Updates on Trans-Related Diagnostics

There has been a major move to depathologize transness, as homosexuality was somewhat depathologized in the 1970s (but kept around as a "legacy" term as "ego-dystonic sexual orientation" so that psychologists and psychiatrists could continue to "diagnose" gay people). In a similar fashion, we have seen "transsexualism" move to "gender identity disorder" and then to "gender dysphoria" and now "gender incongruence".

Currently, SNOMED still contains the antiquated terms related to "gender identity disorder" which have been removed from modern diagnostic guidelines. It is recommended that they be removed or folded into another term outside the "disorder" hierarchy (preferably in the finding hierarchy). Additionally, separation of these terms by age group is not helpful and can lead to further pathologization. Age at diagnosis can be indicated elsewhere and is not part of a diagnosis (supposedly they represent "age of onset" but there is no "onset" of transness, it just is).

• "World Health Organization removes "gender identity disorder" from list of mental illnesses"
• "The APA Removes "Gender Identity Disorder" From Updated Mental Health Guide"
• "Transgender Identity Terms and Labels"
• "Disordering Gender Identity: Gender Identity Disorder in the DSM-IV-TR"
• "Opinions About the DSM Gender Identity Disorder Diagnosis: Results from an International Survey Administered to Organizations Concerned with the Welfare of Transgender People"
• "Recommendations from the WPATH Consensus Process for Revision of the DSM Diagnosis of Gender Identity Disorders: Implications for Human Rights"
• "LGBTQs and the DSM-5: A Critical Queer Response"
• "Gender Identity: The Human Right of Depathologization"

Likewise, "dual-role transvestism" and "fetishistic transvestism" have no consistent diagnostic guidelines and should be removed.

• "Disordering Gender Identity: Gender Identity Disorder in the DSM-IV-TR"
• "LGBTQs and the DSM-5: A Critical Queer Response"

Additionally, "gender dysphoria" should be moved out of the "disorder" hierarchy and into the finding hierarchy, being more consistent with current treatment guidelines and depathologization.

• "Gender Identity: The Human Right of Depathologization"
• "The Misuse of Gender Dysphoria: Toward Greater Conceptual Clarity in Transgender Health"

The proposal that I made in the forthcoming document we will discuss, based on this information (as well as the forthcoming ICD-11), was:

1. Mood finding
   • Dysphoric mood (SCTID: 30819006)
     • Gender dysphoria. A feeling of discomfort or distress related to an individual’s gender identity and its relationship to their assigned gender, sexual characteristics, or gender-related expectations and experiences. Cisgender and intersex people can experience gender dysphoria as well; for instance, a cisgender woman with marked hirsutism may experience distress based on how women are expected in many cultures to not have facial hair.
       • Gender incongruence. A marked, long-term pattern of gender dysphoria, typically more associated with transgender and intersex persons.
       • Physical gender dysphoria. Feelings of discomfort or distress related to an individual’s gender identity in relationship to their sexual characteristics. Synonyms: Physical dysphoria.
       • Sexual gender dysphoria. Feelings of discomfort or distress related to an individual’s gender identity in relationship to their sexual experiences or lack thereof. Synonyms: Sexual dysphoria.
       • Hormonal gender dysphoria. Feelings of discomfort or distress related to an individual’s gender identity in relationship to their hormonal makeup. Synonyms: Hormonal dysphoria, Biochemical dysphoria.
       • Social gender dysphoria. Feelings of discomfort or distress related to an individual’s gender identity in relationship to their social experience or experiences. Synonyms: Social dysphoria.
       • Presentational gender dysphoria. Feelings of discomfort or distress related to an individual’s gender identity in relationship to their gendered presentation or expression or how such presentation and/or expression is perceived. Synonyms: Presentational dysphoria.
       • Existential gender dysphoria. Feelings of discomfort or distress related to an individual’s gender identity in relationship to missed opportunities, different expectations, and/or lack of particular experiences due to their assigned gender and/or sex at birth. Synonyms: Existential dysphoria.
     • Euphoric mood
       • Gender euphoria. A feeling of comfort or even joy related to an individual’s gender identity and its relationship to their assigned gender, sexual characteristics, or gender-related expectations and experiences. Increasing gender euphoria is just as important as decreasing gender dysphoria for many transgender and/or intersex persons, as well as for some cisgender people.
         • Gender congruence. A marked, long-term pattern of gender euphoria, typically more associated with cisgender persons (and potentially transgender persons who have their gender consistently affirmed.
       • Euthymic mood
         • Gender euthymia. A normal, non-depressed, and reasonably positive mood associated with one’s gender identity and its relationship to their assigned gender, sexual characteristics, or gender-related expectations and experiences. Typically, those who experience gender euthymia are cisgender.

Much of this was based on information here (https://genderdysphoria.fyi/gdb) and the depathologization efforts I mentioned above. There are, however, a few things I want to note:

1. "Why are cisgender people mentioned under the heading of 'gender dysphoria'?"

