Medical
What does consent look like in a medical setting?
Often, infants and young children are diagnosed with AIS, and consent is not possible, and thus left up to the parent/guardian. Parents rely on information given to them by doctors when they are faced with medical decisions about their children. It is advisable for parents to also seek information from other parents through support groups such as InterConnect.
When you are diagnosed with AIS, you will probably start seeing different doctors. Some of these doctors may be specialist in their field, but many visits will likely be intimidating and frustrating encounters.
Consent, in short, means you grant permission for something. This includes any time you seek any kind of medical care. If you are uncomfortable with a situation, or if you were comfortable, but have changed your mind, you always have the right to say no and refuse. Let’s look at a few examples where consent is especially important in a medical setting:
You do not have to be naked for the exam.
You do not have to be naked for the consultation.
You do not have to have the surgery.
You can say no to an appointment you do not want.
You can say no to a referral you do not want.
You can say no to a medicine you do not want.
You can say no to a surgery scheduled with or without your permission.
You can disagree with a medical decision made by your healthcare provider.
You do not have to have additional residents and medical students in the exam room with the doctor.
You are a person, and not an example in a text book.
Every one of the things above have happened to me. You do not have to let them happen to you. If it does, please remember you can report the healthcare provider for their actions. Reporting a provider is not anti-doctor. Fetishizing patients with AIS because we are rare is anti-patient and provides us with a sub-par level of care.
What does ambiguous genital mean?
Please note that “ambiguous” is triggering to many intersex folks, and that all genitals have variations and differences. Instead let’s ask, where on the sex spectrum do you lie? Yes, SEX IS A SPECTRUM. Gender is a spectrum as well, but sex, biological sex, is also a spectrum.
Society would have us believe in the binary, but in reality there’s all kinds of variation in-between. Naturally occurring, beautiful, and unique God given variation. You see, there’s no hard stop between male and female, and there’s infinite steps between where the penis and clitoris change shape, and the urethra move location. The labia and the scrotum are also the same tissue; that’s why there’s a little scar on the scrotum (source) - that’s where the labia came together and fused (source).
Ambiguous genitalia is just what happens when this transformation between what’s typically thought of as female and what’s typically thought of as male is paused somewhere in-between. For AIS, this happens when the body partially understands Androgens, or male hormones. If your body understand androgens only a little, you’re on the slider on the female side. If your body understands androgens a lot more, you’re on the slider, but more on the male side. Maybe you’re right down the middle, and that’s great too! (source)
People like to categorize everything (source). Good and bad, left or right, and male and female. Well, the word simply doesn’t work that way, and the human body CERTAINLY doesn’t conform to labels just because the human mind wants it to. Don’t ever let anyone give you grief because you defy fitting neatly into a category. That just makes you real, and wonderful, and uniquely you. Be proud of who you are; I know I am proud of who you are.
What is an inguinal hernia?
We with AIS have a higher risk of inguinal canal hernias in our lower pelvic region. That’s because our gonads have a bad habit of dropping in unannounced.
If this happens, often a gonadectomy will be performed at the same time to fix the inguinal canal hernia and remove the gonad.
It is unusual for phenotypically female infants and young girls to get inguinal hernias, and, in addition to other factors, is often how AIS can be diagnosed before puberty. (source). These hernias often lead to early, or unnecessary gonadectomies (source).
What is a gonadectomy?
That is when the gonads (testes) are removed from the pelvis.
Ok, but why? Why would I need to get a gonadectomy? I asked my doctors the same question, and this is what they told me:
The testes are located in the lower pelvic floor in the inguinal canal. The testes are meant to drop, but instead are kept under constant pressure in the canal, and that pressure makes a higher risk for cancer. Thus, the recommendation is to remove them, usually by a urologist.
The current thinking (2021) is to remove the gonads after puberty, and then start hormone (estrogen) replacement therapy. If you’d like to keep your gonads, then the recommendation is to do bi-annual screenings. Source . For the screenings, researchers recommend ultrasounds. I decided not to do the gonadectomy, and I’ve never had luck finding my gonads with ultrasounds, but I’ve had good luck with MRIs.
