We have never seen that before….

Do I or don’t I have a condition? — A story of discovery

Christine Penn

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Photo by Emily Morter on Unsplash

Who do you trust? Who do you believe? Am I crazy? Did that really just happen? Why didn’t they tell me when they suspected something? Do I need to find another doctor? Why do I have these problems?

These are just some of the questions you could find yourself asking. And they are going to drive you crazy. And just when you think you have the answer, you and others may start questioning things again.

This is what life with my particular type of DSD has been. That is, if I actually have one. Can’t say that there are not still questions.

Sidebar for those not familiar with the DSD term. It stands for Differences in Sexual Development. A more encompassing term linking in various conditions like Intersex, and more traditional cases like Disorders of Sexual Development, Diverse Sex Development and/or Variations in Sex Characteristics (VSC). Here’s the Wikipedia definition for it.

The medical condition

I seem to have issues with my Adrenal glands not working quite right. Most of these issues fall under a grouping of conditions known as Congenital Adrenal Hyperplasia.

The issues I have had have probably been around since fetal development but was not impactive enough during those times to create any significant issues. (There are still some signs that something weird may have been going on.) So any issues that may have been caused by it had a tendency to get ignored for a long time. History, even longer term, can be very important to consider for a diagnosis in the present day. Some this may have been ignored due to the knowledge at the time that associated these issues as always being accompanied with Cortisol problems, and I didn’t have any. This may have been the reason why they focused on many of the effects it was creating as independent issues.

Looking into it later, the symptoms are very similar and I am frequently confused with having Addison’s disease. But there are a couple of details of that condition that don’t align well with my experience. The one that does better align, is called Isolated 17,20-lyase deficiency (we will refer to this as just “isolated”) and it matches up pretty…

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Christine Penn

Trans woman, parent, cyclist, software engineer, author, chef, and many other things.