How does Cushing’s disease affect the menstrual cycle?

Cushing’s disease significantly affects the menstrual cycle. When people hear that statement, they often think that the disease affects only periods, but it actually alters every part of the menstrual cycle.

The first sign of Cushing’s disease for me was a complete loss of my period. One month, I’d have a completely normal cycle, and the next, it was just gone. This first happened in 2018 and repeated four years later, when I realized that my Cushing’s disease had returned.

The loss of a period is often written off, especially when it’s sudden. Common advice might be to test for pregnancy, reduce stress, or work out more (or less, depending on the doctor). I saw multiple doctors about my missing period and consistently received bad advice, mostly because they didn’t view it as a symptom of a bigger issue.

Everyone’s hormones and cycles are different, but the following is how Cushing’s changed mine.

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The menses phase: Cushing’s disease completely eliminated this phase for me. There was no bleeding. When I’m taking medication, though, the menses phase returns. However, a previous lack of periods can cause a lot of buildup. I also have thicker uterine walls than normal and calcified fibroids, so while I do bleed while on medication, it’s much thicker, heavier, and more painful than before. I need heavy-duty prescription painkillers, and my period can leave me bedridden for a couple days.

My period is incredibly fickle. For example, I’m in the process of going back on my meds after I recently had a baby. Before my pregnancy, when I was taking three cortisol-reducing pills a day, I didn’t get my period for three months. But when I increased the dose to four pills a day, I got my period — an hour and a half later. This shows how deeply this disease affects my cycle.

The follicular phase: This phase increases estrogen and testosterone levels. Since I already have incredibly high testosterone levels, this phase causes me acne and other skin problems, as well as increased hair loss and irritability. I take extra care of myself during this phase by using face masks and hair oil to try to counteract how crappy I feel. I also tend to have insomnia and headaches, though not as much as I do during the menses phase.

Ovulation: When I’m off my meds, I don’t ovulate properly. I discovered this while undergoing in vitro fertilization, as I needed to ovulate in order to start the cycle, but never did. I had to jumpstart it with a shot.

This part of the cycle is the most difficult to keep tabs on because it’s less visual. It’s not clear if I occasionally ovulate or never do. It’s also unclear whether the meds fix it entirely. I do notice changes in discharge whether I’m on or off medication, but without having frequent ultrasounds, it’s pretty hard to track.

I have minor symptoms during this part of the cycle, including getting hot and sometimes having to sleep with ice packs.

The luteal phase: I love this phase when I’m medicated, because it’s the one week when my hormones work in my favor. My high testosterone levels drop, and my skin clears. My cortisol levels can also decrease, which helps me sleep better. This is ironic to me because I always hear people complaining about how fatigued they are during this phase. For me, it’s the opposite: I feel more energized.

When I’m unmedicated, these fluctuations can be pretty extreme, and sometimes this phase doesn’t even happen, depending on how long I’ve gone without a period.

I think it’s important to talk about how deeply chronic illness affects a person’s menstrual cycle, because it’s a topic I don’t see discussed nearly enough.

You can also follow my journey on TikTok and YouTube.

Note: Cushing’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cushing’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Cushing’s.