Personal Thoughts on Living with CAIS and Gonadectomies:
I am strongly against performing gonadectomies on an infant, on a child, or on an adult, regardless of the presencene of an inguinal hernia as long as there is no tumor growth on the testes.
Too many people in the Androgen Insensitivity community have had orchidectomies performed on them as children, without proper consent, and have been asked to make due with hormone replacement for the rest of their lives. The gonads that were removed were healthy and not cancerous, and could have remained and have been monitored for tumor development. It is my personal belief that gonadectomies are a sex normalization surgery, and the cancer risk is an excuse for the surgery.
Additionally, osteopenia has been a known side effect of having AIS since the 1990s (source), but there is no reason the testes need to be removed to take estrogen.
What is a Vaginoplasty
This is a surgery to construct a vaginal canal.
This surgery often involves taking skin from other parts of the body, such as the hip, thigh, or penis (if available), and uses that tissue to form a vaginal canal. It includes dilation post-operation. source
What is Dilation
Dilation is the process of using forms to slowly increase the length of the vagina.
To begin dilation, you will need to meet with a medical professional and acquire a set of dilators. These should range in sizes from tall and skinny, to short and fat. Under medical guidance, and using lots of lubrication, insert these dilators into the vaginal canal to stretch and extend the vaginal canal until it’s the desired length and width.
This process shouldn’t be painful. It does take a very long time, and if rushed, it can be painful and extremely frustrating. That being said, the vaginal tissue, no matter how small it is when it starts, is very stretchy, so over time it does begin to change shape and show progress. For more tips, please see the Love section.
What are my risks for cancer?
There are two cancer risks to worry about with AIS. A tumor developing in the underdeveloped gonads, and breast cancer if you are on hormone therapy.
For people with AIS, the current recommendation is to remove the gonads after puberty, or to leave them alone and monitor them bi-annualy with ultrasounds or MRIs. (Source)
For the breast cancer risks associated with using hormone replacement therapy, please refer to this resource here: https://www.breastcancer.org/risk/factors/hrt
What are my risks for Osteoporosis?
I don’t know. It is subjective on when and if you started hormone replacement therapy with estrogen.
This is an important topic to discuss with your primary care doctor or your endocrinologist.
I can, though, tell you about my use case. Men use testosterone for bone density and women use estrogen for bone density. Because I have AIS, my body doesn’t understand testosterone, and I have low, for a woman, levels of estrogen (I am not on hormone (estrogen) replacement therapy). This means I’m at a higher risk of developing osteoporosis.
I realized this, and discussed my hormone levels with my doctor, and received a bone density scan. Sure enough, I have osteopenia. I now take calcium with vitamin D supplements and exercise with high impact workouts.
Now, if you started estrogen replacement when you were 16, I don’t know if you would have osteopenia at my age (32) because your estrogen levels would not have been as low for as long. These are questions to ask your primary care physician.
What do the hormone levels look like in my body?
Every person is unique. The only way to know that for certain is to do blood work and find an endocrinologist you love and trust who is willing to work with you. In general though:
If you Still have your Testes/ Gonads:
I can speak on this from personal experience. I have not have my gonads removed and am writing this now at 32 years of age. As a teenager I had the testosterone and estrogen levels of a “boy my age” according to my doctor, with testosterone and estrogen remaining consistent with “men my age” as I increase in age. Testosterone has continued to “aromatize” in my blood into estrogen. With lower estrogen production, I have lower estrogen absorption compared to women my age. This means I do have osteopenia. Because I have opted not to remove my gonads, I monitor my gonads bi-annualy for cancer / tumor development / any changes, choosing to use a MRI.
If you’ve had a Gonadectomy:
I can only speak on the experience of others. I hear that once a person has their testes removed, they are put on HRT which often consists of estrogen.
