So, you think you might be intersex!
Perhaps, following strange visits to doctors during your childhood, comments from a loved one, or after looking through your medical records, you’ve begun to suspect that your body is structured differently from what is generally assumed. This guide is here to take your suspicions and help turn them into concrete steps.
Perhaps you’re only just beginning to learn about this, or the topic was kept hidden in your family, or maybe this is a new perspective on the characteristics that have been with you your whole life. Perhaps you’re going through (or not going through) puberty right now. Although this is a confusing time, you are by no means alone.
Intersex people make up around 1.7% of the population — just as common as redheads or people over 85. You’ve probably met intersex people before, even if you didn’t realise it at the time!
So what exactly is an intersex variation?
Intersex is an umbrella term for a wide range of physical variations that result in a person developing primary or secondary sex characteristics that do not conform to the traditional medical view of a ‘female’ or ‘male’ body.
Many medical institutions use rigid, outdated definitions of intersex variations that exclude certain variations. You may be told that you are not a ‘real’ intersex person if you do not have a chromosomal variation, or genitalia that falls within a certain range, or other items on a checklist that was almost certainly devised by a non-intersex person.
TIGERRS (Trans, Intersex, Gender-Expansive, Resources, Research, and Support — an American organisation providing resources, research and support to transgender, intersex and gender-non-conforming people) rejects these narrow boundaries and welcomes all intersex people, including those with chromosomal, physical and hormonal variations.
Self-identification and identity
Having a sex variation does not at all oblige you to call yourself an intersex person. However, we believe that connecting with people who have similar experiences can be a huge source of support for you
Being intersex is not a completely separate, third category that excludes you from identifying as male or female (although you are certainly free to simply say that you are intersex). Your biological characteristics can influence your gender identity only to the extent that you wish them to.
Doctors cannot dictate your identity. Only you decide what is safest and best for you.
Important warning
Before we look at some common physical manifestations of intersex variations, we have a few warnings:
- We are not doctors, and this leaflet cannot give you a definitive diagnosis.
- Intersex variations can manifest or be discovered at any time — at birth, during puberty, or in old age.
- More and more variations are constantly being discovered.
- Most of the knowledge about what it is like to be intersex can only be found within the community, not from doctors.
- The medical model of intersex variations is not the only way, nor the best way, to understand variations in sex.
- The infinite diversity of the human body cannot be squeezed into a set of categories, no matter how many there are.
- Throughout human history, many cultures have had unique roles for intersex people.
- Disclaimer: Having one characteristic does not make you an intersex person; it is merely a cue to explore yourself.
Characteristics more commonly associated with AFAB (Assigned Female at Birth)
Note: Many intersex variations are related to how the adrenal glands or pituitary gland function, rather than just the external appearance of the genitals.
- Lack of a period
- Irregular periods
- Hypergonadism (excessive function of the sex glands)
- Clitoromegaly (large or constantly swollen clitoris)
- Ovarian cysts
- Large breasts or lack of breast growth
- Abdominal pain or pain during sex
- Excessive hair growth (hirsutism)
- Deepening of the voice
- Split clitoris
- Partial fusion of the labia
Common signs (EVERY)
- Webbed neck
- Speech problems
- Above-average height
- Ovotestis (presence of both ovarian and testicular tissue)
- Insulin resistance or high blood sugar
- Kidney or heart problems
- Arms that turn out at the elbows
- Broad chest with widely spaced nipples
- Short fingers and toes
- Oily skin / Acne / Fatigue
- Genital growth or increased muscle mass during puberty
- Bone density issues / Early-onset osteoporosis
- Sudden and early growth spurts or a complete lack thereof
- Delayed or absent puberty (or, conversely, early puberty)
- Scarring on the abdomen or genitals (may indicate childhood surgery)
- Incontinence or balance issues
- Infertility or low libido
Signs more commonly associated with AMAB (Assigned male at birth)
- Gynecomastia (breast growth)
- Undescended or partially undescended testicles
- Delayed tooth growth
- Poor motor control / Crossed eyes
- Difficulties with reading, writing and maths
- Erectile dysfunction
- Hypospadias (abnormal positioning of the urethra)
- Congenital anorchia (absence of testicles at birth)
- Low sperm count
- Lack of muscle mass (or inability to build muscle)
- Wide-set eyes / Bent pinky
- Congenital chordee (curvature of the penis)
- Small penis
General signs related to the BODY
- Hair loss / Low-set ears
- Numbness or sensory disturbances in the genital area
- Patchwork skin colouration
- Autoimmune disorders
- Different coloured eyes
- Less body hair than average
- Aromatase deficiency
- Hearing issues (Hearing issues)
- Ambiguous genitalia
- Weight gain / Fatty liver / Glucose intolerance
- Dyspraxia (a movement coordination disorder)
- Hot flushes / Developmental delays
- Hypertension (high blood pressure)
Talking to family and loved ones
Talking to people about your body can feel alienating and awkward. It can be particularly difficult to ask loved ones about worrying details you’ve come across in medical records, or about things you’ve long wanted answers to.
