I Have a Prolactinoma

prolactinoma

About ten years ago, I woke up with a wet spot on my shirt.

My hubby actually noticed it first.

I had just sat up in bed when he pointed and said “What’s on your shirt?”

I looked down to see a wet, yellowish circle exactly over my right breast.

“Huh”, I said. “That’s strange.”

That was the extent of my thought process concerning the spot.

It continued to happen over the next few months, but I was dealing with a few other health issues at the time and just didn’t think too much of it.

(Note to self: if you wake up with a wet shirt for no reason, maybe tell your doctor about it.)

Around that time I was at my OBGYN for a regular follow-up appointment. After going through my history and measurements, she asked if there was anything else she should know about.

Almost in passing, I mentioned the strange wet spots on my shirt.

And that’s when I found out I most likely had a small tumor in my brain.

That wasn’t exactly what I expected to hear.

My doctor wanted to do some blood work to confirm her suspicions. When my results came back, I found out that my prolactin levels were 99 ng/mL. Normal is under 29.

I had a brain MRI to confirm what the doctor already knew.

I had a small, benign tumor called a prolactinoma on my pituitary gland. It was causing my prolactin levels to skyrocket, which was then making my body lactate.

While it’s awesome to lactate while you are breastfeeding, it’s a little disconcerting when you are not.

The doctor explained that the only treatment was medication, which had some nasty side effects. She made it sound like it was no big deal, and the only real issue was whether I wanted to live with the lactation or not.

I didn’t want to go straight to medication, so I decided to wait it out and try a few other things. I went to regular acupuncture appointments and really changed my diet to make sure I was as healthy as possible.

The lactation got a little better, and I thought I was all good.

So I went off the pill.

With my endometriosis diagnosis and now the prolactinoma, I felt like my reproductive system was in a whirlwind. I had been on the pill for years, and made my own decision to just get back to status quo and see what my body was like without the added hormones.

Then I didn’t get my period.

For two years.

It was during this time I realized what no one had previously told me about a prolactinoma. It can severely affect your fertility and reproductive hormones.

When your prolactin is too high, it decreases the levels of other sex hormones, such as estrogen.

You need estrogen to ovulate and have a period and eventually get pregnant.

This is why breastfeeding women have a lower rate of pregnancy. Their prolactin is high due to milk production and they (usually) don’t ovulate.

I don’t know why this wasn’t brought up to me originally, except that I had just had surgery for the endometriosis and I really wasn’t in to the medication. Maybe I just missed it or maybe I thought it was no big deal.

I don’t really know.

I just know that I finally gave in and decided the prolactinoma was one thing I just couldn’t heal naturally.

I saw a reproductive endocrinologist who ordered another brain MRI and blood work. He proceeded to put me on Cabergoline and sent me on my way.

I finally got my period back after about 8-12 months on the medication. I stayed on the medicine until I personally chose to take myself off when we started trying to get pregnant.

(Please note that many doctors recommend you stay on your prolactinoma medication when trying to conceive. I am only telling you what I chose to do just from a personal standpoint. I might make a different choice once we are pregnant again. Please consult with your doctor if you are in this situation.)

prolactinoma

I got pregnant after five months and didn’t see my endocrinologist again.

I nursed our daughter for 16 months and loved it.

I was sitting at my computer a few months after I weaned her and I felt a familiar, burning “let down” feeling. I looked down and my nipple was leaking.

I was afraid I knew exactly what it was.

I had my prolactin levels checked by my new doctor and, while not nearly as high as they had been originally, they were higher than the average again.

We had just started trying to conceive baby #2 at that time, and I knew the drill at this point. I went back on the medication (my doctor put me on Bromocriptine this time, which I prefer).

It’s been 8 months back on the meds, and my prolactin levels are again within normal limits. My symptoms have normalized and, other than taking medication every night, I would have no idea that I have a little tumor in the middle of my brain.

While prolactinomas aren’t very common, they also aren’t that rare. I personally had never heard of it before I was diagnosed, but after researching and talking about it, I’ve found there are many other women who suffer from the same thing!

If you are one of those women, OR if you simply have some funny things going on with your hormones, here is my advice to help you during a confusing time…

My Prolactinoma and Hormone Guide

 

Get off the pill.
I am not your doctor and I would never presume to give you medical advice. This is a personal choice and one you definitely want to discuss with your physician. That being said, I personally would never have known the extent of my issues if I hadn’t gone off the pill. The pill was making me have a “fake” period every month despite the fact that I wasn’t ovulating. It was completely masking the major red flag that would have told me I had a problem and could have led to the diagnoses of my tumor sooner.
After going off the pill, it then took me two years to get my period back. Thank goodness we weren’t in a hurry to have kids! I have endometriosis and every doctor says to go on the pill to help with symptoms, but I knew in my gut it wasn’t right for me. You have to make your own choices, and going off the pill was the right one for me.

