Mar 142016
 
Baby shower items! by Ana Fuji

Baby shower items! by Ana Fuji

A recent review of fertility preservation in trans and intersex people was published in the new journal Transgender Health. It’s a topic only briefly addressed previously on Open Minded Health (in trans 101 for trans people). Using the review as inspiration then, this week I’ll cover options and factors to consider when it comes to having biological children.

The basic technique in fertility treatments is the harvesting of sperm or eggs. Those sperm or eggs can then be frozen for later use or used for fertility treatments such as in vitro fertilization. For this to work, ovaries or testes have to be producing those eggs and sperm. This means the person has to be past their natal puberty and produce enough viable eggs and sperm that they can be harvested.

For transgender adults, sperm/eggs are best harvested before any hormones are taken. Hormones do reduce fertility, although they are not considered reliable enough to be used as birth control. The amount of estrogens or testosterone needed to have an impact on fertility is currently unknown, but it seems to be different for everyone. So your safest bet is to store egg/sperm before beginning hormones if you can afford it and if having a biological child in the future is important to you. Surgical removal of ovaries/uterus/testes does, of course, make a person sterile and unable to have future biological children.

Trans men who still have a uterus can carry a child but need to be off testosterone to do so as testosterone is harmful to fetal growth. Transgender women cannot carry children with current medicine.

Flowchart

A flowchart for fertility possibilities for trans youth — click to enlarge

For transgender youth it’s more complex. If the youth hasn’t gone through their natal puberty (e.g., for someone assigned female at birth that would be a female puberty) enough to have fertile sperm/eggs, then they have no sperm/eggs to harvest. Going from pre-puberty to puberty blockers to gender-appropriate hormone therapy means that, with today’s technology, there is no future fertility for the youth. If the youth has been on puberty blockers only, the blockers can be removed and the youth allowed to go far enough into natal puberty so that sperm/eggs can be harvested, and then transition. However going through natal puberty is often traumatic for trans youth, and may not be worth it for the youth. There are experimental options currently being used for children with cancer — taking ovarian or testicular tissue from the child and freezing it for future use. However it’s very experimental and I don’t know of anyone doing it for trans youth at this time.

With trans youth there is the added concern of ethical decision making. Children and adolescents cannot give informed consent. That’s the job of the parents or legal guardians. But their desires may clash with that of the youth, possibly causing harm. Depending on the family the question of fertility may or may not be problematic.

For intersex people or people with differences of sexual development, the effect on fertility depends on the specifics of the medical condition. But there are some larger concepts we can talk about. First — being intersex does not automatically mean a person has no fertility. Many of the intersex medical conditions do result in lower fertility. The potential treatment depends on what’s actually causing the low fertility.

  • If the ovary/testis itself is considered “abnormal” (e.g., a mosaic ovary), the effect on fertility is often failure of the ovary/testis. In this case, there’s little that modern medicine can do. The person can try the experimental preservation technique of harvesting and freezing ovarian/testicular tissue, but that’s an experimental technique.
  • If the root cause is hormonal (e.g., congenital adrenal hyperplasia), then it’s possible that sperm/eggs can be harvested. Hormonal treatment may also help fertility.
  • If the root cause is a higher risk of ovarian/testicular cancer, fertility preservation depends on whether the person is pre- or post- puberty. Treatment for an ovary/testicle that has a high risk of becoming cancerous is removal of that ovary/testicle. So if the person has already gone through puberty and is about to have the organ removed, sperm/eggs can be harvested before. If they are pre-pubertal, they can try the experimental technique of freezing the tissue.

Genetic counseling may also be useful for intersex people, as some differences of sexual development conditions are genetic and can be passed down to biological children. Intersex people should receive fertility counseling from physicians knowledgeable in their particular condition at as young an age as possible to maximize their options.

Lastly — never forget that having biological children isn’t the only way to have children. Adoption, fostering, and co-parenting are all wonderful things and are not any less valid ways to have children than having a biological one. If the laws in your state allow, consider adopting, fostering, or co-parenting.