It has been shown that cisgender women with polycystic ovarian syndrome (PCOS) experience gender dysphoria under clinical definitions (https://pubmed.ncbi.nlm.nih.gov/22443151/). It may be possible that cisgender people who experience distress in their differentiation from the "norm" of a gender provided in a given sociocultural context may also.

1. "Why is gender incongruence mentioned separately from gender dysphoria?"

The diagnostic criteria ascribed to the two are different and are used in different contexts. 

The WHO (ICD-11) defines "gender incongruence" as "characterized by a marked and persistent incongruence between an individual's experienced gender and the assigned sex". 

The APA (DSM-5) provides a list of criteria for diagnosis which subsumes the ICD-11 definition above but does not necessarily include it.

The criteria are at least two of the following:

• A marked incongruence between one’s experienced/expressed gender and primary and/or secondary sex characteristics (or in young adolescents, the anticipated secondary sex characteristics)
• A strong desire to be rid of one’s primary and/or secondary sex characteristics because of a marked incongruence with one’s experienced/expressed gender (or in young adolescents, a desire to prevent the development of the anticipated secondary sex characteristics)
• A strong desire for the primary and/or secondary sex characteristics of the other gender
• A strong desire to be of the other gender (or some alternative gender different from one’s assigned gender)
• A strong desire to be treated as the other gender (or some alternative gender different from one’s assigned gender)
• A strong conviction that one has the typical feelings and reactions of the other gender (or some alternative gender different from one’s assigned gender)

Granted, these are already massively out of date and do not account for the existence of nonbinary people at all, but they are the criteria as they currently exist.

Separating the two allows for greater conceptual clarity, inclusion of more diverse forms of gender-related differences, more alignment with current standards, and further depathologization of transness and gender diversity.

1. "Why have you listed gender euphoria and gender congruence?"

It is important to have gender euphoria for two reasons: (1) not all trans people experience gender dysphoria, some simply experience euphoria which is connected to gender identity aligning with their body, pronouns, name, etc.; and (2) gender dysphoria may resolve and there is no way to indicate it-- instead providers have to label trans patients as "gender dysphoric" for their entire lives even if they are no longer dysphoric.

Gender congruence fulfills a similar role and allows a provider to mark that things are going well, actually. That the patient is living a fulfilled life and has a history of incongruence which is no longer present.

1. "What is gender euthymia?"

This is a term that Community-Based Research Centre (CBRC) (https://www.cbrc.net/) coined last year to describe a state which is between euphoria and dysphoria. It is slowly gained a bit of traction, and I included it for the sake of completion (and to account for intermediate phases between dysphoria and euphoria), but I could go either way on its inclusion.

Hi Clair, thanks so much for this discussion thread. It is clear you have put a lot of thinking and effort into analysing these terms and relationships. So kudo to you for the work. I am still trying to digest all of this information and have a few comments and questions so please bear with me ...

1. Your comments covered multiple topics including transvestism, gender dysphoria, adding/removing concepts, and moving between hierarchies (disorder → finding). It may be helpful for the group to agree on a way to tackle each topic in turn so we can track the discussions and decisions over time.
2. There is a long list of concepts for Mood finding in your comment. Are these concepts you are proposing or they are from someone else? There is mention the concepts are based on the Gender Dysphoria Bible website. I noticed some of proposed concepts are slightly different from those on the website. For example, Hormonal gender dysphoria vs. Biochemical dysphoria, Social gender dysphoria vs. Social dysphoria, and Sexual gender dysphoria vs. Sexual dysphoria. It is unclear what are the implications with these minor variations.
3. In the proposed concepts, Gender incongruence is indented under Gender dysphoria so is it a subtype? You asked why Gender incongruence is separate from Gender dysphoria. The current version of SNOMED CT has Gender dysphoria as a synonym of Gender dysphoria (SCTID 93461009). So I am also unclear why it is listed separately and as a subtype.
4. You have included a detailed definition for Gender dysphoria but it is unclear where is the source of this description? Knowing the source may help me better understand the question you raised as to why cisgender people are mentioned under gender dysphoria.
5. It seems most of the proposed concepts do not exist in the current version of SNOMED CT. I did notice for Sexual gender dysphoria there is an existing concept 763407008|Ring chromosome Y syndrome|, which is not what I was expecting to see.
6. Near the end you raised another question why Gender euphoria and Gender congruence. I think both concepts make sense based on the explanation on the Gender Dysphoria Bible website. Right now Gender congruence is not among the proposed concepts. Should it be?
7. I am still going through the SNOMED recommendations document, and hope to offer another comment before our next meeting.

Thanks -francis

Hi Francis Lau  !

Thanks for all of the questions, I much appreciate it! I'll do my best to go through one-by-one.