Talk to your doctor
I should have known that leaking nipples weren’t exactly normal. I should have told my doctor sooner. I just didn’t. If you are experiencing any symptoms that seem strange to you, chat with your doctor about it. If you don’t have a doctor you like, find one. If you want your blood work tested, ask. Be your own advocate and don’t stop until you explore your options and get some answers.

The medication isn’t that bad
I somehow feel like a failure when I have to go on medication. I feel like I should have been able to heal myself more naturally or do more to create health in my body.
That is completely silly sometimes!
In this situation, medication was the only answer. While I’m glad I did the natural route first, I know it was the meds that finally regulated my hormones in this case.
There are two major medications they use to treat prolactinomas: Cabergoline and Bromocriptine. Cabergoline is taken twice a week before bed, and Bromocriptine is taken every night before bed. While I liked only taking the meds twice a week, I sometimes had problems remembering what day I was on and the side effects were harder for me. I did much better on the Bromocriptine.
The first few weeks are the hardest as your body adjusts. After the first month back on the medication, I have hardly noticed any side effects.
In general, common symptoms you can expect are sleepiness, a stuffy nose, dizziness and some nausea.

Unbalanced hormones can affect more than your fertility
A common theme I heard while looking at treatments for my prolactinoma was that many women don’t do anything if they have no desire to have kids.
That idea follows the premise that balanced hormones only affect our fertility, which is wrong in my opinion.
Our hormones affect many aspects of our health!
For example, when you have too little estrogen, your body is at a higher risk for osteoporosis. I was told to take extra calcium to help prevent this in the future.
Don’t ignore hormone or menstruation issues just because you don’t think you want to have kids. There are many other issues at play.

It’s not the end of the world
It can be kind of scary to be told you have a small tumor in your brain, but, ultimately, it is usually very treatable! I have an awareness of it, but I really don’t think about it most of the time. It doesn’t limit anything I do or any activities I enjoy. Would I rather not have a prolactinoma? Of course. Do I let it bother me or get in the way of my life? No way.

I hope this helps some of you out there dealing with some of the issues I’ve dealt with in the past! If you want to know more about how I improved my own health and was able to have a beautiful daughter naturally even with a prolactinoma and endometriosis, click here for my free video series.

Remember, you are in charge of your own health! No one else is. Love yourself enough to take control and search until you find what works best for you.

About Jessica

Jessica Valant, MSPT, PMA-CPT, is a mom, wife, business owner, licensed physical therapist and certified Pilates instructor. She has been practicing for over 15 years, and has a passion for spreading the joy in a Pilates lifestyle! She teaches online workouts and workshops for students and professionals in the Pilates and PT industries.

11 comments on “I Have a Prolactinoma

  1. Thank you for sharing you story! I also have a prolactinoma. I’ve been on bromocryptine nightly for 11 months and the tumour hasn’t changed size . Discouraging. The fatigue and nausea side effects of bromocryptine are pretty brutal but it doesn’t stop my normal activities and workouts. But I have stopped drinking any alcohol because a sip of wine makes me feel like I tried to party like a university student again! Have you tried any other methods to reduce the tumour size? I just started doing some searching for alternatives. Thanks

    • Alison,
      I’m sorry about your prolactinoma and that you are having tough side effects! I have tried acupuncture specifically for the tumor. While I love acupuncture and think it helped me in different areas, I’m not sure if it worked for me specifically for the tumor. It’s worth trying! I also really committed to Pilates and yoga and eating clean during that time, which I’m sure helped as well. Overall, though, I do think it’s the medicine that finally did it. I have a microprolactinoma, which means it’s small. I don’t know about the size changing honestly, as I always just look at what my prolactin levels are.
      I hope that helps and good luck!

  2. Thanks for this post, particularly the part about the pill. I was on the pill and then chose to go off it 8 years ago and promptly stopped having my period (still haven’t had it in 8years). I researched online and determined I had a prolactinoma and then it was medically confirmed. I always knew that the birth control was part of the problem and when they wanted to put me back on it I didn’t do it. It is hard though, to find anybody who draws a link between the birth control and the prolactinoma.
    At any rate, my brief story: Cabergoline didn’t work for me and the side effects were horrible, I finally got the surgery last June and it went well although there is a bit of tumour left. I’ve read in a few places about Frankincense essential oil working to lower prolactin levels and I am planning to try that next! Along with juicing and clean diet and meditation/visualizations.

