May 152017
 

The term intersex is synonymous with differences/disorders of sexual development (DSD). We are taught in grade school that men have XY chromosomes and have a penis and testicles. Women are XX and have a vagina and uterus. And some go so far as to claim that those two sexes are the only human sexes. Well, they’re wrong. People with DSDs or who are intersex are those whose biological sex is different in some way.

Obviously, human embryology is complicated. But here’s a simplified summary. As embryos we’re all the same. Our gonads are the same blobs of tissue. The genital tubercle, a lump of tissue with a fancy name, can become either a penis or a clitoris. With testosterone and working testosterone receptors, the tubercle grows and becomes a penis. Likewise, the gonads become testicles. Without testosterone and working receptors, those structures become a clitoris and ovaries.

What are intersex medical conditions?
A roman fresco of Pan and Hermaphroditus, found in Pompeii. Hermaphroditus was the origin for the term "hermaphrodite", which is an old and no longer used medical term for intersex/DSD individuals

A roman fresco of Pan and Hermaphroditus, found in Pompeii. Hermaphroditus was the origin for the term “hermaphrodite”, which is an old and no longer used medical term for intersex/DSD individuals

Here are two examples of intersex/DSD medical conditions.

An individual can have XY chromosomes, have testosterone, but have testosterone receptors that don’t work. Without working receptors, their body develops along the “female” path. They have a vulva, vagina, and clitoris. They also have testicles inside. This is called Androgen Insensitivity Syndrome (AIS).

AIS can be “complete”, where the receptors don’t work at all. Or it can be “incomplete” where the receptors work a little, and the person has a more mixed biological picture. Individuals with AIS often present and think of themselves as female. They may not even know they have AIS until they don’t have periods or try to get pregnant.

On the other hand, an individual can have XX chromosomes and have hyper-active adrenal glands. The adrenal glands sit on top of the kidneys and produce a lot of different hormones. That includes some sex hormones. So hyperactive adrenal glands means more testosterone. More testosterone means that genital tubercle becomes a penis and the labia become a scrotum. So the individual has a penis and scrotum, but has ovaries hidden inside. This is called Congenital Adrenal Hyperplasia (CAH).

Like AIS, CAH can be more “complete” with a fully developed penis and scrotum. CAH can also be “incomplete” with a mixed picture. Individuals with CAH often identify as female. Some do identify as male. Some forms of CAH are potentially fatal, since the adrenals also make hormones that change how salt is handled by the body. Individuals with that form of CAH, called “salt wasting”, need to take steroids lifelong. Today, we test infants for CAH at birth.

Other forms of intersex exist. However those are the two discussed in the paper. If you’re not familiar or comfortable with intersex terminology, it’s probably a fair place to start.

So what about this week’s paper?

This week is a paper published by Beale et al. They examined long term health outcomes in intersex individuals. Their paper summarizes the published research.

We don’t have a lot of data on long term health outcomes in intersex individuals. Physicians used to advocate for early surgery for infants and a gender assignment. Physicians feared that children would be confused if they knew they were intersex. So they recommended that the person not be told they were intersex. Then intersex adults spoke up.

Surgery for infants is no longer standard. Effective treatment of intersex children really only started in the 1960’s. It didn’t become patient-centered until much later. So we don’t have many older intersex people to study or listen to. But we are starting to collect data. Let’s look at what we have.

Congenital Adrenal Hyperplasia

People with CAH need to be on steroids life-long. The steroids keep the adrenal glands quiet. Without steroids, the adrenals go back to producing lots of testosterone. The person may become masculinized. And for some patients, the adrenals may produce too much of the hormones that balance salts and water. That is life-threatening. Consistent visits with a health care provider throughout their lifetime is important.

But we also know that steroids have their risks. Osteoporosis is one risk. So far, individuals with CAH do not appear to be at higher risk for osteoporosis. The other known risks for people with CAH are obesity, high blood pressure, and abnormal lipids (including high cholesterol). So far we don’t yet know if there’s a clinical impact yet. That is, we don’t know if people with CAH are at higher risk for heart attacks or strokes. Studies will continue to follow people with CAH to find out.

Individuals with CAH are able to get pregnant as long as they have a uterus. They do need higher doses of steroids during their pregnancy. Additionally, they may need psychological support through their lifetime. But their quality of life is similar to that of people with other adrenal conditions.

Androgen Insensitivity Syndrome

AIS does not have a long term need for medications like CAH does. However, there are risks associated with having testicles inside the human abdomen. Testicles like to be kept cool. That’s why they migrate to the scrotum. Individuals with AIS are infertile because of the warmth of the abdomen. And testicles that stay in the abdomen have a risk of developing cancer. For that reason, we advise people with AIS to have their gonads surgically removed.