1. Yes, the current system is extremely updated, including many terms which were simply imported into SNOMED from Read v3 (CTV3) in 2001. This means many of the codes are legacy codes stretching all the way back to DSM-I (including things like "sodomy", for instance). I think going one topic at a time is great; we just need to have a solid plan on scope moving forward. It would be great to have a clear layout of the group's goals and proposed timeline at the next meeting.
2. These terms are from the Gender Dysphoria Bible linked above primarily (https://genderdysphoria.fyi/gdb). However, this is not the only resource that uses this kind of terminology. For instance, here are some citations for physical dysphoria (also called "body dysphoria") showcasing its wide usage in academia and in practice (https://digitalcommons.linfield.edu/cgi/viewcontent.cgi?article=1098&context=symposium, https://journals.lww.com/jrnldbp/Abstract/2019/11000/Baseline_Mental_Health_and_Psychosocial.3.aspx, https://www.themaercksinstitute.com/transgender-surgery/male-to-female-mtf/, https://www.drtimalexander.com/female-to-male-ftm/). Social dysphoria has been a similar mainstay (https://www.goodtherapy.org/learn-about-therapy/issues/gender-dysphoria, https://www.npr.org/sections/pictureshow/2020/06/30/883930251/documenting-gender-dysphoria, https://www.wellsanfrancisco.com/harm-reduction-to-gender-dysphoria/, etc., via a cursory Google search). The others are commonly described within the trans community, but haven't gained traction in the medical community, as the main focus of a gender dysphoria diagnostic has always been constructed around a "surgery" or "no surgery" diagnostic, rather than with input from people who actually experience it (for instances of this, look at the advisory committees for ICD and DSM over the last 70 years). The implications of the variations are to be more inclusive of different types of dysphoria which exist and have been described; to allow for providers to track status of different types of dysphoria for different patients; to allow for wider analysis of dysphoria trends in regard to the health of the individual; and to showcase efficacy of various transition paths without holding to a supposed "true trans" pathway.
3. It is listed separately as a subtype because of what I mentioned above. The diagnostic criteria for gender dysphoria and gender incongruence are different, but the criteria for gender dysphoria subsume the criteria for gender incongruence. It is an instance of all toads are frogs, but not all frogs are toads.
4. The definition is a compound definition formulated based on literature. The mentioning of some cisgender women experiencing dysphoria is based on the findings related to PCOS that I mentioned above (and linked, but I'll link it again here). It is important because the hirsutism that some cis women face is extremely detrimental and insurance plans which cover hair removal for trans people often don't extend it in these cases. Extending the criteria consistent with literature would be helpful in that regard. There are also cisgender intersex people who experience gender dysphoria even though their assigned gender and gender identity match. For more information on intersex gender dysphoria see here.
5. Based on a cursory Google search, according to Orphanet (https://www.orpha.net/consor/cgi-bin/OC_Exp.php?lng=EN&Expert=261529) gender dysphoria is observed in patients with ring chromosome Y syndrome. It was probably mislabeled as "sexual dysphoria" back when there was confusion on whether "sexual dysphoria" or "gender dysphoria" was more correct (1970s-1990s). The term probably was imported from CTV3 and hasn't been updated since.
6. Gender congruence is there underneath gender euphoria.
7. Great! Can't wait to hear your further comments!

Update: I've asked 372 trans people about whether they believe including subtypes like physical dysphoria, social dysphoria, etc., would be useful.

41% said it would be helpful. 15% said it would not be helpful. 29% said it might be helpful.

Here are some of their comments indicating negatives:

• "The idea that this information would actually be used to help the patient rather than for gatekeeping, seems so far removed from the reality of trans healthcare that honestly I would completely dismiss that possibility"
• "I don't trust providers not to use this information inappropriately (because, in my experience, they aren't trustworthy)."
• "Cis people, including our providers, have such a rudimentary idea of transness. This subject may be too complex for them to grasp, and they'll just muddy the discussion with their sumbling."
• "I think it would be detrimental to distinguish between them, unless it was guaranteed it wouldn't be used to gatekeep different types of treatments."
• "Qualitative as part of individualised care planning yes (it would be useful), but the moment it gets formalised and it will be, because we see this consistently in healthcare it (will) become a tool for denial of care."

Etc., etc.

Will this in mind. I'd like to pull back the proposal to:

Mood finding

• Dysphoric mood (SCTID: 30819006)
  • Gender dysphoria. A feeling of discomfort or distress related to an individual’s gender identity and its relationship to their assigned gender, sexual characteristics, or gender-related expectations and experiences. Cisgender and intersex people can experience gender dysphoria as well; for instance, a cisgender woman with marked hirsutism may experience distress based on how women are expected in many cultures to not have facial hair.
    • Gender incongruence. A marked, long-term pattern of gender dysphoria, typically more associated with transgender and intersex persons.
• Euphoric mood
  • Gender euphoria. A feeling of comfort or even joy related to an individual’s gender identity and its relationship to their assigned gender, sexual characteristics, or gender-related expectations and experiences. Increasing gender euphoria is just as important as decreasing gender dysphoria for many transgender and/or intersex persons, as well as for some cisgender people.
    • Gender congruence. A marked, long-term pattern of gender euphoria, typically more associated with cisgender persons (and potentially transgender persons who have their gender consistently affirmed).
• Euthymic mood
  • Gender euthymia. A normal, non-depressed, and reasonably positive mood associated with one’s gender identity and its relationship to their assigned gender, sexual characteristics, or gender-related expectations and experiences. Typically, those who experience gender euthymia are cisgender.