    • Thank you for sharing your story! It sounds like you are very in tune with your body and you are doing the right things for you, which is great. I used Frankincense oil for a while but I hadn’t heard about the connection with the prolactinoma. That’s interesting! Are you taking it orally or just using a diffuser?

      • Jessica, I have been using the Frankincense oil orally. I put 2-3 drops on my tongue 2 or 3 times per per day. Sometimes I also rub it on my ears.
        Now, my prolactin levels had either been going up or staying about the same for a few years on and off medication, until recently since I’ve been taking the Frankincense they went down by about 50, and I just found out today they went down again by about 100! I can’t say for sure exactly what caused this, but my feeling is that the Frankincense has something to do with it! When I take the Frankincense I often get a bit of a “tumor headache” and feel some shifts/changes that seem associated directly with when I take the oil. The other changes that I’ve made recently in my lifestyle have been a very clean healthy diet with lots of fresh vegetables.

        I read through my previous comment, and I wanted to clarify that Cabergoline did not work for me, but that when you compare its side effects to that of many other drugs it shouldn’t be called “horrible”. It definitely seems to work for some people, and I definitely don’t want to scare anyone off if they want to try it.

        My last piece of advice for anyone reading this is: take charge of your own healthcare! Since the beginning, I have been researching everything about prolactinomas and its various treatments and cures. Just because someone is a doctor, doesn’t mean their recommendations should go unquestioned. I have had many really helpful doctors who I am so grateful for, but I have also received recommendations (“go back on the pill” for example) that I did not take. Particularly in the case of prolactinomas, many doctors have little to no experience with them and primary care physicians sometimes will know less than you do about it. So don’t hesitate to do research yourself and weigh that up wth what is being recommended. Be your own health advocate!

      • Alanna – Thank you for all of the advice and sharing your story! You are exactly right that taking charge of your own healthcare is the most important thing you can do sometimes 🙂 xoxo

  3. Thanks so much for your story. I was on the pill for 10 years and stopped it when I wasn’t even getting a ‘period’ when on the sugar pills. My AMH levels were high and I had cysts on my ovaries and was told I had PCOS, even though I had no symptoms other than cysts (which apparently lots of women have anyway!). 2 years of fertility treatments including IVF (which unfortunately resulted in 2 miscarriages – completely random & bad luck). A month after my curette I had an appointment with my gynaecologist and mentioned the wet nipples in passing. I honestly didn’t realise it wasn’t normal! And can’t remember a time when they didn’t leak. I finally got diagnosed with a prolactinoma too! Have been on cabergoline for 2 months now and can almost feel my body ‘waking up’. Praying for a cycle to start, although the side effects of headaches and nausea aren’t much fun. No worse than all the other fertility medication I’ve previously been on though.
    Thank you for sharing your story, I’ve never shared mine other than with family and close friends. Good luck for baby #2, I know my baby #1 isn’t far away 🙂

    • Thank you for sharing your story with me! I am sending you love and good wishes that you finally have some answers and the right treatment! Keep me updated 🙂 xoxo

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  5. Hi Jessica,
    I know this is an old post but I came across it in my research. I was diagnosed with a Prolactinoma (7mm) three weeks ago. I also have endometriosis which was diagnosed 12 years ago. I am 30 years old and was married 2 years ago. It’s tough when all your friends are having children and you’re trying to deal with these issues. I am very happy to hear that everything worked out for you and that you have beautiful children. I have started cabergoline and I am hoping that will fix everything up. Thank you for sharing your story – I really do appreciate it.

  6. Hi there,
    I had an operation to remove a prolactinoma 5 years ago as my tumor was resistance to the medication and my prolactinoma levels were almost 15,000 ng/ml at the time. After the operation I was told some of the tumor was left behind so even thought my prolactin had mproved, went down to almost 5000 but it was still really high 🙁 anyways, my prolactina hasnt change that much ever since and I am not taking anything at the moment, not cabergoline or bromocriptine, my doctor has recommended me to have another operation but I don’t really want to have another one. I haven’t had my period for 10 years, a side effect of the tumor. so a month ago my doctor recommended me to start HRT but I wasn’t sure about it, so I haven’t actually started. Anyways long story short 6 months ago I went to a dietitian in Harley street, wanted to loose some weight, lost 15kg, I started taking NAC and fish oil (changed it to omega 3,6 and 9 in the last month) I have also been using jasmine oil with lavander oil every night on my body for the last 3 months and last Friday I got my period back, after 10 years!! I do not know if the supplements are helping or the oils but I hope this is a good sign of an improvement and Iam really looking forward to see my specialist in two months and tell him what has happened.

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