Some people with AIS may choose to keep their gonads until they go through puberty. The testosterone that’s produced by the testicles gets converted to estrogen in their bodies. So they can have puberty without taking hormones. Keeping the gonads that long is a risk, though. People with AIS need to talk with a knowledgeable physician about gonad removal.

For people with AIS who have had their gonads removed, starting hormone replacement therapy is crucial. Sex hormones are needed for healthy bones. If they have a uterus they should receive both estrogen and progesterone. The progesterone protects the uterus from developing cancer. If they don’t have a uterus, they can take just estrogen. Remember – their testosterone receptors don’t work, so giving testosterone won’t help. Individuals with AIS can become pregnant through egg/sperm donation if they have a uterus. Otherwise they will need to adopt or use a surrogate.

Just as with CAH, psychological support for people with AIS may be crucial. AIS can also be diagnosed later in life than CAH, so making sure the patient knows their diagnosis and is supported during that time is important.

Conclusion

As with LGBT health, we just don’t know a lot about the long term health of people with intersex conditions. Long term risks of cancers like breast cancer, cardiovascular disease, and other diseases/disorders are unknown. Stay tuned, and I’ll continue to cover studies as they’re published.

What can you do with this information?

First — if you are an intersex individual or have been diagnosed with a DSD, I recommend joining a study. We need data. Second — find a doctor who treats you well. Keep them in the loop. See them regularly. Ask them questions. If you need to change doctors, make sure you have all your records. Third — take care of yourself. Eat well. Exercise Take your medications. Avoid or reduce drug use. And remember to breathe and enjoy life.

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

May 082017
 

Can you spare 30 minutes a year to increase our knowledge of LGBTQ health?

Do you identify as LGBTQ?

If yes, then please check out The PRIDE Study!

The PRIDE Study is a new longitudinal study by the t of California San Francisco. It is the first long-term study ever launched on LGBTQ health.

Long time readers may remember when I wrote about the Institute of Medicine report on LGBT health. I jokingly summarize it as “400 pages to say that we need more data.” With studies like The PRIDE Study, we can change that. We can get real, hard, high quality data on the health needs of our communities.

Knowing the health needs of our neighbors, lovers, and friends means we can have a real impact on their health.

As always, data collected as part of the study is kept confidential. You can opt out any time you want. You can also opt into additional studies that will be connected to The PRIDE Study.

So please — if you identify as LGBTQ and can spare 30 minutes a year, join The PRIDE Study.

And spread the word!

We’ll be back to our regular programming here at Open Minded Health next week.

Mar 202017
 

The term “gender and sexual minorities” isn’t just sexual orientation and gender identity. It also includes relationship structures, like non-monogamy, and sexual practices. Perhaps the most common minority sexual practice is BDSM/kink. BDSM stands for bondage, dominance, submission/sadism, and masochism. The terms BDSM and kink are roughly interchangeable. For today’s article I’ll be using the term kink.

Kink is an activity between consenting adults for the purpose of creating intense physical and/or psychological experiences. The intense sensations can range from physical restraint (bondage) to tickling to pain. Psychological experiences can include role playing and voluntary power exchanges. Power exchange is where one person “takes control” for a period of time. Fetishes are common. Experiences are often called “play.” There can be significant overlap between kink, polyamory, sex positivity, and LGBT communities.

As many as 2-10% of people enjoy kink. Many more have thoughts of it. Some prefer kink activities over non-kink activities. Others identify as kink-oriented or kinky. Kink-oriented people see it as part of their identity, like being gay. Still others only enjoy it from time to time. They dabble but don’t feel strongly attached.

Unfortunately, kink is heavily stigmatized in the United States. As a result kink-oriented people are afraid of “coming out”. There is also minimal understanding or acceptance of kink in the medical community. In fact, it is often confused for abuse or intimate partner violence. Patients who practice kink may not be able to get the healthcare they need.

The Kink Health Project
Rope

Rope is commonly used in kink

So what about the study? Today’s study, the Kink Health Project, was a qualitative study. The researchers came together with community members and asked open ended questions. They collected the free-form information and found themes. Aside from the demographics, no statistics here, just concepts and idea.

The study was done in the San Francisco Bay Area in California. TASHRA played a huge role. The study was designed with input from 16 community members. Then there were large “town hall” meetings, small focus groups, and interviews. So participants could keep the level of privacy they wanted. Researchers asked about experiences and thoughts about health care and kink.

In total, 115 people participated. Although they were mostly non-heterosexual (79%) and white (81%), they were also diverse in terms of age, experience in kink, and gender identity. 19% were gender non-conforming. Preferred kink role (dominant, submissive, or switch) was evenly distributed across the participants.

Despite concerns of stigma, 44 participants had visited a health care provider for a kink-related concern. 38% were “out” to their provider about practicing kink.

