Intersex

Intersex is a general term used for a variety of conditions in which a person is born with a reproductive or sexual anatomy that doesn’t fit the typical binary of male or female. People who are intersex have reproductive or genital anatomy that doesn’t fit into an exclusively male or female (binary) “sex” classification. This may be apparent at birth or not develop until later. You may never notice and only find out about this after a surgery or imaging test.

Being intersex is not a disorder, disease, or condition; so, the terminology “Disorder of sexual development” (DSD) is inappropriate. Some people use “Differences in Sexual Development,” but most people who are intersex prefer the term “intersex.” Some people who are intersex choose gender affirmation options if their gender doesn’t match the one they were assigned at birth. Some people who are intersex consider their gender to be intersex. Others identify as female, male, non-binary, or a different gender. Being intersex does not affect your sexual orientation. A person who is intersex may be transgender or gender expansive or non-binary if their gender identity doesn’t match the sex they were assigned or raised as.

At Rebirth Health Center, we see many intersex patients. Being intersex may affect your genitals, chromosomes, hormones, reproductive system, ovaries/testicles (gonads). About 1 in 100 Americans are intersex, and around 2% of people worldwide have intersex traits. There are more than 40 different intersex variations that can affect you in different ways. Some intersex traits can be genetically inherited or can happen due to changes to an androgen hormone receptor gene, hormone exposure during embryo development, or missing part of a chromosome.

The most common intersex traits are due to a different combination of chromosomes; everyone inherits sex-linked chromosomes from their parents. People who are intersex may have a mix of chromosomes. Other traits are mixed genitals and sex organs, for example, having ovarian and testicular tissue or having external genitals associated with being assigned male at birth but having internal reproductive anatomy closely associated with being assigned female at birth.

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If you are a person who is intersex, you don’t require any surgery unless you choose it. In the past, children who were intersex underwent surgery to make their genitals match the sex they were assigned at birth or to remove reproductive anatomy (like gonadal tissue) that doesn’t match their assigned sex. These intersex surgeries often take place before you are 2 years old. The risks of intersex surgery can include decreased sexual function, infertility, scarring, urinary incontinence, and frequent urinary tract infections. Surgery may cause trauma if a person later identifies as a different gender than their surgically assigned sex. This can lead to anxiety, depression, and gender dysphoria. We at Rebirth believe these surgeries are unnecessary and have caused harm to many of our patients. It is important to let children choose whether to get surgeries or treatments, and which ones, when they are old enough to make that choice and can give informed consent.

Conditions that can be associated with being intersex include bone problems such as osteoporosis, cancer, congenital adrenal hyperplasia, or androgen insensitivity, hypospadias (where the urethral opening is on the wrong side of the penis) or no urethral opening, Klinefelter Syndrome (XXY chromosome, assigned male at birth), Mayer-Rokitansky-Küster-Hauser syndrome (the uterus and vaginal canal don’t develop as expected), Swyer Syndrome (people with an X and Y chromosome who look female and where the ovaries don’t develop properly).

How do you know if you are intersex? If you don’t have noticeable genital changes at birth, it is possible not to know that you are intersex. Some people find out later in life, for example, if you experience no onset of puberty (no periods if you have a uterus), if you experience changes during puberty that don’t align with your assigned sex (breast development in someone who was assigned male at birth), or have trouble getting pregnant (infertility). Some people find out when they are older that they underwent genital surgery when they were little.

Being intersex can affect your fertility as your ability to conceive a child depends on your reproductive anatomy. Many intersex people can have families through assisted reproductive technology with IVF, using donated eggs, sperm, or embryos or having a surrogate (gestational carrier).

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We at Rebirth are aware that many people who know they are intersex are self-conscious about their appearance, struggle to fit in with peers, or feel they will never find a partner. Others are very scared to come see the doctor because they have not experienced respectful and trauma-informed medical care previously. Many intersex people have come to us for a diagnosis, a medical workup, or help to retrieve medical records about an unknown surgery. Others need a physical or STD screening or are looking for support.

You can find more information here: https://interactadvocates.org/ or information about your condition here: https://rarediseases.org/

If you think you may be transgender or gender expansive or non-binary, we can help you navigate this, provide you with resources, and when you feel ready, start gender-affirming hormone therapy or, if desired, refer you to experienced surgeons. For example, some of our patients with androgen insensitivity syndrome identified as male and desired testosterone and top surgery, while others identified as female and desired estrogen and a vaginoplasty. Some of our patients with congenital adrenal hyperplasia desired facial hair removal, and we helped them with electrolysis. As a gynecology office, we have seen many patients with MRKH syndrome or Turner Syndrome.

Please call us at (801) 272-3909 if you have any further questions or email us at rebirthobgyn@rebirthhealthcenter.com.

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