My little friend.... the prolactinoma!

[Cay84]

Hi.... has anyone on here been diagnosed with a prolactinoma?? I was diagnosed in 2009 and have just started TTC after improvement in progesterone, only I have never had chance to speak with anyone who has the same. Would like to know what to expect when TTC if anybody knows???

 

[LouiseB]

Sorry, it's a new one on me but welcome to the forum

So had you stopped ovulating and having periods?

Is it just hormone therapy required to get you going again?

Are you ovulating atm? xx

 

[Cay84]

Hi!!! Thanks for replying I never stopped having periods but blood tests showed I wasn't ovulating, apparently because of where the tumour is it makes my prolactin levels increase (and my boobs leak!!!) which in turn lowers progesterone.

I've had a few different pills, finally settled on one now which doesn't make me sick. It's not a hormone replacement but reduces my prolactin so my progesterone has a chance of becoming normal again... confusing! It's gone up from 2 to 27 in the last year, and I think I have ovulation pains now.

The doctors say it's a common problem but I have yet to find anybody with the same thing!!

Is it worth getting ovulation tests and keeping an eye? I want to do everything I can but don't want to get too stressed about it! xxx

 

[laurat]

Hey Cay, welcome to the forum! Lots of lovely ladies in here. Im sorry Ive not heard of this either but I also have annovulation as well so I understand the frustrations involved with that. Hope someone can help !

 

[LouiseB]

I'd definitely advise getting ovulation tests if there is any sort of question mark regarding ovulation and your cycles

Unless you religiously have sex every other day throughout your cycle, then they will help you to make sure you are doing it at the right time. I know a few women that went from ttc for AGES and then trying OPKs for a couple of cycles and they get pregnant.

Plus, if you are getting an LH surge it's a good indicator that your hormone balance is pretty good. You need good follicle growth to get a surge.

And, you can also know when your next period can be expected

ClearBlue Fertility Monitors are well worth the money imo, but you can get cheapies.

Honestly, i'm not on commision

Keep a diary of all your dates too.

It must be so scary knowing that you have a tumour somewhere - any plans to remove it? How did they finally diagnose it? Did you have to go through all the usual fertility tests and ultrasounds and then they finally did an MRI scan or something?

Sorry for all the questions. I crave knowledge

I know it's harder to cope with something when you can't find anyone in the same boat! I'm there myself. Apparently my situation is uncommon but not unheard of - can i find anyone else in the same boat? Nope.

 

[Cay84]

Thanks for that, I'll definitely invest in some tests then!

It's only a small tumour on my pituitary gland, which apparently they remove via your nose!!! Thankfully it's benign and no advantage to removing it but it's just unfortunately placed on the bit that controls prolactin so I ended up full of breast milk with no progesterone... pretty grim.

I lived with leaky boobs for over 3 years whilst I was at uni without getting it checked out (bizarre when I think back seen as I'm a nurse!) and when I started with twice weekly migranes went to my GP, mentioned it and he referred me straight away to neurologists, had an MRI scan on xmas eve 2009 and been told I'll probably struggle to conceive by my endocrine consultant.

What's causing your problems Louise? Have you been trying for a while? It's great there are places like this to get it all out!

How come you are anovulatory Laura?

 

[LouiseB]

Through your NOSE?! Omg

Our issue is severe male factor infertily and possibly some clotting and immunes issues on my side but that just theoretical.

We've had a couple of cycles of ICSI but we don't get any fertilisation, except once and that was a poor quality embryo.

Apparently not getting any fertilisation with ICSI with a decent number of eggs doesn't seem to happen. Everyone i've found with similar either only had a couple of eggs anyway or had IVF.

 

[Cay84]

Sounds complicated and not something I know anything about tbh. Do they use ICSI on conjunction with IVF then? Hope you get some luck soon

I am having day 21 progesterone repeated again tomorrow so will hopefully know more then.