Themes

When researchers analyzed the data, they saw five themes emerge:

  • Physical health
  • Sociocultural aspects
  • Stigma’s impact on interactions with physicians
  • Coming out to health care providers
  • Kink-aware medical care

Physical health is perhaps the easiest aspect to grasp. Many of the practices in kink can impact health. The most common injuries in this study include bruising and related trauma, broken skin, nerve damage, fainting, burns, and needle-sticks (and other blood exposure). Despite these risks, some participants reported better physical health because of kink. They felt better about themselves. So they took better care of themselves.

As part of taking care of themselves, they wanted specific testing. Participants wanted the ability to have more frequent or complete STD or blood-bourne disease testing. They wanted testing based on their own individual risks. Not testing based on the population at large. Population risks often simply didn’t apply. It’s like pregnancy testing a lesbian who’s never had sex with a man.

Most said they got health information from their communities, not physicians. Why? Certainly they did want good health information. They especially wanted individualized medical care so they could play safely. So why get information from the community? Because they had a lot of fear of stigma from medical professionals. And because healthcare professionals don’t often know about kink, they could get better knowledge from the community. Groups like the Society of Janus exist specifically to spread knowledge.

Participants interacted with healthcare professionals differently because of the fear of stigma. They hid their activities. Some even gave false information. Others delayed appointments until bruises faded, or tried to hide marks from their play.

One area of particular concern was the fear that kink would be confused for domestic violence. Health care providers are often taught that “Bruises = abuse”. This is not always the case. Women in particular were afraid of this confusion. Delays in seeking health care were commonly reported.

Those who did come out to their health care provider, and they did have good experiences. However they were also in the San Francisco Bay Area. San Francisco is well known for being an accepting place. So participants suspected their positive experiences were probably unusual.

How can health care providers do better?
Kink Pride Flag in San Francisco

Kink Pride Flag in San Francisco

Participants in the Kink Health Project brain stormed ways that the medical profession can serve their needs better. Here are some:

  • Differentiate between domestic violence and consensual activities
  • Ask open ended questions about sexual behavior
  • Individualize screenings for sexually transmitted infections and blood-bourne infections
  • Acknowledge alternate family structures, including multiple partners
  • Provide non-judgmental counseling on decreasing risks
What can a kinky patient do?

So what can a kink-oriented patient do to potentially improve their experience in health care?

  • Consider coming out to your provider. This is an incredibly individual decision, however. Only do so if you think you’ll be safe
  • If and when you come out, give that provider resources. TASHRA is probably the best resource to start with.
  • Emphasize your desire for safety and the consensual nature of your activities. A health care provider’s first concern should be your safety. They need to know that no one is truly causing you harm.
  • If you need to, ask for a referral or seek another opinion. Not all providers are going to be comfortable treating kinky patients. It is, however, their responsibility to refer you to another provider if they’re not able to provide the care you need.

And remember: You deserve to have a health care provider who treats you with respect.

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

Mar 062017
 

Lesbian, gay and bisexual (LGB) high school students are at higher risk for suicide than their heterosexual peers. The reasons are complex. The facts are simple. In the US in 2015, 29% of LGB youth report attempting suicide in the past year compared to 6% of their heterosexual peers. LGB youth also have higher rates of depression, anxiety, and non-suicidal self injury. Why? One of the main culprits is stigma.

It is still not a “good” or “normal” thing to be LGB in the United States. LGB people are very much in the minority. They are targets for discrimination and violence. All of this is part of stigma. There are different types of stigma. Structural stigma is policy, rule, and law based discrimination. Marriage inequality was one of the most talked-about forms of structural stigma.

If poor mental health outcomes like suicide attempts are partially because of stigma then we would expect changes in those mental health outcomes after a change in stigma. In other words, if marriage inequality is one way that society says “LGB is bad” and drives adolescents toward suicide, then when marriage inequality goes away adolescents should have fewer suicide attempts.

And that’s what the researchers in this week’s study looked at. They asked: Did youth suicide attempts go down after legalization of marriage equality?

The Study

The researchers looked at data from the Youth Risk Behavior Surveillance System (YRBSS). The YRBSS is a survey done by the Centers for Disease Control every 2 years. It’s conducted in 47 of the 50 United States.Among other things, the YRBSS asks about number of suicide attempts in the past 12 months.

They looked at data from 1999-2015. 2015 is before country-wide marriage equality. So instead of looking at national data, they looked state by state. They compared suicide attempts before and after legalization in that state. They also compared suicide attempts in states that legalized and in states that did not legalize in the same year.

In addition they compared straight suicide attempts to LGB suicide attempts. Only 25 states were actually asking about sexual orientation by 2015, so this part of the study was limited.

