Episodes
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In which Sam, Richard and Gaby start SEASON 3 off by talking about the ways that testosterone (or T!) impacts voice – from anatomical changes to the vocal cords, to the expected time ranges until changes are "complete," to what to expect while your voice is in transition. All accompanied by best practices and pro-tips from our guests!
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For full show notes and transcripts, please go to www.queerhealthpod.com.
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Missing episodes?
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For full show notes and transcripts, please go to www.queerhealthpod.com.
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For full show notes and transcripts, please go to www.queerhealthpod.com.
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For full show notes and transcripts, please go to www.queerhealthpod.com.
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For full show notes and transcripts, please go to www.queerhealthpod.com.
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For full show notes and transcripts, please go to www.queerhealthpod.com.
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For full show notes and transcripts, please go to www.queerhealthpod.com.
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For full show notes and transcripts, please go to www.queerhealthpod.com.
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For full show notes and transcripts, please go to www.queerhealthpod.com.
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Our usual vocabulary round-up:
This episode is going to talk about queer women - but more specifically specifically on folks with vaginas having sex with other folks who have vaginas. Our subject matter is deliberately focused. Because we’re discussing sexually transmitted infections (STIs) and the things that can cause them, we have to be precise (and consistent) about what parts are being used during sex, and what’s happening to them. So in other words, we’re focusing on folks with vaginas because it allows us to be scientifically accurate about the risk of transmission and infection. But this is by no means a reflection of who is included within the community of queer women! For more on that subject, check our previous podcast episode.
Who’s STI and what’s she doing at this party? “STI” stands for “sexually transmitted infection” and is the cooler, hipper, Gen Z cousin to the millennial term “STDs” or “sexually transmitted diseases” The term “STI” has become favored within the medical community because: There’s stigma associated with the word “disease” Because things like gonorrhea and syphilis often have no symptoms. And so “infection” is a better word to reflect that fact
Why are we doing an episode on STIs for queer women with vaginas?
Queer women are often excluded or ignored within conversations/teaching about sexual health and STI risk
Why isn’t this more prominently discussed and understood? Queer women’s sex is ~varied~ (in terms of what anatomy is involved or what’s in what hole, if any). This makes it challenging to ascribe a standard amount of “risk,” since that risk could vary drastically between two queer women. The scientific literature on this subject isn’t doing us any favors, either. Papers that look at queer women’s STI risk use a variety of labels to define queer women, and it’s hard to find consistency or specificity. Lastly, there’s a widespread conception out ~in the ether~ that queer women have negligible (meaning, close to zero) risk of getting/giving STIs. So, some folks believe the subject isn’t worth spending time on.
The bottom line(s)
For folks with vaginas, the risk of STIs isn’t zero One study suggested that rates of chlamydia between queer women with vaginas are comparable to the rates in the general population Moreover, queer women with vaginas are susceptible to the same infections that other folks are at risk for, such as: Herpes Hepatitis A Trichomoniasis
Note: HIV is unlikely to spread by using fingers or toys, but queer folks with vaginas may still be at risk for HIV if they are having condomless sex with partners with penises, sharing needles, or participating in sexual or erotic blood play.
So while folks with vaginas who exclusively have sex with other folks with vaginas do have lower STI risks, there’s number of factors consider: Number of partners (since multiple partners provides more opportunities to introduce new bacteria) Whether there are penises present Whether toys or fingers are being inserted How and where folks put their mouths or tongues. Fewer things being inserted likely means lower risk of transmission, but it’s definitely not a zero-risk situation.
This is why, at the end of the day, we always recommend having an individualized conversation with your healthcare provider about your sexual practices.
BV: the STI that isn’t an STI
BV stands for “bacterial vaginosis”. It happens when the normal (read: healthy!) bacterial environment of the vagina gets thrown off balance, and can cause symptoms like changes in discharge, changes in odor, or itchiness.
