Summary: A study of people with Complete Androgen Insensitivity Syndrome and Mayer-Rokitansky-Küster-Hauser Syndrome finds that lack of (sexual) self-confidence significantly affects sexual functioning.

I haven’t covered intersex issues much here on Open Minded Health, but they’re something I’ve been wanting to cover. So I jumped at the chance to review this article. Also a disclaimer: I haven’t had nearly as much contact with intersex communities as I have other communities. If I phrase something in an offensive way, it’s not intended so and I’d love to hear from you to alter my language.

Since I haven’t covered much intersex material here before, I want to take a quick moment here at the beginning to give some background. The term “intersex” is roughly synonymous with the diagnosis of “disorder of sex development”, but the term “intersex” is preferred (or so I understand) by people who are intersex. Intersex is a broad term, referring to any body which has an “unusual” biological sex, either found at birth or often at puberty. This could be chromosomal (e.g., XO or XXY chromosomes), or it could be a result of different hormones (e.g., androgen insensitivity), or just “ambiguous” genitals. “Ambiguous” genitals are genitals that are “in between” or can’t be distinguished as male or female.

Intersex people who have ambiguous, or otherwise unusual, genitals may have surgery done as infants or children to “correct” their genitals to either “male” or (more commonly) “female”. This is a highly controversial thing to do. Intersex adults, who had such surgeries, are now speaking out against the practice, citing lack of informed consent, mangled surgical results, and painful, impaired or nonexistent sexual ability.

Background

The research paper I’m going to talk about today covers people with two intersex conditions: Complete Androgen Insensitivity Syndrome (CAIS) and Mayer-Rokitansky-Küster-Hauser Syndrome (MRKHS). Before I jump into the paper I want to define these diagnoses. I just want to note – since most people with CAIS and MRKHS do identify as women and the gender identity of participants in this study was not reported, for simplicity’s sake I’m going to use female pronouns here. This is not to erase people with CAIS or MRKHS who do not identify as women! It’s a linguistic short cut.

Complete Androgen Insensitivity Syndrome is when a fetus is XY (classically “male” chromosomes), but can’t process their testosterone. Their body makes testosterone, it just can’t use it — the receptors are a little quirky. As a result, the fetus develops along the default pathway – the female path. The baby develops labia and a clitoris. Her vagina may not develop fully, however. The baby has testes, not ovaries, but these are inside. Because she has testes, neither a uterus nor a cervix develop. People with CAIS are what’s called “phenotypically” female – there is nothing about their appearance which tells you they have CAIS. At puberty, a person with CAIS will not menstruate but she does develop breasts and an adult shape though potentially not pubic hair.

Mayer-Rokitansky-Küster-Hauser Syndrome happens in XX individuals, and it’s when the Müllerian system doesn’t develop. That means that while she has ovaries and external genitals, she doesn’t develop a uterus. Sometimes people with MRKHS also don’t develop the deepest part of their vagina, or a vagina at all. For women with either CAIS or MRKHS who did not develop a vagina, or did not develop a vagina fully, there are both surgical and nonsurgical options.

Because both CAIS and MRKHS affect the genitals and sex hormones of those with the condition, and since some people with CAIS or MRKHS have genital surgery, it’s worth asking about their sexual health. That’s exactly what was done in this paper.

Participants, Methods

This was a German study, part of a larger project called “Androgens, Quality of Life and Femininity in People with Complete Androgen Insensitivity (CAIS), Mayer-Rokitansky-Küster-Hauser Syndrome (MRKHS) and Polycystic Ovary Syndrome (PCOS)”. This was a cross-sectional survey study – the researchers identified potential participants and had them fill out a survey once.

60 adult women diagnosed with with CAIS (11) or MRKHS (49) were included in this analysis. Diagnosis was confirmed either by examination of medical records or through self-report of symptoms. Age varied between the women with CAIS (median = 39) and MRKHS (median = 22), and as might be expected so did the years of education. Half of the women with CAIS were in a relationship whereas roughly 3/4 of women with MRKHS were in a relationship. The vast majority of these relationships were opposite-sex relationships. A little over 1/3 of the women with CAIS had treatment to create a neovagina or deepen the vagina (dilation). Nearly all of the women with MRKHS (46/49) had such treatments, sometimes more than once. Control data was used from a previous study.