In total there were data from roughly 760 thousand adolescents. 12.7% of students in states that asked about sexual orientation identified as LGB. 2.3% were gay/lesbian, 6.4% were bisexual, and 4% were uncertain.

8.6% of all students had attempted suicide in the past year before marriage equality. That dropped by 0.6% to 8.0% after same-sex marriage was legalized. If we extrapolate out, that’s roughly 134 thousand adolescents who did not attempt suicide after marriage equality.

For LGB students the difference was even more impressive. Out of 231 thousand adolescents, 28.5% had attempted suicide in the past year prior to legalization. After marriage equality it dropped by 4.0% to 24.5%. That’s a relative reduction of 14%.

And for the statistically nerdy folks among us, those results were statistically significant at the p = 0.05 level.

Nice data, but what does it mean?

Here’s the bottom line. There were fewer suicide attempts in all high school students after marriage equality. This was especially true among LGB youth, but the effect was seen in all youth.

There’s a very important lesson in these results. Legal policies and the message those policies convey have very real effects on health. And it’s not just as simple as policies like mandatory vaccination and the resulting drop in infectious diseases. Denying same sex couples the right to marry and all the legal protections associated with marriage sends the message that LGB people are inferior. And our youth hear that. It has very real effects on their health. It’s behooves us as a society to examine other policies like employment and school protections to see if they send the same message.

From a personal perspective, these results are not surprising. While the Defense of Marriage Act was still law, even as a teenager I was very aware of what that meant for my legal rights. I knew about, and was distressed by, the lack of hospital visitation rights and insurance coverage. As an adult the knowledge that I have the legal right to make medical decisions for my wife without question is immensely comforting. We have a long way to go on other matters, but this one small step makes a difference.

Lastly, never underestimate suicidality. If you or someone you love is in crisis, the Trevor Project is an LGBT friendly suicide hotline for youth. Adults who need assistance can find the right hotline for them here.

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

Feb 202017
 

“Brain tumor” are two words that strike fear into most hearts. They conjure images of thin patients with heads shaved and large fresh scars on their heads, of rapid neurological deterioration, and of sick children. Not all brain tumors are the same, however. Some are aggressive malignant cancer. Those are the bad actors like medullablastoma. They grow and spread quickly, and are very difficult to treat. Others are benign. These grow slowly, and either don’t spread or are very slow to spread. Benign brain tumors include meningioma, which we’re talking about today.

Meningioma is a tumor of the meninges, a thin layer that covers the brain. Meningiomas are benign. They don’t tend to metastasize (spread to other areas of the body). Instead, they grow and can grow enough that they squish parts of the brain. This causes headaches, loss of vision, and changes in thinking and mood.

Brain tumors are rare. So are meningiomas. They affect roughly 97/100,000 people. We don’t yet know exactly what causes them. But by looking are who tends to get them, we have some guesses. Exposure to radiation of the head seems to increase the risk. So does having a condition called Neurofibromatosis II. And meningiomas are more common in cisgender women than in cisgender men. Why? Because of hormones. Like breast cancer, meningioma can grow in response to estrogen or progesterone. Cis men who have been treated for prostate cancer (involving androgen deprivation therapy) are at higher risk. And perhaps trans women are too.

Today’s Paper

And that’s what brings us to today’s paper. We’ve covered meningiomas in trans women once before, but it’s time to take another look now that we have more data.

Today’s paper discusses three new cases of meningioma in trans women. In total now, 8 cases have been discussed in the medical literature. It’s a very small number, but enough to start seeing some patterns.

Of these three new cases, all were over the age of 45, were post-vaginoplasty, and were on cyproterone acetate along with an estrogen. All had surgery to remove the tumor, and they did well. The decision to continue hormone therapy was made on a case-by-case basis.

The authors noted a previous paper that found that cyproterone acetate was associated with meningioma. This was particularly true with doses above 25mg a day. Among the eight cases of meningioma in trans women in the literature, only one was not on cyproterone acetate. Doses ranged from 10mg to 100mg, with most being on 50mg or 100mg. The authors also found reports of higher rates of meningioma among people who use progesterone-like medications. Removing hormone therapy (especially cyproterone acetate) frequently helps to shrink the tumor.

What should you do with this information?

First, don’t panic about meningioma. It’s rare and benign.

There is no screening for meningioma. Instead, if you have any unusual symptoms like changes in your vision or headaches, talk with your doctor.

If you are a trans woman, consider taking the smallest dose of hormones possible. In general, high doses increase side effects and don’t help with transition. If you are diagnosed with a meningioma, have an honest conversation with your doctors about your hormone therapy.

And, of course, be sure to live as healthy a life as you can. Don’t go jumping into volcanos or nuclear power plants. Eat a balanced diet, get some exercise, avoid most drugs, and take care of yourself.

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