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.)
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.