Starting the journey of freezing embryos as someone with Cushing’s

Adjusting my current treatment plan in preparation for IVF

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by Noura Costany |

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I’ve always known that I wanted to have children. However, because of the economy and my current work situation, my husband and I don’t have enough money to have kids right now. Therefore, we’ve made the difficult but exciting decision to begin the process of freezing embryos.

This will require us to undergo in vitro fertilization (IVF), a process in which eggs are collected and fertilized in a lab. The resulting embryos can then be implanted in the uterus or frozen and thawed later, as needed. Freezing our embryos now will help to preserve our fertility for when we’re ready to have children.

I had my first fertility appointment right before Thanksgiving, and about a thousand questions ran through my mind. Would I be able to have children? What would my best option be for building a family? How exactly does IVF work?

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How living with Cushing’s disease affects my wish to be a parent

Cushing’s and fertility

I have Cushing’s disease and polycystic ovary syndrome (PCOS), both of which can affect fertility. In fact, according to an article published in the journal Clinical Endocrinology, PCOS is common in people with Cushing’s. There are a number of overlapping symptoms, such as acne and hair loss, which could explain why Cushing’s is frequently misdiagnosed as PCOS.

I was initially diagnosed with cyclic Cushing’s disease in early 2020, and had surgery several months later to remove a pituitary tumor. Unfortunately, I experienced a recurrence of the disease in 2022, which I’m still working to treat.

Because both tumors caused my period to stop, my fertility doctors are doing a lot of testing to figure out how that’s affected me. I’m still waiting on lab results to determine the levels of my cholesterol, testosterone, and hormones like AMH and DHEA.

My current Cushing’s treatment plan includes the medications ketoconazole, Mounjaro (tirzepatide), and spironolactone, along with many supplements. My biggest fear going into my first fertility appointment was that I’d need to stop all of my medications ahead of the egg extraction. The IVF process will require me to inject a lot of hormones to boost egg development, and because my medications affect my hormone levels, I wasn’t sure if I’d be allowed to continue them.

My doctor confirmed that I’d have to stop taking spironolactone and Mounjaro about two weeks before I begin hormone injections. Luckily, I’ll be able to continue ketoconazole, which is my most important medication.

My doctor also explained that the success of my egg retrieval could be affected by my body mass index (BMI), a ratio of height to weight. Because I’m only 27 and my egg quality is still very good, we’re going to spend the next six months working to lower my BMI before moving forward with the IVF process.

The procedure itself

Doctors may look at the number of antral follicles a person has to get an idea of how many total eggs they have left in their ovaries. On average, people with ovaries who are in their mid-20s to early 30s have about 12-30 antral follicles. I have 45.

This higher number is common in those with PCOS. As my physician explained to me, having more follicles — and likely, more eggs — would actually make it harder for me to conceive naturally. Because I have more than average, there’s a greater chance that my ovaries will release a low-quality egg. IVF will help ensure that the eggs retrieved are high quality.

Fortunately, my doctor believes we’ll be able to retrieve 20-40 eggs through IVF, which will give us a good chance of creating several healthy embryos. I’ll need to start hormone injections on the first day of my period to ensure that the majority of my follicles release an egg during the short retrieval procedure.

I won’t lie to you: I’m nervous! The entire process is intimidating, and there are a lot of steps to take before we can create healthy embryos. Still, it’s exciting, and I’m hopeful the outcome will be positive.

Next steps

For now, I’m focusing on lowering my BMI and getting stronger through yoga and strength-building exercises. My husband and I will reach out to our insurance company to make sure the procedure is covered. We’ll also be doing genetic testing to see if we’re carriers of any recessive genetic diseases.

Fertility is a personal topic, but I hope that sharing my journey helps you to feel more comfortable on your own, whatever it may look like.

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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