It is more common in queer folks with vaginas by a factor of 2, which is thought to be related to: Whether a partner has BV already Oral sex (which can bring extra-vaginal bacteria to the vagina) Menses
What to do? None of us recommends going out of the way to prevent BV, but cleaning any toys you share with other partners is a great thing to do in general and will likely help reduce the risk of getting BV. If you know you have BV but don’t have symptoms (and aren't pregnant), Dr. Garment does not recommend treatment. If you do require treatment - either because of symptoms or because you are pregnant - then a short course of antibiotics usually solves the problem for most.
HPV - the sexually transmitted…virus?
What is HPV? HPV stands for “human papilloma virus” which is a virus that causes the overwhelming majority of cervical cancers. Mostly, HPV can be cleared by your immune system. The problem comes if (for whatever reason) your body isn't able to get rid of that infection. In these cases, HPV hangs around for too long and over years, it can start to cause changes in the cells of your cervix which, over time, can lead to cervical cancer.
What does this have to do with queer women, again? HPV can be transmitted in all sorts of ways – from a penis to vagina, from a mouth to any kind of genitals, from a mouth to a rectum. It can also be on toys, it can be on fingers. Said otherwise: queer women can get HPV from sex! In fact, when you look at HPV rates in, women who have sex with women, compared with women who identify as heterosexual, the rates are not so dissimilar in terms of the rate of HPV.
HPV prevention On a day-to-day basis, cleaning toys between use can help reduce the risk of transmission (if you're sharing your toy with more than one partner). You can check out if you're eligible for the Gardasil vaccine, which reduces the risk of getting HPV in the first place. Lastly, the cornerstone of all STI prevention is testing. In the case of HPV, it's going to be testing for the changes that it causes to your cervix via a pap smear.
Cleaning toys: a brief ode to the top rack of the dishwasher
Toys made of silicone or metal can be run through the top rack of the dishwasher.
Anything with a motor can be washed down with antibacterial soap.
Toys made of porous materials (eg, hard plastic) are difficult to clean fully. In these cases, barrier protection (eg, a condom) can limit transmission.
Dental dam…to the rescue?
Things dental dams are: Made of polyurethane Meant to be placed over par the vagina or anus while engaging in oral sex to reduce the fluids that are being transmitted between partners (and therefore reduce the number of potential STIs)
Things dental dams aren’t: Attractively named Used very often
Things dental dams may or may not be: Effective It’s hard to find data on this, TBH How protective they are (or aren’t) may be more a product of how consistently or correctly folks are using them An all-encompassing form of protection After all, queer women have many kinds of sex where barrier protection with a stretchy piece of latex won’t be helpful! At the end of the day, this is (as always) about knowing the risk of your individual sexual practice
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What’s in a (queer woman’s) name – we mean, identity label?
Some terms that are typically used to describe the community of queer women:
WSW, or Women who have Sex with Women: a medicalzied term that focuses on behaviors, not people
A public health term that focuses on behaviors (e.g., sexual acts) rather than identity
Not a term most (if any) would use to describe their sexual identity
Implies cisgender women having sex with cisgender women (which is not inclusive of the entire queer women’s community!)
Lesbian, bisexual, and pansexual women
Not medicalized. These are identity terms, not terms that focus on behavior
Notably, these terms aren’t all-inclusive, and don’t capture everyone in the community
Ultimately, there is no perfect label neatly who the episode is “for”
Focusing on behavior (“WSW”) erases identities and stigmatizes behaviors
Focusing on identities (lesbian, bi, pan) can exclude folks
Lastly, other elements of identity (e.g. race, ability) often factor into gender expression and sexuality in ways that are complex, numerous and expansive
Besides, language is fickle and changes with time!
Mythbusting queer women’s sex
Scissoring: is a thing, though over-represented within the straight conceptions of queer sex.
It hurts Jessica’s back, and (based on anecdotal evidence) doesn’t seem like a common sexual act
In contrast, tribadism is more common face-to-face body position where genitals are rubbed together
Penetrative sex
Is not off the menu for queer women, should they want to incorporate it into their sex lives
Very much an individual preference (the overall theme of this episode!)
