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Original poster

Prolactinoma and Pregnancy

33 replies

Chipper10 · 20/01/2010 16:40

Hello,

I have a 2.5 year old DD that I breastfeed for 18 months, during which time I did not have a period. I gave up breastfeeding to get my cycles back and get pregnant November 2008. To cut a long story short I have been diagnosed with prolactinoma, a benign growth on the pituitary gland. Started taking medication for this in July and 8 weeks later I finally got a period. I started TTC, got pregnant in October but then sadly mc in December. So back on the meds and waiting again for my periods to resume - it has been nearly 5 weeks.

I was just wondering whether there were other people out there that had/have this. It feels like I have been on a roller coaster and the mc has nearly taken it all out of me, plus with my history I am terrified that it will take me longer than normal to get periods back so I can TTC again. Part of me wants to give up TTC so that I can get on with my life as it feels like I have put so many things on hold in the hope that I will get pregnant - I just don't know what to do.

Thank you for your help

OP posts:
emeraldgirl1 · 22/01/2010 18:31

Hi Kezia - I have just had the results of all the fertility tests and they have all come back good so we are definitely concentrating on sorting out the prolactinoma for now and will think about ttc as and when... So I now have a prescription for cabergoline (like littleshamrock mentions above). It was my gynaecologist that referred me for the fertility tests (bloods, an internal ultrasound, and an HSG) and I was referred to him by my GP cos of the absent periods. I haven't seen an endocrinologist, I don't know why the gp assumed it would be better to see a gynae than an endocrine speciliast - I don't know if an endocrinologist would necc be able to refer you for all the fertility tests themselves but I'm sure they might well refer you to a gynae who could set all that up. I think it's really important, if possible, to have an idea of any other problems you might have on top of the prolactin one - completely reasonable to want to know. Then you can focus on ttc, or not, as you wish. Really hope you get some more answers!! And yes, it is scary, isn't it, to contemplate taking strong drugs when you have work to be doing... but as Chipper says it doesn't even sound as though the bromocriptine makes you feel TOO bad...

Thanks Chipper - it must have been horrid to be reminded of morning sickness And thanks also for the comment from your endocrinoligist about your mc. Such horrid luck but it sounds as though you are on the good road now...?

Thanks also littleshamrock for your post - I'm planning to be super careful whilst on the cabergoline but of course you never know!!! Can I ask how the cabergoline was for you? Did you get side effects worth worrying about?

Original poster
Chipper10 · 22/01/2010 07:47

I forgot to add that my endocrinologist told me that I was no more likely to mc than average, I was just unlucky.

OP posts:
Original poster
Chipper10 · 21/01/2010 20:19

Hi EmeraldGirl - just wanted to say sickness on bromocriptine isn't that bad, especially if you take it late at night then you can sleep off any side effects. Is just bad now as it is reminding me of the pregnancy I have lost.
It is rubbish and I can't believe I am so desperate to have periods and be a normal woman! Here's to us all getting our wanted BFPs soon.f

OP posts:
littleshamrock · 21/01/2010 19:58

It's rotten isn't it. My situation isn't exactly the same but I conceived after being diagnosed with a prolactinoma. I discovered I was pregnant with my dd about six months after starting on cabergoline and being careless with contraception having been told it may be a bit harder to conceive. I stopped cabergoline at about 7 weeks when I found out I was pregnant, as far as I know it has no side effects in pregnancy. Never had any problems or side effects from taking it either.
Have been ttc for six months now, still taking cabergoline and hoping for some good news soon. It's all a bit scary but with the tablets there's no reason why you wouldn't go on to have another pregnancy at all.

Keziahhopes · 21/01/2010 17:03

Hi EmeraldGirl1 - sorry you in a similar position. I am just starting out on the road to diagnosis/treatment - so awaiting referral to endoctrinologist and trying to persuade Gp to refer me for fertility tests. Was it your Gp that did that? My husband been referred, his SA a bit below average but apperantly "ok."

I am hoping it is my prolactin problem that is preventing a successful BFP,so if Iwas offered drugs would opt for ones that allow me to TTC ... but like you am scared of how medication might affect me in work (round of redundancies out now so daren't have time off!)

