TTC prolactinoma still no periods

[Letsbehappy]

I'm 27 and found out I had a prolactinoma in December (8 months ago now).

We decided last August (12 months ago!) that we wanted to get pregnant but I knew that my periods were absent and had been for over a year, and prior to that they were irregular for a couple of years. I had been seeing doctors but we were relocating a lot due to husband's work so it was quite difficult to find someone with time to take me seriously.

When we decided we wanted to TTC I became a bit more persistent with the doctors and we finally started to be taken seriously. After a few months of various tests, I was finally diagnosed with a prolactinoma.

I was put on to Cabergoline - 0.5 every other day, and of course, was told everything would go back to normal in a couple of months.

My prolactin levels were very high and went back to normal levels by February/March and all my hormones sorted themselves out. Everything was completely back to normal except my periods were still absent. They told me that they would start within a few weeks and I should have unprotected sex regularly because the Cabergoline will have made me very fertile.

But after a few more regular check ups with the same old talk and the same old 'well is there anything else I can do?', still no luck. On my last check up in May they said we may have to try something different next time but went for my next check up today and they are still adamant that I need to do more waiting and are refusing to do anything differently.

And I continue to wait.

Has anyone else gone through a similar journey with any success in the end? Or any advice? It's been difficult to find anyone in forums that are having the same problems.

 

[MoominGirl]

My story is a little different but hopefully some of it is helpful.

I also have a prolactinoma. We had talked for a while about TTC then I noticed nipple leakage while I was still on the pill. As we were planning to TTC I stopped the pill. The leakage got worse and also my periods didn't come back for months and when they eventually did, they were barely a bleed even though they were regular. I'd already seen the GP by this point and after they found the high prolactin, I was referred to endocrine.

I was then started on cabergoline 0.5mg but only once a week for me. My periods did normalise fairly quickly and my prolactin levels have been normal for about 18 months now. I now just have yearly follow up. The rest of my hormones have always been normal so from an endocrine point of view, they feel that my chances of falling pregnant naturally is the same as anyone else. It has not been quite that straightforward for us as we've had other issues as well but it's good to know the hormones aren't to blame!!

I think from what you're saying compared to my own experience, I would be pushing for more testing. My understanding is the high prolactin prevents ovulation which is why there are no periods. If you still have no periods despite normal prolactin, I would want to know if there is another reason why you may not be ovulating. Have you had any other hormones checked? I find endocrine only tend to focus on my prolactin and it was only because I'd had the rest done by the GP that they were able to tell me that the rest are fine.

 

[Letsbehappy]

I contacted the endocrine nurse a couple of months ago because I was getting frustrated that I kept seeing different specialists every time I went for an appointment and they all kept giving me the same good news of my prolactin levels being back to normal as though I hadn't already heard it the last few times I have been! (still yet to see the same doctor more than once). The nurse tested me for a few other hormones, mainly looking at oestrogen, but everything is how it should be.

I've decided to speak to my GP with the hope that she could maybe put a bit more urgency in to things.

The frustrating thing is that nobody really seems to have an idea of the what the next steps will be if they decide just waiting isn't working.

 

[MoominGirl]

It sounds like you went to the docs initially about the lack of periods rather than difficulty conceiving and it just happened to be that they found the prolactinoma (apologies if I've misunderstood). That was similar to me except in my case the cabergoline definitely resolved my lack of ovulation. I'm sure that many of my symptoms were being masked by the pill as I was still having withdrawal bleeds.

It sounds like seeing the GP is a good idea - perhaps push from a fertility point of view as this should get you a pelvic ultrasound at least. Although my experience with endocrine has been good, I would say that the focus is entirely on the prolactin levels but in your case it sounds like something else could be contributing to your lack of periods.