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

I’ve always known that I wanted kids. I was a nanny for several years and fell in love with every child I worked with. When I got married at 25, I assembled a timeline: We’d pursue our careers, buy a home, and have kids around the time I turned 30.

Of course, my illnesses got in the way. I have Cushing’s disease and polycystic ovary syndrome (PCOS), both of which cause fertility issues. In 2020, the first time I had Cushing’s, the end of my periods was my first sign of the illness. One day, they just stopped. After taking 30 pregnancy tests, I realized I wasn’t pregnant and that my period wasn’t coming back.

In a matter of hours after I had my pituitary tumor surgically removed, my period returned.

Then, in 2022, I lost my period again — the first and most blatant sign that my Cushing’s disease was back. My doctor helped give me progesterone medications to induce my menstrual cycle, but we only had so much luck. I had irregular periods, and they were light at best. It wasn’t until I had a confirmed recurrence and medical treatment (including ketoconazole, which lowered my cortisol levels) that my period came back fully and continued monthly.

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Our thoughts about children haven’t changed. But I’m disappointed when people ask me if I’m wrong to have children, thinking that I could pass on this illness. Of course, I can’t deny the genetic risks of my having a child: It’s more likely our child would have Cushing’s disease than it would for a family with no history of endocrine disorders.

However, I want to point out two things here. One, people who are completely healthy could have children with Cushing’s or other illnesses. My parents did! Second, if my child were to have Cushing’s disease, I’d be better equipped to handle it than anyone else. I’d know the signs and which doctors to go to. Of course, I wouldn’t wish my disease on my children, but if they ended up with Cushing’s, I’d be their warrior.

And I know that I’d be an incredible parent — not in spite of my illness, but because of it. Cushing’s disease has made me a kinder, more empathetic person. I’m always wondering what other people are going through and giving people the benefit of the doubt. My priorities have shifted, and family and loved ones come first.

My concerns and questions

Having children isn’t necessarily going to be easy, however. Cushing’s patients are more likely to go through miscarriages than their healthy counterparts. Since I’m being treated, however, I could have a relatively normal life and a completely healthy pregnancy.

I’ve tested my fertility hormones, and I’m in a good range, though a little on the higher end of normal. Next month I’m going to see a fertility specialist to better understand my options. My husband and I are considering freezing embryos now so that we can have kids down the line.

I do have a few questions for the specialist. Can I do in vitro fertilization (IVF) while being treated for Cushing’s disease? Will the hormones given to me during IVF treatment contradict the medications that I’m on to lower my cortisol and testosterone? Is it safer for me to wait until after the pituitary tumor is removed, or is it safer now? I’ve already had one tumor removed, and afterward, I was able to get by on minimal medication. I’m not sure what the safest route is for both myself and my future child.

I’m not ready to have a kid just yet. I’m working toward other kinds of health and happiness. My husband and I both want to be further along in our careers, we want that home, and I want to be able to do more physically. I also still deal with extreme fatigue, and I don’t want child care to fall completely on my husband. I’m working with yoga and Pilates to be stronger so that I can carry our child.

If you’re considering your fertility, too, I know it can be intimidating and scary, and trust me, I’m just as scared as you are. I’m at the very beginning of this journey, this new, unknown journey, and I’ll update you and give you specifics so we can learn about this issue together.

And don’t forget: Your illness does not define your worthiness as a parent.

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.