This is hard for me to talk about but I think it is important to be completely honest about this so people can realize that difficult topics to discuss - such as libido and periods - can actually be an indication of underlying issues.
Retrospectively, I think the first indication that something was wrong was a decrease in my libido about a year before diagnosis. It was gradual and subtle at first, so it wasn't really something I noticed. I could also often play it off as being too tired or too busy. It got to the point where I did not even want to be hugged or touched at all. I am so thankful for Rob at least trying to understand even though physical intimacy in our relationship became almost non-existent.
Beginning in June 2015, I started having very strange menstrual issues including: extremely bad cramps (from not usually having any), sore spots under my arms the week before getting my period, late/early periods, and spotting between periods that progressed to the point where it felt like I was having a period almost every two weeks.
Another issue that began in summer of 2015 was an increased sensitivity to bright light. I had noticed several years ago that I could was sometimes bothered by bright lights, but what I was experiencing was quite intensified. If I didn't wear sunglasses outside, I would get terrible pain directly behind my eyes. I can remember one day, while walking my dogs, the pain became so extreme that I had to walk with one eye shut or my eyes squinting almost to the point of both being closed until I got home.
The final issue I noticed was an increased frequency and severity in headaches and migraines. Although I have been prone to headaches for as long as I can remember and have been dealing with occasional migraines since 2009, this was something else. Some headaches were lasting weeks at a time and I began having migraines multiple times a month.
Even with everything going on, the issue that eventually led to my diagnosis of a pituitary tumour was the irregular periods. The thing with this issue that was so concerning is that I have been on birth control for 9 years, on and off, and this has meant that my periods have been regular that entire time. To have periods become so inconsistent while I was still on birth control was odd, so I mentioned it to my family physician when I had my physical exam in October 2015. He decided to do some blood work to check out my hormone levels and we had a discussion about me going off my birth control (the brand I had been taking had been switched to another brand name so he thought that maybe a slight change could be contributing) and I went on my way.
Two weeks later, I returned for a follow up to my physical and while going through my blood work results my physician noted that my prolactin was high. This was odd because, as I found out after doing my own research, high prolactin is usually only naturally present in pregnant women (although birth control pills and stress can moderately raise the level as well). Other causes are usually health issues such as tumours in different parts of the body.
Anyways, my physician said that this was abnormal and we decided to do a repeat blood work in a couple weeks time in order to give my body a chance to react to being off birth control. When that came back abnormal, my physician ordered a brain MRI in order to assess my pituitary gland which is what produces prolactin.
On Friday November 27, 2015 I received a call at work from the MRI department asking if I was able to run over to get my MRI as they had had a cancellation (plus side of working at the cancer center right next to the hospital and having super accommodating coworkers and manager). So I ran over, signed the consent forms required, had an IV inserted to allow a contrast to be injected, and tolerated the extremely loud, extremely long MRI scan. This was difficult since I am claustrophobic. Two hours later I went back to work.
I was only there for an hour when I received a call from my physician's clinic asking if I would be able to go in to see my doctor on Monday November 30 at 8:00 AM. They didn't say what it was about but I knew in that moment that something had been found on the MRI.
After an impossibly excruciating weekend of waiting, Rob and I went to meet with my physician. My doctor has an incredibly strange way of discussing findings of test results. He tends to talk a lot and basically rehashed all the tests I had had and his reasoning behind ordering each one. At some point he said that he had ordered the MRI to determine if there was an issue with my pituitary gland and sure enough there was a tumour found on the scan. He gave me a copy of the MRI report, mentioned that he was referring me to a neuro-surgeon, told me a story about how he had referred a similar situation to the same surgeon and the timeline for surgery for that patient, offered to write me a note to be off work if needed, and sent me on my way to get more blood tests done to measure all the hormones produced and secreted by the pituitary gland.
So that was it. I have a pituitary tumour - more specifically a suspected pituitary macroadenoma (these tumours are considered macroadenoma if they measure more than 1 cm and mine was 8mm x 12mm x 18mm). I had sort of prepared myself for this moment by doing research on all potential causes of high prolactin, but nothing could really make me ready for the realization that my life was about to completely change.
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