Got Milk? My year-long journey to a diagnosis of something I’d never heard of….

When I was 21, I had size 34HH boobs (that got your attention didn’t it?!).

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They were ginormous beasts that made every day a nightmare. They started to grown when I was 11 & just didn’t seem to stop! I am only 5’4″ & was once asked by a guy in a bar how I managed to stand up – it was a fair question! I suffered constantly with backache, regularly got pervy comments from men, had a nightmare shopping for clothes that fitted (I was a size 12 on the bottom & a 22 on the top) & had to give up the sports I loved because I was a danger to myself & others & the pain in my back & shoulders for days after was agony – not to mention the bruises & blisters on my shoulders from having them (semi) contained in a sports bra!

Because of all of these things, I decided to have a breast reduction. It was the best thing I ever did. My new D-cup boobs were still not small, but I felt they were in proportion to the rest of my curves & I loved them. The surgeon did explain that this may lead to problems breastfeeding, but at 21 with no boyfriend & thoughts of children a million years away, I considered the implications of this for about a millisecond & signed the consent form.

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Fast forward to December 2010 & after a c-section I am presented with the most beautiful baby boy I have ever seen & I am overwhelmed by the mother of all urges (pun intended) to nurture & protect him. I had mentioned several times through pregnancy that I had had a breast reduction but was keen to breastfeed & my concerns were often swatted away with a ‘don’t you worry’, so – naturally – I thought I didn’t need to worry. The reality was that I was unable to feed Little T myself, as I only got milk in one boob. I did persevere for almost a week trying to do 8 feeds a day on just the one side, but I reached the point where I would wince as soon as the baby was passed to me I’d wince because I knew what he wanted & my lone boob was so sore. Little T didn’t grow as much as we’d hoped & I started to mix feed, which made us all much more relaxed & also meant that Mr T was able to do some of the feeds, which he loved (& so did I, because he inevitably did the last feed before he went to bed & I stole a few more hours sleep!).

I stopped breastfeeding in March the following year, following a particularly painful episode of mastitis & my milk supply seemed to dwindle off completely within about a week.

This was where the wierdness started….

About 2 weeks after my milk supply had totally stopped, it came back. With a vengence. I felt like my body was well & truly sticking 2 fingers up at me because I now had more milk than while I was trying to feed, yet after a month of bottles, Little T wasn’t interested in my offerings any more. I went to see the GP & explained this, plus the fact that I was suffering with constant headaches & mood swings, I’d had no period since giving birth 4 months previously & poor Mr T just didn’t know which wife he was coming home to every evening! The GP advised me to ‘give it time’.

I was told the same thing in May, July & September when I returned, still leaking milk on a daily basis & wearing breastpads, despite now being back at work.

By December, I had had enough & plucked up the courage to ask for a referral about my problem. I felt I had upheld my part of the ‘give it time’ diagnosis & wanted some answers. I was referred to an endocrinologist & they did some blood tests which found that my prolactin level was about a hundred times what is considered the norm for a woman who isn’t pregnant or breastfeeding. He also referred me for an MRI scan to rule out anything serious & said that if the results were normal, he’d see me in the January to discuss options. I had the scan on the Wednesday, the week before Little T’s first birthday & received a phonecall on the Thursday to say could I go in to see the consultant on the Friday for an appointment. This didn’t sound like good news, so I took my mummy with me.

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The doctor told me that the MRI scan had picked up a tumour on my pituitary gland that was about 1cm in dimeter, which was the culprit for all of the symptoms I had been feeling. It is a benign tumour, so not cancerous, which was a massive relief, but all the same I HAD A TUMOUR IN MY BRAIN!!!!! I was prescribed treatment for the tumour & the consultant explained that the aim was to try & shrink it, or keep it the same size. I would have regular blood tests to measure my prolactin levels & a yearly MRI scan to check on the size of the tumour. I would need this treatment for 3 years & during this time, I was not advised to become pregnant, as the data for pregnancy whilst on the treatment was not available & the tumour is likely to double in size – as a minimum – with all the hormonal changes in pregnancy. If I were to have another pregnancy, I would also be closely monitored throughout & put on treatment again as soon as possible afterward, although I take comfort in the fact that I wouldn’t have to go through the 6 months of not knowing like I previously did.