Topping and bottoming
Some folks may find more satisfaction in giving sexual pleasure (tops), others in receiving (bottoms)
But these dynamics are…well…dynamic, and can vary with time or sexual partners
User beware: often we retrofit stereotypes (e.g. tops and bottoms) onto how folks find pleasure
Orgasms
Not a necessary component of a sexual experience
Do not need to happen for pleasure to also happen
Death to “Bed Death”
Lesbian bed death
A sexist, pathologizing and inaccurate trope in which two women in a long-term relationship will eventually stop having sex altogether.
May be rooted in a different context within queer history - one where queer women felt pressure to stay together in order to subjugate their own desires for the wellbeing of their larger community.
So, what’s actually going on?
Dips or lulls in one’s sex life can be normal, though many folks might feel they “should” be having more regular sex due to external societal standards and pressures.
Your mind and body have a relationship! Stress (capitalism, homophobia, emotional disconnect with your sexual partners) can take away from sex drive, which - let’s just say it again - is totally normal.
All that being said, some challenges with sex may be medical in nature (for instance, vaginal dryness) - in which case
Centering pleasure, joy and ecstasy
Get specific
Kink - an umbrella term that includes (but isn’t limited to) BDSM fetish, voyeurism, exhibitionism – provides a model for how folks can use language to communicate what they want (or don’t want) to their sexual partners
“Brakes” and “accelerators” can be useful vocab to identify things that push pleasure forward or slow it down (but do not negatively impact)
You’ve got resources
Healthcare providers - particularly within primary care specialties like OB/GYN, internal medicine and family medicine - can be a great first-line option for those who are open to it
That being said, we acknowledge that not all folks will be comfortable or able to talk to their providers about their sexual satisfaction. Other professionals - such as pelvic physical therapists, psychologists, or social workers - may be better fits.
It can be tough to have these conversations, but the payoff may be worthwhile
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As always, some definitions up front.
Non-binary is a space that lives somewhere outside of male and female, or occupies both genders in varying degrees simultaneously.
For most folks, non binary falls under the identity umbrella of transgender, but as always, this is not universal.
Some sibling terms: gender queer or gender nonconforming
Why discuss non-binary care on its own?
We know that non-binary communities have a unique set of healthcare disparities and health care experiences.
We also know that non-binary individuals have different health outcomes, healthcare needs, and healthcare experiences when examed separately from the binary transgender umbrella.
Gender is a social construct. This matters to medicine because it impacts how we see non binary individuals and impacts their ability to navigate health care spaces
Non-pharmaceutical gender affirming steps
Stuffing: often rolled socks or a phallic shaped object in one's pants to present the image of a fuller package
Tucking - people with penises to tuck their testes into their groin and often tape their phallus to create a flatter appearance in their crotch
Check out some health tips at Callen Lorde’s Safer Tucking pamphlet
Binding - Wearing a special garment, cloth or other material to flatten chest tissue or contour one’s body
Some tips, consolidated from Callen Lorde’s Safer Binding pamphlet:
Max out your daily binder wearing around 8 to 12 hours a day
Avoid duct tape and ace bandages as these can cut into skin
Use undershirts or body powder to minimize the effects of sweating, like rashes and chafing
Hormones (specifically microdosing)
On the “micro” in microdosing:
It implies a binary as the “standard” size. We don’t love that implication, but it’s the word we heard from the community.
Other similar words we like more: “low dose”.
Our (improved) slogan: same hormones, different dosing
Misconceptions:
You can control the changes you going to get with a smaller dose
The effect size will be smaller (i.e. proportional to the dose)
Small doses mean non-permanent effects
General approach from a provider standpoint:
Go slowly and monitor effects
Expect a time frame of months to years to fully realize any changes
Constantly re-assess
Informed consent and microdosing.
The lack of studies on microdosing makes this difficult. Know that taking hormones at these doses leaves some of the risks and benefits that are known at other doses up in the air.
What to know about testosterone hormone therapy: here.
What to know about estrogen hormone therapy: here.
Surgery, briefly.
It’s a la carte.
Any gender affirming surgery can be part of someone’s non binary affirming care.