Oct 262015
 

The science of transgender is still in its infancy, but evidence so far points to it being biological. Differences in brain have been seen, and I’ve covered them before here on OMH. However, genetic evidence is also being published! This week, let’s take a look at CYP17. CYP17 is a gene that makes enzymes that are part of sex hormone synthesis. Mutations in CYP17 have been noted in some intersex conditions, such as adrenal hyperplasia.

Now, there’s a SNP that’s been noticed in CYP17. SNPs are “single nucleotide polymorphisms”, which takes some explaining. SNPs are very, very tiny mutations in genes — just one letter in the DNA alphabet changes! SNPs don’t usually change the protein that the gene makes very much.

So we have this gene — CYP17, that is involved in making sex hormones. And we have this tiny mutation, this SNP. Now let’s look at the science!

Specifically, let’s look at this one study that was published back in 2008. They looked at the CYP17 gene in 102 trans women, 49 trans men, 756 cis men, and 915 cis women. They compared the CYP17 of trans women to cis men, and trans men to cis women. Unlike many studies, this comparison makes sense. We’re talking about the DNA in the genes here, not something that’s changed by hormonal status.

They found multiple things:

  • There was no difference between trans women and cis men
  • Trans men were more likely to have a SNP in their CYP17 than cis women were.
  • Cis men, trans women, and trans men all had the SNP more frequently than cis women

What does that mean?

We don’t know yet. But it does appear that CYP17 is a gene that it might be worth looking deeper into to find potential causes for transgender.

Want to read the study for yourself? The abstract is publicly available.

Jun 192015
 
One symbol for DSD

One symbol for DSD

The medical care of people with differences of sexual development (DSD) has changed significantly over recent decades. A difference of sexual development, also called disorder of sexual development or intersex condition, is a medical condition where there is some difference in the sexual development of the baby. The gonads and genitals of a baby may develop in a way that is different from the stereotypically male and female gonads and genitals (“ambiguous genitalia”, for example). Or the baby may have chromosomes other than XX or XY. Or they may be physically female but be XY. There are a large number of conditions that are folded under the title of “Differences of sexual development.”

So how did children used to be treated with DSD? The policy was one of secrecy and surgery. In order not to “confuse” the child about whether they were a boy or a girl, corrective surgery was used at a very early age. Children were often not told that they had a DSD. They took medications without knowing why they took them, or had surgeries without knowing why.

This was standard treatment until intersex people themselves started to speak up. They spoke of being taught to feel shame about their genitals. They spoke of pain and discomfort with sexual activities because of the genital surgeries. They spoke of being assigned the wrong sex. They spoke of the psychological distress of never having been told they had a difference of sex development.

And slowly medicine listened. Today, surgery is not recommended unless the life of an infant is at risk. Open communication is encouraged, and organizations such as the Accord Alliance exist now to support people with differences of sex development.

All of this history brings us to today’s study. D’Alberton et al investigated the quality of life and psychological health of women with DSD in Italy. They compared women with DSD to women without DSD, and they also compared older women with DSD to younger women with DSD to look for effects of the change in the way they were medically treated.

Who did they survey? 43 adult women with DSD, all of whom were genetically XY. Most (79%) had complete androgen insensitivity syndrome. By “women”, the authors mean people who were identified as female at birth and who have female gender identities. They were compared to 43 women without medical conditions, recruited from medical and nursing fields.

What did they measure? They used standardized surveys to measure psychosocial adjustment, quality of life, and depression/anxiety symptoms. They also asked demographic questions and medical questions.

What did they find?

Women with DSD had higher levels of employment and education than women without DSD. Women with DSD were also less likely to have a partner or children and more likely to be living with a parent than women without DSD. Overall quality of life was good for women with DSD. However women with DSD had higher levels of psychological distress (depression, anxiety) than women without DSD.