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Despite being struck dumb in my appointment, after leaving the hospital, I had a thousand questions I suddenly thought of & I was lucky to find the Pituitary Foundation website, that answered them all & put me in touch with other people in the same situation as me.

I am now 2 years into my treatment & the blood test results show that my levels of prolactin are being controlled with the medication. I no longer have milk (this stopped within a couple of months of commencing treatment), but I am still experiencing the symptoms of tiredness, irregular cycle, mood swings & weight gain (in my case, this is a difficulty to lose it).

A-newbornI am also finding it hard that the decision to have another baby has been taken out of my hands, as people I met whilst pregnant with Little T, or friends who were experiencing the roller-coaster with me the first time are now becoming pregnant with their second babies. I am over the moon for all of them & know that each case hasn’t been without ups & downs, but I sometimes wish it could be me. I am trying to take an ‘everything happens for a reason’ approach & I am sure I will look back in years to come – either with another child, or with the most amazing boy ever, in Little T & see that all the pieces have fallen into place, but right now I’m finding that a little difficult. This has been one of the reasons for starting ‘Project Happiness‘ as I have so much to be thankful for, but sometimes I can be guilty of focussing on the ‘I have nots’ rather than the ‘I haves’.

There isn’t really a point to this blog, apart from to say that we know our bodies better than anyone else ever could & if you are sure there is something wrong, then push for a second opinion. I wish I had done it sooner & – although I am aware the diagnosis could have been an awful lot worse & I am very lucky – I would be almost 6 months closer to finishing my treatment. Prolactinomas are not very well-known & when I went back to my GP after my MRI, he had to look it up in a book, yet they happen in about every 1 in 10,000 people – so with the estimated population of the UK at 63million, that’s not that uncommon & could affect you or someone you know.

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12 thoughts on “Got Milk? My year-long journey to a diagnosis of something I’d never heard of….

  1. I have exactly the same thing and you are the only person I’ve come across with it too. My case was slightly different though. My cycles stopped completely in 2008 so I went to see my gynaecologist (healthcare is slightly different in Switzerland). I had an ultrasound and blood tests done that day and a few days later, when he saw how incredibly high my prolactin levels were, sent me for an MRI the next week. The consultant went through the scans with me on that day and I was prescribed Dostinex to try and shrink the tumour. It took about a year for the tumour to shrink enough and prolactin levels to decrease so my monthly cycle would return, but it did, and my first son was born in 2010. After breastfeeding him for a year, I went for more tests to see how the tumour was and then went back on medication again to try and shrink it enough for my body to return to relative normal for me to be able to conceive again. And my second son was born earlier this year. Once I’ve finished breastfeeding, I’ll need to go back for tests and probably go back on the medication. But don’t lose hope – I’ve had two very healthy boys in the midst of prolactinoma hell. It can happen of controlled.

  2. Oh my goodness, I couldn’t just read and run. What an ordeal for you. I totally sympathise with the choice of having more children being taken away from you for the time being. In my case it’s due to my other half’s poor health, it really does take some getting used to when your plans get thrown out of the window. So glad the cause was found and it’s treatable. Sending lots of love x

    • It does indeed take a bit of adjusting to when the rug gets pulled from under you, but I hope that we both look back in years to come & say that it all worked out for the best. Sending best wishes to your husband & thank you for taking the time to read & comment.

  3. Me again 🙂 I’ve been thinking about your post all morning and I really can’t believe that the doctors in the UK have discouraged you from getting pregnant when my doctors in Switzerland didn’t think it was a problem whatsoever. I had monthly scans and blood tests with both my boys but nothing beyond that. I wonder why it’s been so different – just checked my notes and my tumour was just 2mm bigger than yours so I would’ve expected the treatment and advice to be the same. It’s so, so odd.

