1. Have you been diagnosed with a women’s health condition? If so, how did you know something wasn’t right, and what was your journey like to get answers?

I questioned for a while whether to fill this in because it’s not a female specific diagnosis.

I was diagnosed with a Prolactinoma about 3 ½ years ago. My understanding is that it can affect anyone. It’s a tumor on your Pituitary Gland that produces excess amounts of prolactin - the hormone that is usually released after giving birth to produce breast milk. For some people they can experience lactation and it can affect eyesight because of its position.

I was on the OCP at the time this likely started, with very light and then no bleed. I also gained a lot of weight, turns out my body was storing fat to use to produce milk, but because I wasn’t, it had nowhere to go so I just kept gaining. I also had really sore boobs, like waking me up in the middle of the night if I rolled over type of pain. 

I thought it was strange but not that something serious was going on and I was working really hard to lose the weight alongside a professional, but it just kept going up. Unfortunately, at this time I had some really disheartening comments from professionals - I was told I must have been doing the exercise/food plan wrong, when I went to a doctor about the weight gain and how it was affecting my mood, I thought I was onto something when she took bloods, but the follow up she didn’t remember why I was there and just told me I had to lose weight.

By this time I had also come off the pill and my period hadn’t returned. It was a Naturopath who said if it wasn’t back in X amount of time I needed hormone specific bloods done. Nine months after it hadn’t come back, I went to a different doctor who finally took me seriously. He did the bloods and called me the next day to say I needed more bloods done the following morning and would require hospital level care. My prolactin levels were through the roof. Next step was an MRI to confirm the prolactinoma, then medication.

When I was diagnosed it was 9mm, I was told if it had been 10mm they would have had to operate to remove it. The medication gradually shrinks it, but I will have to monitor symptoms and continue testing forever, as it can come back.

The high prolactin was also suppressing other hormones, I was put back on the pill to allegedly help increase them and had to have some other testing done. I was infertile until the medication was able to reduce the prolactin levels and advised that I shouldn’t fall pregnant until it had shrunk, as you have to stop the medication.

2. What was your diagnosis experience like?

Incredibly frustrating. There were many tears.

The prolactinoma was only diagnosed because I happened to start a new job and the following week they had a Naturopath coming in. The timing for me was perfect as I had just had those blood tests done and that really confronting doctor visit where I was just told to lose weight and my bloods were fine. The Naturopath looked at my bloods, and immediately said ‘you must feel awful, you must be so tired and mustn’t be able to concentrate on anything for more than 10 seconds’. I felt so seen by her and she was an incredible person to have in my corner throughout this journey.

I also had a GP come recommended as he specialised in women's health - without these two health professionals I feel like I never would have got my diagnosis.

There was also a bit of fear - being called by the doctor saying I urgently needed more bloods, and required hospital level care and when I saw the endocrinologist they told me not to go on a South Island road trip because I needed to be near the hospital. I still went and have never been hospitalized because of it.

3. How has your condition changed your daily life?

For the prolactinoma, I take one pill, once a week. Initially this absolutely wrecked me the next day - I felt like a hormonal, exhausted zombie and would cry uncontrollably for no reason. Thankfully this didn’t last long and my body has adjusted to it. I get yearly MRIs to monitor [fun for someone who’s claustrophobic] and regular blood tests. 

I have recently discovered some other issues I have are because of my estrogen being so low, and that these should have been treated better at the time of diagnosis to avoid ending up where I am now, but working on this now and otherwise, everything feels like it is more or less back to normal.

4. What symptoms made you think something wasn’t right with your body?

The weight was the biggest thing at the time - mentally I was so low because it wouldn’t budge and I was working SO hard to shift it with no results. Once the medication started doing its thing, I dropped 12kgs and was back to a comfortable weight for my body. 

Constantly really sore boobs was a hard one to manage too because it was an additional pain when trying to sleep and exercise, as well as just generally feeling pretty average and low energy. I had thought it was from being on the OCP for so long. I don’t think I would have found it if I hadn’t come off the pill.

5. Have you tried anything that has helped you manage your symptoms?

Most of my symptoms for the prolactinoma are managed by medication however I struggle with other health issues and often fatigued. Starting reformer pilates has been a game changer for me for low impact movement, plus regular movement in fresh air.

6. What’s one thing you wish more people understood about women’s health?

That it’s just so complex and everyone is going through different things. As well as that you know yourself best and if something doesn’t feel right, you have to advocate for yourself. If one health professional dismisses you, try another.

7. If you could tell younger you one thing about your body, what would it be?

That you don’t have to love it all the time - I think there is a big push and almost a pressure to love your body no matter what. But I think it’s more about appreciating it and everything it does for you and allows you to do. But at the same time you can go through things that don’t feel fair and you’re allowed to feel those things.

8. When your body feels hard to live in, how do you take care of yourself?

Definitely still working on this one - but know that a walk [especially near water] will always help.