All of the women with CAIS had had their testes removed. This is a fairly standard treatment because of fears the testes could develop cancer. Most of the participants with CAIS were on hormone therapy as a result. Some participants with MRKHS (11) also used vaginal estrogen creams.

There was no overall difference between women with CAIS and women with MRKHS for satisfaction in vaginal depth. However when you look closer and compare participants who had vaginal treatments vs no treatment, it becomes clear that women with MRKHS who did not receive treatment were not satisfied.

Participants were asked to fill out the following questionnaires:

Female Sexual Function Index

Feelings of Inadequacy in Social and Sexual Situations Scale

Rosenberg Self-Esteem Scale

Brief Symptom Inventory, Depression scale only

Questions on sexual problems/dysfunctions, based on the DSM-IV-TR

Open-ended questions on the reasons for the participant’s sexual difficulties

Results, Conclusions, Discussion

There was no difference between people with CAIS, MRKHS and controls for the number of sexual problems. However, participants with CAIS were statistically less likely to be satisfied with their sex life than participants with MRKHS. Participants with CAIS were also far more likely to report difficulty initiating sex and fear of sexual problems. However when it came to other aspects of sexuality, such as orgasm frequency, pain during intercourse, or difficulties with arousal there was no difference between women with CAIS or MRKHS and the controls.

Scores on the Female Sexual Function Index suggest that women with CAIS/MRKHS has less sexual functioning than controls. Feelings of inadequacy in sexual situations was also higher in participants with CAIS or MRKHS. Self esteem was highest in women with MRKHS and lowest with women with CAIS when compared with controls. 22% of women with MRKHS and 54% of women with CAIS indicated no sexual contact in the past 4 weeks.

When it came to the open-ended questions, several themes emerged. Women with CAIS were concerned about interactions with their partners and not being “good enough” for their partner. Women with MRKHS also had concerns relating to their partners, but they also reported “difficulty of letting go during sexual activity”, fear of pain or injury, and physical difficulties relating to their vaginas.

Taken together, all these results fit together like puzzle pieces. From this study it appears that most of the sexual difficulties of women with CAIS are psychological, not necessarily physiological. The authors point out previous studies where women with CAIS reported that the impression of having an “abnormal” vagina was damaging to their self esteem. In addition, previous studies showed only good sexual functioning in women with CAIS, and the only factors in this study which showed as different from control were psychological. Women with MRKHS appeared to have more of a physical basis for sexual difficulties – .7% (6) of the sample had physical difficulties. But the psychological component is there too.

The authors comment “Although CAIS is barely perceptible to the naked eye, knowing about the XY-karyotype can severely affect the individual’s self-esteem and lead to even more pronounced insecurity in sexual contexts”. Absolutely, and I think that basic idea is applicable to most if not all intersex people and somewhat to transgender people too. If there’s something different about your sexual functioning, of course you’re going to be nervous and insecure…especially when that something is so heavily stigmatized!

Limitations include the usual ones. There are significant differences between the samples (age and education primarily), which could be associated with different opportunities for positive sexual exploration. The data is primarily self-report, which is always subject to bias and may be inaccurate. The sample sizes are relatively small, which potentially affects which differences could be statistically detected. As always, these results may or may not be generalizable. For example – American people with CAIS or MRKHS may have different psychosocial pressures than German people do. Same thing with the fact that the sample was largely heterosexual. Regardless, I don’t spot any areas of significant concern which lead me to doubt the validity of the results in this study. We just need it replicated and confirmed/not confirmed.

In their conclusion Fliegner et al make the argument for an interdisciplinary (i.e., including psychotherapy, sex therapy and other forms of psychosocial support) approach to treating people with CAIS or MRKHS. Sounds like a wonderful idea!

This paper was published in the Journal of Sexual Medicine. The abstract is publicly available.

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