Were the fertility tests helpful, all ok, or are you awaiting the results? I am 34.

Hope your results tomorrow are helpful for you, let us know how you get on.

emeraldgirl1 · 21/01/2010 16:39

Hi Chipper and Kezia!

I started a thread of my own before I saw this one but thought maybe I might join you both here! I have a newly-diagnosed prolactinoma and and heading back to the specialist tomorrow to discuss medication. He has already told me that he would put me on bromocryptine if I wanted to start ttc and something called cabergoline if I did not want to start ttc - I think cabergoline is not safe to take if you are ttc but bromocryptine is - that sounds like your experience Chipper?

I am interested to hear that you said the bromocryptine makes you feel a bit nauseous - well, not so much 'interested' as a bit scared! I'm crap with sickness and have a horrendously busy couple of months coming up with work - in your experience Chipper was the nausea so bad it affected your life/work? Or am I being wimpy?!

A little bit like you Chipper (though I do not already have any DC) there is part of me that doesn't want to go down the route of ttc while trying to solve this prolactin problem - it seems very emotionally-draining. And at times I am not even sure I want to have kids at all. But I do understand how hard it is for you to contemplate ttc when you have the prolactinoma to deal with. Does your doc think the mc was anything to do with your hormones/the prolactin level.

And Kezia - like you I was discovered to have a high prolactin level (after being fobbed off by GP for 2 years because my late periods were, according to him, just 'stress-related!" I finally got a good GP who listened and sent me for blood tests. High monomeric prolactin level was found, then I was sent for an MRI to see if it was coming from pituitary - lo and behold I have a growth there. Have you been sent for an MRI or do you know if they intend to?

If it is any help, I have basically been told by my specialist that if I want to ttc they will put me on bromocryptine and if I want to not ttc, or to wait, then cabergoline is the choice as it has fewer side effects but cannot be taken during pregnancy/ttc. I have been sent off for all kinds of fertility tests (my partner too) to get a clearer picture of whether it would be OK for us to wait a little longer and try to solve the growth first. (I am 33) But as I say, I am not sure that I am up for ttc yet, if at all, so maybe all the fertility tests are a bit irrelevant and I shoudl just start taking cabergoline. I'm due to find out more tomorrow.

Good luck to both of you, I'm sorry to hear that you're both in this position, though I have not been down the ttc route myself I have close friends who are and I understand how frustrating and upsetting it can be when things are slow.

Original poster
Chipper10 · 21/01/2010 08:56

You poor thing I totally understand. Once I was on the medication it took 8 weeks for my periods to resume and I was back to my previous cycle length and got pregnant in 2 months. So I am hoping that it is this quick again, just the waiting for my period is driving me mad. I have been told it should be about 6 weeks post mc, so should be in roughly 2 weeks, however it took me longer than normal to get my periods back after I stared the medication originally. I was told to expect them within the month. So hopefully when you get on the meds you will be more average.
My GP prescribes them but under the direction of my endocrinologist and they got me back on the meds a week after the mc - so they have been absolutely fabulous.
I am on bromocriptine which is ok but does make me feel a bit ill, which was fine before the mc but now reminds me of morning sickness which I found really tough. Though it wears off the longer you take the tablets in my experience.
Obviously I am sorry for your experience but it is comforting to finally speak to someone with the same as me. And once you do have a baby, and you will, soon, you will be able to resume your periods post partum more quickly when you decide to go for another, if you decide to.
I really hope you get your diagnosis very soon.

xxx

OP posts:
Keziahhopes · 20/01/2010 21:29

Hi - I dont' have this "yet" -been diagnosed with high prolactin levels, not been able to conceive #1 ... only have light short periods. So it is something that is being tested for, am "in the process" of hopefully finding a reason for high prolactin levels (don't know how long it wll take to find out and get treatment!)

Sorry about the mc ... and hte history you ahve had. Was it your gp that prescribed the medication or an endoctrinologist? Is it worth going back to them, if you haven't already, to see what they can do medication wise?

I can say I am fed up of TTC#1 for last 16months and also desperate for a child now, but don't know how much longer I can contiue with false hope.

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