Hello (sorry this is a very wordy reply!)

I'm 36 and after years of very irregular periods (if any at all!) I was finally diagnosed with a prolactinoma 5 years ago as we wanted to start a family (although like you, it took incompetent doctors nearly 2 years to diagnose it!). Just to complicate matters further,I was also diagnosed with Polycystic Ovaries.

I was started on Dostinex (Cabergoline) starting off with half a tablet 2 times a week increasing every 6 months to 1&half tablet 2 times a week. It took around a year and a half for my periods to return and although they wernt regular (34-42 days)I felt at last something was happening. I was also on Metformin for the Polycystic Ovaries.

After 4 years on cabergoline and no sign of pregnancy I was disappointed that my periods stopped again and in August 2007 we were finally referred to a gynocologist to discuss fertility treatment, I was given a pregnancy test in November and a scan of my ovaries of which both were negative and the fertility treatment was due to start in Feb this year. In January I felt something wasnt right and did my own pregnancy test before going back to my doctor and it was positive! It turned out that I was 6 months pregnant and it had been missed by all the so called specialists! it was a big shock to me and to the doctors but I had my baby boy in May and he is happy and healthy with no complications! My consultant also told me that in some cases a pregnancy can 'burn' the tumor out and I am waiting to find out if this is the case as I am not on any medication at the moment.

Cabergoline is a medication that is increased gradually (every 6mths they increased my dosage by half a tablet) so if I were you I would give it at least a year for it to really kick in. After 5 yrs on the treatment my prolactinoma has gone from being 9mm to 5mm so its quite a slow process. When you go back for your 6mth check they will probably increase the dosage for you if your periods haven't started but you must tell them that you are anxious to fall pregnant as after 4 years I began to feel that I was an experiment and was really impatient for the treatment to 'do something!'

Please try and be patient with the treatment as stress can make your prolactin levels rise, your periods will return but they have to find the right dosage to kick start them for you at 6month intervals.

Anyway, sorry again for the essay and I hope this helps as there really isn't much information/support on this condition. I'll be keeping my fingers crossed for you. Feel free to email me if you want any more advice etc at pantos@btinternet.com

Amazonix
x

I have finally been diagnosed with a micro prolactinoma after nearly 3 years of battling with my useless male GP whose opinion was that I should be glad that I wasn't having periods and terefore couldn't get pregnant because having kids was a hassle.

I've been taking Cabergoline for nearly 2 months now but haven't had a period yet. I did a test this morning and I'm not pregnant. Has anyone else had experience of prolactinoma, Cabergoline and/or getting pregnant with this condition?

Sorry about the wordy post but I'm new to this and don't know the shorthand!

Hello (sorry this is a very wordy reply!)

I'm 36 and after years of very irregular periods (if any at all!) I was finally diagnosed with a prolactinoma 5 years ago as we wanted to start a family (although like you, it took incompetent doctors nearly 2 years to diagnose it!). Just to complicate matters further,I was also diagnosed with Polycystic Ovaries.

I was started on Dostinex (Cabergoline) starting off with half a tablet 2 times a week increasing every 6 months to 1&half tablet 2 times a week. It took around a year and a half for my periods to return and although they wernt regular (34-42 days)I felt at last something was happening. I was also on Metformin for the Polycystic Ovaries.

After 4 years on cabergoline and no sign of pregnancy I was disappointed that my periods stopped again and in August 2007 we were finally referred to a gynocologist to discuss fertility treatment, I was given a pregnancy test in November and a scan of my ovaries of which both were negative and the fertility treatment was due to start in Feb this year. In January I felt something wasnt right and did my own pregnancy test before going back to my doctor and it was positive! It turned out that I was 6 months pregnant and it had been missed by all the so called specialists! it was a big shock to me and to the doctors but I had my baby boy in May and he is happy and healthy with no complications! My consultant also told me that in some cases a pregnancy can 'burn' the tumor out and I am waiting to find out if this is the case as I am not on any medication at the moment.

Cabergoline is a medication that is increased gradually (every 6mths they increased my dosage by half a tablet) so if I were you I would give it at least a year for it to really kick in. After 5 yrs on the treatment my prolactinoma has gone from being 9mm to 5mm so its quite a slow process. When you go back for your 6mth check they will probably increase the dosage for you if your periods haven't started but you must tell them that you are anxious to fall pregnant as after 4 years I began to feel that I was an experiment and was really impatient for the treatment to 'do something!'

Please try and be patient with the treatment as stress can make your prolactin levels rise, your periods will return but they have to find the right dosage to kick start them for you at 6month intervals.

Anyway, sorry again for the essay and I hope this helps as there really isn't much information/support on this condition. I'll be keeping my fingers crossed for you. Feel free to email me if you want any more advice etc at pantos@btinternet.com

Amazonix
x

Hi. I am being treated for micro prolacinoma since last year, with Cabergoline. I was diagnosed afer birth of my daughter 2yrs ago. Initially i was advised to cease Cabergoline for 1 month prior to pregancy. However each tme i stopped the medicine, the prolactine levels rose again. Now I am being advised to continue with Cabergoline to get pregnant. However, I am really conerned about possible risks to the foetus, as all reaseach suggests to cease Cabergoline prior to prenagnecy.
Sorry for long email

Any advise pls !!
Many thanks

sorry, i've not heard of prolactinoma but am glad for you that you've finally been listened to, what some gp's come out with is just unbelievable!

Good luck hon

Rach x x x

Hi,

Four years ago I was diagnosed with micro prolactinoma and I too took Cabergoline. I had been told that it could stop me from getting pregnant but after trying only for a month I feel pregnant. I had no complications during the pregnancy or birth.

Now, when my daughter is 2.5 years old we have started treying for a baby no.2. I am late a few days now byt the pregnancy test was negative but when I 'examined' my breasts today a little bit of milk came out. Now I don't know whether that's because I am pregnant or because my prolactine level is very high - I haven't been taking the medication since fiding out about my first pregnancy.

I am not sure if this is of any help but first time around I got pregnant straight away so I am sure you'll be ok.

Ivana

Unfortunately I cannot offer any advice on your condition as I have not heard if it either. Not much help to you am I!! But I will say, what an ass your doc sounds! & Hopefully someone on here will be able to help you out a bit more than I can. I'm sure though that you won't be short of support on here, the gals are great.

I'll bring up a post that shows the abbreviations for you.

tc Caz xx

Sorry mate but I'm no help with this as I've never even heard of it but if it helps I kind of know how you feel cuz I've got a Bicornuate Uterus and no one on here had heard of that either. You just wanna talk to people who have the same condition as you and see what hurdles they faced etc - I remember it well.

I found lots of people with all sorts of infertility problems on a website called fertilityfriends.co.uk and they have been amazing help for me. I've spoken to quite a few people with a B/U now and it has put my mind at ease.

Hope that helps a bit and good luck with TTC.

Take care
Bea x