A play-by-play of pausing my medications for Cushing’s disease

Freezing embryos requires a pause in Cushing's meds. Here's how it's going

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by Noura Costany |

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My partner and I are knee-deep in the complicated and stressful process of freezing embryos. To have a successful procedure, I had to stop taking all of my medications for Cushing’s disease and other conditions two weeks before starting the fertility medication.

Now I have to take fertility meds for two weeks to prepare my body for egg retrieval. Once the procedure is over, I’ll be able to get back to normal — or at least as normal as I can be.

It’s always amazing how quickly my Cushing’s symptoms return if I stop taking my medications. I’m starting my second week without meds, and the symptoms have hit me like a truck. It’s hard to manage, but I know the end is worth the means.

In the following, I’ll break down how my first week without medications unfolded. Keep in mind that everyone is different, and always consult your healthcare team before starting or stopping medications.

Days 1-3

I was due to have my period the day I stopped taking my meds. With treatment, my periods have been consistent. However, as soon as I paused treatment, the spotting stopped and my period never appeared. Within 48 hours, I had cystic acne. I have terribly large pimples on my chin, around my mouth, and between my eyes.

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Days 4-5

Days four and five made me feel like I had been repeatedly knocked to the ground. My body was sore and aching, and fatigue hit me hard. I was sleeping until 1 or 2 p.m. Of course, this only worsened my insomnia, and I’d go to bed later every night. On day five, I couldn’t fall asleep until 6 a.m.

I also gained 8 pounds in five days, even though I had been maintaining my weight for months. My face looks rounder and more flushed. I’ve felt hotter and spent too many hours with my body in front of the air conditioner.

Days 6-7

The last two days of the week brought back symptoms I’d forgotten about. I have a gnarly rash under my breasts, between my thighs, and on my stomach. I used to get these all the time, but I haven’t had one in over a year. I also started getting ingrown nails again. This problem was terrible a few years back, and its return was disheartening.

The emotional problems started around day six. I starting crying more frequently and felt overwhelmed easily. My heart felt like it was constantly pounding in my chest, so much so that I had to do breathing exercises. I’m trying to manage all of this by taking it easy, watching stupid TV shows, and taking frequent naps.

The adjustment is hard, but it’s also a huge testament to how well my medications work. Luckily, it’s only temporary, and a month from now, I should be back to normal. This is a big decision so that I can potentially have a family someday, and I know that in a few years, I’ll be thankful for enduring this hardship.

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.


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