Microprolactinoma & Me: When Are You Having Another Baby?

Microprolactinoma definition (I found here):

A prolactinoma is a benign tumour (non-cancerous swelling) in the pituitary gland. Prolactinomas make large amounts of a hormone called prolactin.

The pituitary gland lies just below the brain. It makes several hormones, including a hormone called prolactin. (A hormone is a chemical which is made in one part of the body, but passes into the bloodstream and has effects on other parts of the body.)

Prolactin helps the body to produce milk when a woman breast-feeds. It also has effects on other hormones in the body.

Small prolactinomas (less than 10 mm) are called microprolactinomas

This is what I have been diagnosed with since the age of 20 in 2009. I first found out because I started lactating slightly. At such a young age and in the middle of university I was worried I might be pregnant, however a trip to the doctor followed by a few hospital appointments and an MRI confirmed a microprolactinoma. For many years it didn’t bother me, I took my medicine and that was that. No other effect on my life.

That was the case until I gave birth to Lily. Due to the microprolactinoma and the effect it has on the pituitary gland I had a massive oversupply of milk. This caused me to have numerous blocked ducts, and various bouts of mastitis. At one point I was even hospitalised for 5 days with an extremely bad case of mastitis just after Lily was born. Eventually however my supply settled down, and breastfeeding became much easier.

microprolactinoma

This was all shaken up again when it came to weaning Lily off the breast. I originally planned to stop breastfeeding Lily at a year. However due to having to cut down so slowly so that I didn’t get mastitis again, it took a further 6 months to gradually stop. If I’d just stopped completely at a year I would have become so engorged and in pain. I was petrified of getting mastitis again.

Despite these issues in the grand scheme of things my microprolactinoma still didn’t really bother me. It was very difficult having an oversupply of milk yes, but it was largely manageable. It has only been recently that I am starting to feel quite down about it.

microprolactinoma

Lily is 2 and a half now, she will be 3 in May, and so that question keeps popping up everywhere..

When are you going to have another baby?

I smile and say oh not yet, we’re waiting a bit longer, like it’s just a choice that we haven’t decided on yet. The reality is we have got to the stage where at some point soon we would like to start trying for another baby. But we can’t just yet. The reason being my periods have not really returned properly since Lily was born, back in 2014! No periods means no ovulation means no baby. Now I’m not saying we are ready right this second to have another one, but I don’t like that the choice at the moment is taken away from me. The reason it’s taking so long for my periods to come back is when your prolactin levels are high your body thinks you are pregnant, so stops ovulation. I need to wait for the medicine to reduce the levels and then they should come back.

I know we are so so lucky to have Lily and getting pregnant with her was so quick, I shouldn’t complain. But still I feel upset that my body isn’t doing what it should be. I end up worrying that my periods will just never come back properly, and the choice of how big my family is isn’t my own.

microprolactinoma

I’ve never met anyone else with a microprolatinoma, so I don’t know anyone in the same position or who has been through a similar thing. I found a support group on Facebook today which I think could help me vent a bit. It will also be nice to talk to other people who have experienced the same things. Last week I had a very light period and I was so happy I actually Facetimed Joe to tell him, and to see his face light up was lovely. I know together hopefully we can get there, but I feel impatient and frustrated with how slowly it’s all going.

Whenever I have a hospital appointment I see a different doctor as well, so there’s no continuity there. Each time I find myself explaining the situation and each doctor has a different approach to it. Some are more cautious than others, today when I had an appointment the doctor was cautious. Choosing to stick me at the same dose of the medicine and wait another 3 months for a follow up appointment. 3 MONTHS. There’s just no urgency about it with them, wait and see wait and see. Well we’ve been doing this slowly slowly thing since I stopped breastfeeding in November 2015, and it doesn’t seem to be getting us anywhere.

So this is my grumpy, frustrated, tired vent. Have you or anyone you know, or friends of friend’s ever had anything like this? I’d love to hear from you if you have.

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8 Comments

  1. What an interesting blog post. I’d never heard of it before now!
    I do hope for your sake everything starts to settle soon, in the meantime, ignore the questions. Everyone always asks and it’s no ones business but your own x

  2. This is such an interesting post, I’d never heard of this before. I feel you with the oversupply though. Its horrific. I also have a rare condition ‘unicornuate uterus’ I have 1 ovary, 1 fallopian tube, 1 kidney and half a uterus. I found a facebook group with others who have the same condition and it helped so much to vent and especially when I was told i’d struggle to conceive and possibly carry a baby to term. I was so happy when I read success stories! Good luck on your journey and I hope when the time is right you finally get your pregnancy and it’s all happy and healthy.

  3. This was a really interesting read – something I’ve never heard of! Thank you for sharing. Also love your blog – I’ve only just discovered it x

  4. You poor thing, I’ve neve have heard of this but do not know anyone who has been through it. I can only imagine how tough it must be to go through this. But it seems you have a great support network aruond you, you will all decided what s best.

    Lindsey
    http://www.londonmumma.com

  5. Oh wow, that sounds difficult! Poor you. I’ve never heard of it before so it’s great you’re raising some awareness. Really informative post. I don’t think people think when they ask such questions about children, sorry that it’s sensitive for you. Hope it settles down soon lovely!

  6. I 100% appreciate everything you’ve said in this post! When trying for Rory I was diagnosed with Polycystic Ovary Syndrome which is similar, kind of, very irregular periods with not much sign of ovulation. Rory happened by fluke once I had given up obsessively trying and was waiting for fertility treatment. I have the same fears for number two – will we be as lucky second time round?

    1. It’s so nice to hear a success story and really hope you’re as lucky when it comes to number two. I think when the pressure is off sometimes it can end up happening, I’m trying to keep thinking positively and make sure I’m healthy and ready for when it happens (when rather than if- trying to keep that positive thinking!) xx

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