    • Thank you so much for taking the time to write your comment – I am also surprised in the differing advice we have both been given. I am going to speak to my doctor about it during my next appointment. They advised me not to get pregnant, as there isn’t a lot of safety data around babies born whilst on treatment (I’m on Dostinex too). Despite me saying it was fairly common, I haven’t yet met anyone with the same condition either, so it’s good to ‘meet’ you. I wonder if I had it for longer than we realised, as I had previously been diagnosed with PCOS & needed help from metformin to conceive Little T, but I guess I’ll never know for sure. I will let you know how I get on & might be in touch for advice, if you wouldn’t mind? It’s so lovely to hear a good news story & you’ve given me hope of another baby at some point. Thank you.

    • Yup – it literally changed my life & – even with some of the issues that have occurred since – I would make the same decision if I had my time again. Thanks for reading & taking the time to comment.

  4. What an incredible story. Great message about knowing your own body better than doctors. I have been meaning to write a blog about how sometimes you need to stand up to your GP when you are fobbed off with vague answers… I haven’t had an experience as dramatic as yours but as a children’s nurse in a brain tumour unit I see lots of families saying “I wish we’d fought for more tests sooner”. We should all be a bit pushier with our doctors I say!!!
    Best of luck with your treatment! X

    • Thank you. I agree; I have lots of examples where people have been too intimidated by their doctor to ask for a second opinion or further tests. I am actually quite ashamed it took me so long, as I have been known to be roped in by friends to go to medical appointments with them, as I can be quite assertive – clearly this doesn’t apply when it’s for myself! Your job sounds like you see plenty of people much much worse off than me & I thank my lucky stars every day that it didn’t turn out to be any more serious. Thank you for your comment & for taking the time to read – it was lovely to share a review with you yesterday!

  5. Oh my goodness, what a really interesting – and very helpful read. It just shows that issues shouldn’t be ignored as there could be something more to it. This post will definitely help someone else in your position. Thank you for linking to PoCoLo x

  6. Hi… I know I’m a few months late but just googled prolactin levels and up you popped 🙂 I’m currently 33+4 weeks pregnant with my first little boy (yay!!). I was diagnosed with a prolactinoma 4 years ago and took cabergoline… My first fear was that I wouldnt be able to have a baby but my endocrinologist encouraged me to try and just stop taking the medication if I fell pregnant as the risks to the baby weren’t known. I had 2 different consultants tell me this so obviously had no issue at all with following their instruction. It turns out that I actually stopped taking the medication 2 months before I fell pregnant – I’d kind of given up trying to be honest (partners fertility problems, not mine) so just shows it can happen, even when not taking the treatment for it! What I don’t understand currently is that I was told I would need lots of monitoring and be under a consultant but the midwives I’ve seen seem totally oblivious to the problems that can occur and most don’t even know what a prolactinoma is. I’ve had to push and push myself to have my prolactin levels checked to ensure they’re not sky rocketing out of control and had to ask for a phone number to ring the endocrine obstetric team myself before anything was actually done for me. I now have an appointment on Friday so will see what happens then… They better hope things are fine!! I don’t understand how healthcare professionals who need to know about this can just brush over it – I feel like I’ve been let down in a time I just wanted to enjoy. I really hope you’ve managed to get things sorted and are on the way to extending your little family further 🙂 I’d be really interested to hear how things have gone for you. Sorry for the rant!!

    • Hi Michaela,
      I hope all went well for you with the birth of your little boy & you are enjoying motherhood? How did you get on with your prolactinoma & getting the answers you needed? I agree that no one seems to know very much about it & that can be very frustrating! Thankfully, I have a new consultant, who I trust & is lovely, so we’re planning to try for another baby & I feel confident that he will support me through the process & fight for any additional care I may need. I’d never heard of this until my diagnosis, but have now come accross several people who have a prolactinoma (there’s another lady in the comments too) & what strikes me as the most odd is that we all seem to have been given different information, depending on who we’ve seen! Surely there should be one protocol for being pregnant & taking or not taking cabergoline?!
      Thanks for reading & for your comment, but most of all for giving me hope that it can happen, even when the odds seem against it.
      xx

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