We, a nurse, psychologist, social scientist, and some of those we have met on our journey working together are also keen to learn about what ‘you’ feel is important about CAH. We want to be able to share what we learn or hear so that we can look at ways to help future scientists, doctors, nurses and researchers understand wellness and CAH.

One of the questions we were asked was about the need for genital examination or surgery in childhood when a girl has a urogenital sinus. To help us think about this question more, we looked at the research or study papers. What we found was that there was no evidence that could give a clear answer. There are risks in surgery. Consent and surgical decision making are complex ideas to talk about; and your input is very important.

Some doctors shared stories about how women had been having periods naturally, without surgery. This means that examinations and surgery could wait until an individual could be informed and then decide. We have learned from listening to people that understanding ‘your own body’ is very essential; sharing this information with your doctor is important. Listening to a few doctors, they shared stories of the risk in not knowing your body. They explained that not understanding whether you have a urogenital sinus may mean that having penetrative sex could be impossible, painful, or cause trauma to your body – in this case other sexual acts might instead be more pleasurable or certain interventions might be useful.

We also read about how to determine when having a period could be a problem. If the blood cannot get out of your body because the passage is too narrow or the join between the vaginal and urethra (wee passage) blocked, then you could have symptoms of a condition called hematcolpos. This is when the vagina fills with blood during your period cycle; it can also happen in girls without CAH as a result of a range of other conditions. The signs and symptoms can vary but include abdominal pain, bloating, and not getting your periods. It is important to be able to talk about your periods with your doctor or nurse, as they can share information with you about any test or treatments that may help.

We spoke to some Canadian women about their decision to have surgery to allow them to use tampons when playing sports, such as hockey. A few of these women talked about how making choices about their body was linked to having sex and babies. It’s an individual choice and having someone to talk to about it is very important.

It happens in girls as part of development when the urinary (wee) and reproductive (vagina) parts stay joined together rather than becoming separated. So, where girls would have 3 openings one for urine (wee), one for stool (poop), and one for period (blood) there are only two. There are many reasons why this can happen; CAH is just one of them and it does not happen in all girls with CAH. The join between the urethra and vagina can be:

• Low – near to where the openings are commonly;
• Mid – up to 2cm away from where the openings are commonly; or
• High – more than 2cm away where the openings are commonly.

A physical exam when you were a new born may mean you doctor and parents know the answer. You should talk to your doctor about other tests and what you want to agree to. Sometimes younger girls may have had a cystoscopy of vaginoscopy which is when you have a general anaesthetic (sleep in a hospital) and the doctors uses a small camera to look inside the one opening to see where the join is. Asking the doctor and your care giver can be helpful in understanding ‘how’ your body was made.