The first step is to remember the need to ‘ground yourself’. Take a deep breath, feel yourself in your body, acknowledge your feelings and stay determined. You deserve answers, you deserve to share your truth, and you deserve to be treated with respect. If your family isn’t particularly open, we recommend coming to the conversation with a list of specific questions prepared in advance.
Getting answers
When you first bring up the topic of intersex variations, you often face intrusive questions about your reproductive health and body parts. Think in advance about what you feel comfortable sharing. Stick to your boundaries. If your carers refuse to answer, try reaching out to relatives or family friends who were close to you during your childhood.
And remember: you can just walk away! If it gets awful, ‘hit da bricks’!
Coming out as an intersex person
Stating that you are intersex is sometimes perceived as an invitation to discuss your anatomy, trauma and experiences with medical staff. It is worth preparing for a wide range of reactions: from attempts to defend themselves and feelings of guilt to genuine curiosity and acceptance.
If your family made decisions about medical interventions, this may provoke a strong reaction, driven by an attempt to cope with their own guilt. Remind them that this conversation is about you, not them. Your bodily autonomy is more important than their feelings. If someone reacts with disgust, remind them that your variation is natural and not contagious. Often, it is a trait you have inherited from them! After the conversation, take time to process your feelings and reach out to other intersex people for support. Your feelings are valid, however confusing they may seem to others.
Diagnosis and testing
1. Reviewing your medical history
The first step is to review your history. Healthcare legislation usually guarantees your right to access medical confidentiality and obtain copies of your medical records. We also recommend obtaining your parents’ records, if possible.
What to look for in the documents:
- Outdated terms: ‘hermaphroditism’ or ‘pseudohermaphroditism’, as well as ‘hormonal imbalance’ and PCOS.
- Surgical procedures in childhood (especially in infancy), often described as hernia repairs.
- Hormone replacement therapy, contraceptives or puberty blockers.
- Unusual descriptions of the genitals, the word ‘ambiguous’.
- Pelvic examinations using imaging (ultrasound).
- A crossed-out or altered gender on birth records.
2. Testing
- Karyotyping: Examines chromosomes (XXY, XO, etc.).
- Genetic testing: Analyses specific genes.
- Biochemical tests: Hormone levels (LH, FSH, AMH, testosterone, oestrogens).
- Stimulation tests (hCG or ACTH): Check the body’s response and the hormonal ‘conveyor belt’.
- Imaging: Ultrasound, MRI of internal anatomy.
- DEXA scan: Bone density check (extremely important for intersex people).
Standing up for your rights at the clinic
Getting a diagnosis can be an uphill battle. Many doctors will be incompetent.
- Write everything down: A list of questions will make doctors slow down. You are the world’s leading expert on your own body.
- Set boundaries: Decide which tests and questions are acceptable to you. If a doctor wants to carry out a pointless test, insist that your refusal is noted in your medical records.
- Documentation: Always communicate via email or text messages so that you have proof of appointments or refusals.
- Bring support: You have the right to bring someone with you or book an appointment (check local laws).
- Training medical staff is not your responsibility. If a doctor brings in students without your consent, insist that they leave the room. Medical care should be provided on your terms.
- Press pause: If urgent surgery is suggested — stop. In most cases, this is not a matter of life and death, but an attempt to ‘conform’ your body to a standard. You have the right to a second opinion and to take a break for several years.
- If you feel uncomfortable — leave. In medical practice, there are instances of misinformation being given to people with intersex variations: body parts may be referred to as ‘tumours’ to justify imposed surgeries. Remember: your bodily autonomy is more important than the feelings or convenience of doctors.
Author: Ly Baumgardt
