It was roughly 10years ago during the summer holidays just before starting my 3rd year at university when I first noticed the symptoms that would later lead to my diagnosis of a Prolactinoma. A Prolactinoma is also known as a Pituitary Adenoma. This is also known as a benign (non cancerous) tumour in the brain on the pituitary gland.
The original symptom was lactation. I noticed two tiny wet patches in my bra and was shocked to see milk coming out of my nipples!
After a trip to the doctors and several pregnancy tests later it became clear pregnancy was not the cause. I was referred for blood tests which showed extremely high prolactin levels. A prolactinoma as I have mentioned is a tumour on the pituitary gland. The pituitary gland produces a number of hormones including prolactin and the tumour increases this hormone.
Prolactin is often called the “milk hormone” as it is this which stimulates the body to produce milk after childbirth. It is due to this that I started producing milk despite not being pregnant or having given birth.
Once high prolactin levels were found I was sent for an MRI scan to confirm. As expected the results showed I had a small growth on the pituitary gland. Prolactinomas usually grow very slowly and some not at all. Generally as long as they aren’t near the optic nerve they don’t cause too much trouble. Some people go their whole lives without knowing they have one.
It’s not known what causes prolactinomas and there are two types- microprolactinoma (10mm or less), and macroprolactinoma (greater than 10mm), mine is a micro.
Once I was diagnosed we went through the treatment options of which there are two: medication or surgery. In America it is much more common to have surgery to remove the growth than in the UK. However this is brain surgery and as with all surgery is not without risk. In the UK it is normal practise to instead go down the medication route.
I was started in the Autumn on a drug called Cabergoline which I was to take once a week to start with. The drug would then be built up gradually as and when needed.
I would have 6month-yearly check ups with my endocrinologist to keep an eye on my prolactin levels. Yearly MRI scans to monitor the size and position of the tumour, and yearly echocardiograms- a test to check the heart as a very rare side effect of the medication is that it can cause problems with the heart valves.
It was scary and daunting to think of this growth in my head, and that I would likely be on this medication for the whole of my life. I wanted to know what effect this was going to have going forward. I’d been on the pill prior to discovering the prolactinoma, so as far as I knew my periods were normal. However once I came off the pill they disappeared. This is common when prolactin levels are high, as many breastfeeding mothers don’t have periods until they stop feeding. The same is true of a prolactinoma when levels are high.
Ovulation stops when prolactin levels are high which causes the lack of periods. One of the best signs of fertility is having a regular period, so the fact I didn’t have one was worrying. This naturally led me to the question – does a prolactinoma effect fertility?
The answer to that is no not normally once prolactin levels are brought down to a fairly low level. And this was happily the case for me when conceiving Lily.
After roughly 6 months on Cabergoline my levels dropped low enough for me to regain my regular monthly cycle. I didn’t go back to the pill as I wanted to keep an eye on my natural periods. This was a great indication of whether my levels were remaining low. I stayed on Cabergoline for another 5 years. My prolactin levels would periodically stick at a certain level until we upped the meds, as if my body got used to that dose and didn’t respond to it until we increased it. To be honest I barely noticed that I had anything the matter with me: I took my medication and had no side effects.
Fast forward to 2013. After a whirlwind romance with my now husband, Joe we had been less than careful in the bedroom and after noticing I was suddenly lactating again and was late on my period I thought I had better do a pregnancy test. We had been on holiday and I was distracted with the new relationship so I let the weeks pass by without really thinking I could be pregnant. Therefore it was to my surprise when I looked at the pregnancy test and saw it flash up 3+weeks! I was in fact around 7 weeks pregnant.
I had always been told that if I wanted to have children I would have to come off the medication straight away or perhaps even before we started trying. So I nervously made an appointment at the doctors to find out if this pregnancy was OK. The doctor however was completely unphased, told me to stop taking my medication from now on, offered his congratulations and sent me off with a midwife referral.
The rest of my pregnancy was pretty standard. I saw my endocrinologist and a fertility specialist every 3 months as well as the normal midwife check ups. The endocrinologist checked my visual fields to make sure the tumour wasn’t pressing on the optic nerve and asked if I was getting headaches which I wasn’t. The prolactinoma during my pregnancy had no real effect on me whatsoever. These extra appointment actually felt pretty pointless, though I appreciated they were keeping an eye on me.
In May 2014 Lily was born, a happy healthy little girl weighing 7lbs exactly. I was keen from the start to breastfeed and so I remained off the medication whilst I breastfed Lily. It was now that I suddenly felt the effects of my prolactinoma. Instead of a “normal” supply of milk I had an enormous amount. From day three when my milk came in I felt incredibly uncomfortable and the speed and pressure that the milk came out was impressive! I could shoot it across a room! Poor Lily had to negotiate this high speed feeding when she was so tiny, although with my huge supply she didn’t stay tiny for long!
In all seriousness my supply was a problem in itself. It sounds crazy to say you have “too much milk” but believe me I did. I would never feel empty and my milk ducts got clogged which led to mastitis. I have spoken about my battle with various bouts of mastitis before and it was due to my prolactinoma that I suffered so badly with it. Eventually however my supply did settle down and I found a system that worked for us. I would feed Lily on one side per feed so every other feed a breast would usually be emptied.
Once I eventually found my way with the feeding it became a lovely natural and bonding experience. In fact it went so well that I stuck to it until Lily was 18 months old. My endocronologist tried to get me to stop sooner to go back on the medication. I suppose he wanted to keep a closer eye on the tumour. But I wanted to continue for the full first year.
I would have stopped breastfeeding at 12 months as I felt that was the right time for us, however my extreme supply meant I had to go about stopping gradually so I didn’t again get mastitis. We reduced the feeds one at a time, this worked well to wean Lily as well as my boobs! Once we hit 18months it came to a stop and I contacted my consultant to go back on medication.
That’s the story up until the last few years so I will save the rest for the next post. If anyone reading this also has a prolactinoma and wants to talk to someone who is going through a similar thing I would love to hear from you.