Younger women with DSD had lower levels of psychological distress than older women with DSD. The younger women were also told their diagnosis at an earlier age than the older women (11.6 vs 15). This suggests that the change in management has indeed made a difference.

Many women with DSD had a surgery. 74% of women with DSD had a gonadectomy (removal of the gonads). Some had additional surgeries, such as vaginal reconstruction. All the women who had gonadectomy were on hormone replacement therapy. There appears to be little standardization of hormone replacement for women with DSD. All the women with DSD in this study reported that they were comfortable with their female gender identity.

What were the limitations of the study? Mostly small sample size. And the sample was a bit of a convenience sample — they were drawn from support groups. The comparison sample was not representative of the average population either, being mostly nurses and medical students. However the authors did make an effort to compare to data from the average population where possible.

What does all this mean?

Overall, women with differences of sex development are doing fairly well. There wasn’t a lot of suicidality or low education or extremely high levels of distress in this group. But it does seem like there’s still work to be done. The finding that women with differences of sex development had higher levels of psychological distress is concerning. The authors recommend that all people with DSD, and their families, be offered psychological support and counseling. It’s a good place to start.

Interested in reading the study for yourself? The abstract is publicly available!

Mar 162015
 

170px-Rod_of_Asclepius2.svgBeing a gender or sexual minority (GSM) is not only difficulty and tricky for patients — it can also be a challenge for medical providers. Medicine can be a particularly conservative field, depending on location and specialty. Lives are, after all, often at stake.

Despite recent advances it appears that some 40% of lesbian, gay and bisexual medical students are hiding their sexual minority status in medical school. Among transgender medical students, 70% were hiding their identity. All because of fear of discrimination.

That fear has been, and still is, warranted. From medical providers transitioning and losing their practices, to medical students losing their residency slots, to LGBT health student organizations fighting to exist, LGBT providers face similar discrimination as our patients.  Similar happens for other gender and sexual minority health care providers, though we lack statistics. At a meeting of kink-identified mental health care providers, one attendee noted a high level of vulnerability for the clinicians. Being “outed” could lose them their jobs or even trigger legal action.

To some extent, discretion among health care providers is warranted. Most people don’t want to know about their clinician’s (or coworker’s) personal lives. And most GSM providers don’t actually want to share those most intimate details. It’s where the line is that can be distressing — how much information is too much? Can I discuss my wife when other women clinicians are discussing their husbands? How exactly do you notify your fellow clinicians or patients about a change in gender pronouns or name? How can a clinician use information gained from intimate encounters to help patients, without revealing too much? It’s a balance we constantly seek. Sometimes mentors are there and can help. Other times we figure it out as we go along.

Yet we bring a lot to the table, as minorities. Like many racial and ethnic minorities, there are pressures and issues that affect GSM people more than the majorities. We bring that knowledge with us to the research we choose to perform, the communities we participate in, and each and every patient encounter.

We as clinicians and future clinicians need to have the support in order to be appropriately open about our gender and sexual minority status. Our patients and clients must know they can be safe and honest with us so they can receive the most complete and respectful care possible.

Some progress has been made already. There’s an association for LGBT medical professionals. There’s an association for kink psychological research. There’s an association for transgender health. All of which allow student members and provide mentoring. Many other organizations exist too. Some US medical schools are working with their students to provide a safe and welcoming environment where these issues can be explored. The American Association of Medical Colleges recently launched a program to enhance education surrounding LGBT and intersex health care. The American Medical Association also has an LGBT Advisory committee.

I’m proud to say that my medical school has been accepting and supportive of its gender and sexual minority patients, and that clinics in the area of my medical school are seeking to expand their care to be more inclusive of LGBT patients. Support exists for both those seeking medical care, and those seeking to provide that care. It’s only the beginning.

Nov 142013
 
Amalia of Oldenburg, Queen Consort of Greece (1836-1862) had MRKHS

Amalia of Oldenburg, Queen Consort of Greece (1836-1862) had MRKHS

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.