Something we don’t love: to get a surgery approved by insurance, non-binary folks often have to resort to the binary - for example, someone may have to state they claim a male gender identity in order to receive the coverage for top surgery
Primary care for a non binary individual
Good gender-affirming care is grounded in good primary care!
Regardless of someone’s need for medically regulated medications (hormones) or procedure (surgeries) high quality primary care will include discussion of anatomy, gender identity, and sexual orientation.
For non binary folks, the binary expectations of a clinical space can be a barrier. From the paperwork to the social understanding of binary gender that health care workers bring with them to the clinical space - the reality of anticipated or experienced stigma is real.
Providers who are skilled in LGB health or transgender health may have shortcomings when it comes to understanding the goals and lived experience of non binary health care consumers.
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Heads up
This episode is best listened to (or read) after our other one about the intersex community.
Content warning – some of the discussion around surgeries is considered violent given their non-consensual nature
What makes a surgery medically necessary?
A “rule of thumb” definition is: will not intervening cause the loss of life or limb
Some gonadectomies – or the removal (-ectomy) of the gonads (anatomical precursors to the ovaries or testes) – have been justified to avoid the tissue becoming cancerous.
But, a 2016 consensus paper on DSD care said there is “poor evidence” to support that
Definitions:
Hypospadias: when opening of where urine comes out is not at the very tip of the penis.
Congenital Adrenal Hyperplasia: where a missing enzyme creates more testosterone and the clitoris is often enlarged
There are others, but these are two of the main variations that folks who have experienced non-consensual surgeries have.
The past, the present:
1950s-1990s, John Money: a child’s gender identity would follow the anatomy of its genitalia, so if you change the genitalia you resolve any ambiguity
Most current surgeons who perform these reject the reasoning presented in the historical paradigm, and they know that genital appearance doesn’t dictate gender identity
Now: many variations in genitals are defined as pathologic due to cultural definitions and expectations that people will want to have heterosexual penetrative sex.
Example: a penis that can’t penetrate isn’t a penis
Example: a clitoris that is too big….is too big
One current common justification for surgery is that it can alleviate the emotional distress from someone’s variation
An ethicist’s takedown of surgeries performed on intersex minors
Surgery done for a variation that isn’t life or limb threatening and done to improve psychosocial (meaning emotional, stigma-based, psychological) suffering is NOT ethical.
Don’t forget: there ARE surgeries performed on infants with DSD variations that are medically necessary – these ethical concerns don’t apply to those
Parental stress is not a medical emergency, and parental stress does not define medical necessity (as per 2016 consensus paper, a landmark paper in intersex policy).
Four ethical reasons that infant and child DSD surgeries are a no-no:
o High potential for harm from invasive surgeries, especially on fertility and sexual pleasure
o Surgeries of this nature are not routine procedures, like a vaccine; rather, they are closer to a procedure affecting fundamental rights like sterilization. So, there is an inconsistent absence of legal oversight
o There is almost no outcome data that supports the justification of psychosocial alleviation for these surgeries
o Ongoing justification for surgery: ease parental distress and promote bonding with children. Two issues: 1) not an agreed-upon conclusion, and 2) still isn’t an ethically sound reason to subject an infant or child to a highly invasive surgery
o The big concern is: was this surgery justified by psychosocial reasons?
Surgeries: making medical care more complicated
After surgery, many folks need follow-up medical are
Having your gonads removed during surgery means you will have to hormones that would have otherwise been made in your gonads
Some folks may need follow-up procedures on the body parts that were part of the original surgery
Why does this suck?
First off, we’re talking about American health care, so needing life-long insurance (to see doctors for the consequences a surgery performed before you even knew what the term “insurance” meant) makes things hard.
Folks age out of pediatric practices, or move, or folks retire – so continuity of care is also quite challenging
Dr. Gregorio pointed out that there are only a handful of academic centers that can manage folks with surgical complications at the standard of care that they warrant.
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Overview:
What is gender affirming surgery?
> A range of surgeries that includes the removal or addition of breast or chest tissue, creating a vagina and labia, creating penile tissue, or creating a penis. A gender affirming hysterectomy is also possible. Don’t forget facial surgeries!
