Managing the gonads

If your doctor discusses gonad surgery, there may be three types they refer to:

  • A gonad movement surgery (orchidopexy)—this helps to move your gonads so they are easier for you and your doctor to monitor. This mainly applies for guys.
  • A gonad biopsy—taking a small piece of your gonad to see what it looks like close up under a microscope.
  • A gonad removal (k.a. gonadectomy/orchidectomy)—this is removing the gonads entirely.

Just like gonads have risks, so do surgeries. Here are some questions to help you make these decisions:

How would the surgery be done?

  • For instance, is it done with a special telescope (laparoscope) and how big is the cut and where?
  • For some surgeries, cuts are made in the abdomen to reach the testes. In others, cuts are made into the belly-button, the groin, or multiple spots.

What are some immediate risks of surgery?

  • For instance, what are the risks of anesthesia (the medicine that puts you to sleep)? For the cuts, could there be discomfort, scarring, losing blood, infection etc. And, also, how many of these exact surgeries has the doctor performed? Do they have lots of experience? What are potential risks of laparoscopy surgery (which is a type of surgical procedure in which a small incision is made, usually in belly button, through which a viewing tube (laparoscope) is inserted)?

What are some long-term risks of surgery?

  • Are your gonads producing hormones or will they at some point? Will you need to take lifelong hormone therapy? Will you need hormones to start puberty? Could you have scars? Would there be reasons you might regret it later? Is there a lot of research about these risks for people with my condition? Is it possible that my gonads could produce eggs or sperm, either now or in the next 10-15 years with new medical technology?

Is research currently going on that might help me and my doctors make this decision in a few years?

  • Doctors around the world are studying gonads to give us better answers on how helpful they are to our bodies and the risks they have. It takes a long time to do this work, but we believe in just 5-10 years, we will have better information about gonad benefits and risks than we do now. You can ask your doctor about ways you can take part in this kind of research, if you want to.

What about having gonads removed because I’m a girl and don’t like the idea that I have them? Is that a good enough reason to have them removed?

  • For some people, this question is one that comes to mind. The short answer is no—this is not a good enough reason to have the gonads removed. Before making a decision, you need to be fully informed about what your gonads do, what the risks and benefits are of each decision, and what you will need to do if they are removed.
  • If you are struggling with this question and have more questions about it, we recommend talking to your doctor, an experienced psychologist, or even connecting with someone who shares your condition.
  • From Mia:
    • “I’m glad I took time to understand what my gonads do and how they work. It’s easy to think, ‘Oh, they don’t fit because I’m a girl,’ however they are so much more than that. I’ve realized that they have helped me become a girl (I have CAIS) by making testosterone that changes into estrogen in my body. So, my testes are mine—no one can see what kind of tissue they are inside my body the same way no one can see my chromosomes (X &Y) (or my heart) when I walk by. They are part of my body and they have helped me grow as a girl. If I have them removed, I will need hormone therapy for the rest of my life. If I don’t, I will monitor them with blood levels and scans, and I have to think about the risks of having them and how they change over time. To me, those are the important things to consider. ”
  • We would like to add that right now, doctors don’t really know the best ways to scan or monitor the situation. Some use blood tests and MRI imaging, but there is no perfect way of monitoring these risks yet. However, doctors and researchers are working on it, which is good news for people who are choosing to maintain the gonads.

What if I’m a guy and my gonads are not visible or touchable?

  • Gonads (a.k.a. testes, balls, testicles) usually drop into the scrotum just before birth. Sometimes one or both testes don’t drop straight away and may need some surgical help (orchidopexy) when they are still located in the belly (abdomen) or groin area (inguinal area). That being said, some guys only have one gonad for lots of reasons (cancer, injury, born with just one, etc.)

Get to know how your gonads feel, so that you can know if anything is unusual

  • They should be smooth and soft, like a hard-boiled egg without the shell on. At the back you’ll feel the epididymis (it will feel kind of lumpy.) Do this after a shower when your balls are hanging lower. If you find any small lumps on your balls or if one of them has got noticeably bigger or heavier then it’s a good idea to show a doctor.
  • For some guys who have a gonad removed, doctors can put silicone balls in the scrotum so it can look the same as before, if you want.

Self-checking touchable testes