the same mistakes

MzThang:
I really got frustrated with my doctors where I live as well telling me that my symptoms arent related.
As of now my symptoms are my sleep schedule is super messed up and im tired all the time. Like exhausted.
My doctor also said that no neurosurgeon would want to take out tumor that small and my surgeon said it would be the perfect time. You are supposed to trust doctors but its hard to when you know that there is something wrong and no one will listen and you know that the information you have is correct, but theyre doctors right? They are supposed to know these things. It just seems that people with these types of tumors have to fight for everything, especially a disgnosis and a good doctor.
I, just like you, will never take birth control again because i think that it caused all of my problems. Watch, in the next few years there will be lawsuit commercials in TV about birth control causing pituitary tumors. I actually thought about looking into it myself but you know "that cant happen with BC". It almost seems as if doctors and pharmaceutical companies dont care as long as they make money. And plus I dont have the energy for that fight just yet.
I think that there is a connection but nobody will admit it.

I forgot to ask MzThang, did they mess up your fertility hormones with removal of the tumor? That is one of my biggest fears that they will mess up my LH and FSH and i will be infertile and I dont have any kids yet.....

Crystal: go for the surgery if you can get it homie. I won't say I've "made a full recovery" yet, but things are so much better then when I was on the cabergoline, and they are improving.
Whatever you choose I know will work out great. I believe in you!