> The most common ones are chest and facial surgeries, but given the difficulty in accessing genital surgeries we talk about those a little more here
Pre-surgery:
1. First up: information gather
> Online forums are great! But buyers beware...bias. It's still an online review forum, so now that its biased in who chooses to participate in online forums or share pictures there
> Surgeon’s website, realizing that they only choose the best photos, are also a good place
> Look for folks with similar bodies and skin colors to hear their stories
3. Find a good primary care doctor
> Primary care providers will help navigate any possible changes in hormones post-op and be there to set you up with any resources for possible post-op stress or depression
> In addition: surgery stresses your body! A PCP can find ways to get your medical care in a good place before surgery to make the recovery process as smooth as possible
> E.g. having your blood pressure, cholesterol, and/or diabetes optimized
> Also, quitting smoking. Many surgeons will do a lab test to see if someone is smoking. Called cotinine testing, it's a breakdown product of nicotine and tells the health care provider if someone recently smoked nicotine.
> FYI: there is some data that says folks who had access to primary care prior to beginning or completing puberty, including hormone blockers, are less likely to get surgery because the tissues they want surgically modified never developed
> For example, someone who took hormone blockers never developed breast tissue so never gets breast tissue removed surgically
4. Find a surgeon
- Where to look?
>> For some folks, the internet is a great starting point
>> Others will be able to receive referrals from PCPs
- Some things to look for regardless of where you find your surgeon:
>> Make sure they are board certified
>> Someone with experience providing these procedures to trans individuals.
>> Do they take your insurance?
5. Hair removal! If this is relevant to the surgery being planned.
- Get a head start - it often requires upwards of 10 sessions and takes about a year
- Look for folks who have experience in clients with your level of melanin
- What kind of hair removal? Laser hair removal or electrolysis (more about this in our full show notes on our website).
6. Getting mental health providers to provide a letter for your insurance clearance
- Let’s start out by saying: this is a controversial barrier to care that is often seen as a transphobic and discriminatory gate-keeping measure (almost no other surgery requires this step) ...but, if someone is making you see a mental health provider know that surgery is stressful and there are real resources a mental health provider can offer
- Heads up: this can take a while. And double heads up: if you are having bottom surgery you will almost certainly need TWO different mental health provider letters
7. Submit your mental health letters to your surgeon, who submits them to insurance. Cue the hours of hold music.
Post-surgery
- Set expectations
>> Post-op depression is common! It's not unusual that with big changes and the physical stress to experience changes in mood in unexpected ways
>> There is a healing process. It can take months, depending on which surgery you have
>> Your physical comfort and activity level will take time to return to baseline
- Seek out caregivers before hand to help you afterwards
- Dilation (this is relevant only to vaginoplasty)
>> Dilation is done to maintain depth and width in a newly constructed vagina
>> Expect to dilate weekly throughout your lifetime in order to have receptive vaginal intercourse
>> To that point - not everyone will share a goal of keeping an open vaginal canal. If that’s the case for you, we encourage you to check in with your healthcare provider about what this means re:dilation
- Pelvic floor physical therapy
>> Helps with healing, pain, urinary issues, dilation - a win!
>> Ask your surgeon for someone who has worked with people who have had your surgery before you, and who will be affirming!
- Sexual satisfaction
>> Is totally defined by the person experiencing it, and different folks will have different goals for their own sexual satisfaction
>> Lubrication may or may not happen, and may or may not be enough to make penetrative sex comfortable
>> Orgasming - can take time, practice, and getting to know your new body. Again - ask your surgeon honest questions!
>> If you use the body part for sex, get it tested for STIs
- Hormones may change - it really depends on the surgery, so talk to your provider
Some final context:
To quote our community voice: having surgery is not everyone’s end goal. Everyone’s journey with any gender affirming medical care is their own!
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History of the Blood Ban: A summary timeline
1981: first patients with HIV described in the medical literature
1983: Test for HIV arrives; 1986: FDA institutes blood donation ban for gay and bisexual men
1997: FDA changes langage from lifetime ban to “indefinitely deferred” (we’re underwhelmed by that too…)
2014: FDA changed the policies to a 12 month deferral, which is an actual deferral. So no sex for one year to give blood.The FDA’s reasoning here.
