Understanding your past care


You may have already had certain types of surgeries or have memories of stays in the hospital.

If you have questions about what happened, ask or write them down for your parents and doctors. They can help you understand what happened, and if they aren’t sure, bring your list of questions to the next visit with your doctor.

Some good questions to ask:

  • When was my condition diagnosed?
  • How many times did I come to the doctor?
  • What treatments have I had? Were they urgently needed for my health or elective (something that you chose that was not medically urgent)?
  • Who can see my medical file in the hospital? Is it available to anyone else?
  • Are there pictures or photos that were taken of me?(If desired) Can I see them?
  • Can I talk to someone one-on-one with my medical records?
  • Who made the decisions about my past care—my doctors or my parents or both? Why was it chosen? What was considered when making that decision?
  • If I feel upset or angry about anything, what can I do? Is it okay to share that with a doctor, if so how?
  • What does this mean about how I take care of my body moving forward?
  • What do I do if I don’t have
    • Gonads?
    • A large vagina or an opening?
    • Sensation in my genitals?
  • What are my current options ?
  • Can I give my files to a researcher or be part of research, if I want to?
  • Do you know if my gonads were able to produce hormones, eggs, or sperm?

There are plenty more questions you can ask – every question is a good one!

Some of us have had very good experiences; others may not have a good experience at all. For them especially, thinking and talking about past care can be hard.

We are thinking about how to develop this section further, acknowledging the past whilst firmly moving forward. If you have other questions you believe can help others, do email us at dsdteens@gmail.com