You’re talking about blood but you keep saying plasma?
Fair point. Blood has two main components. Plasma is the watery part that also has some blood borne diseases and carries antibodies. This information applies to any type of blood or plasma donation.
What’s scientifically based vs discirimation?
Advocacy orgs: like behavior should be treated alike
Meaning: those screening for blood borne illnesses should use individualized risk assessment on questionnaires
Meaning: don’t equate gay and bisexual men and “risky sex”, anyone who has penetrative rectal intercourse (ie the behavior) should be asked about it
Meaning: identity is not a scientific substitute for health behaviors, thinking so sets you up for discrimination and stigma
Public service announcement: oral sex, aka blow jobs, aka head - very low risk for HIV (<1% per the CDC, “theoretical” to others) - should not be considered a behavior for which to defer blood donation
What’s the risk of getting HIV from a blood transfusion?
Same risk as getting into a plane (that crashes) or getting hit by lightning in a thunderstorm (stay inside folks!)
Some numbers: risk estimates range from:
1 in 2,135,000 (the higher estimate)
1 in 909,000 – 5,500,000 (the lower estimate)
Advocates want a three month deferral for gay and bisexual men - where does that number come from?
Window period! AKA the amount of time it takes for the test to be able to detect the virus once it's inside someone's body.
Explain! There is a lag time between when the virus enters someone's blood to when it has copied itself enough to be detected by medical testing.
The most up to date testing can see HIV in someone’s blood 5 to 11 days after acquisition.
Q: So….why three months if the test works in about a week?
A: HIV isn't the only thing we test for. And testing exactly at the threshold of our best test is cutting it too close for the regulatory agencies.
Reminder: U=U applies to sexual practices - not to blood donations.
Questioning Questionnaires
It is discriminatory that the questionnaire considers an identity the same thing as a behavior. It sees gay and bisexual identity as the same thing as engaging in anal intercourse. (Just ask high school Sam - not true!)
Another nuance: many gay and bisexual men who don't have anal sex (again, see Sam in high school) and are at less risk than their heterosexual colleagues when giving blood.
What's going on about this: The FDA is (slowly) studying implementing a questionnaire that includes individualized risk assessment and making sure this keeps the blood supply safe.
HURRY UP FDA! Well, Dr. Anani said it best: “It's not their job to consider the feelings of others. It's their job to protect the blood supply. So from their perspective, to hell with the feelings.”
For now...#FeelingsHurt, the future goal being to ask specific questions respectfully to make blood donation and transfusion safe, less biased and less discriminatory.
So is the blood bank going to start calling me when this is all changed?
Not anytime soon. The FDA doesn't make changes without the data behind it and studying this data, studying how well screening questions that ask about specific individual sexual behaviors work is going to take a really long time.
Oh and this: blood centers don't want to scare away straight donors with invasive questions about butt sex.
Q: Is that a discriminatoy dobule standard that favors straigh people at the risk of stigmatizing queer people donating blood?
A: YES!
A non-discriminatory future of blood donation is likely a three month deferral period. Meaning - anyone who has anal intercourse would have to wait three months from that to give blood.
This accounts for emerging new diseases that could get into the blood supply that we may not know about.
We test for more than HIV - so just going by HIV’s best test doesn’t cut it.
The FDA wants to make sure asking about butt sex rather than identities associated with it doesn’t scare donors away.
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Getting the lingo down
Note: tons of great content similar to this can be found via InterAct.
Intersex: term used for a variety of conditions in which someone is born with urologic, reproductive or sexual anatomy that doesn't fit the binary definitions of female or male.
Differences of sex development or DSD:
The medical community’s umbrella term for a handfull of medical diagnosis where a biological characteristic or anatomical structure does not meet binary definitions of male or female.
Not all folks with a DSD diagnosis claim intersex as an identity!
One last point: who does and doesn't identify as intersex is always political. It's often based on how people receive the medical framing of the diagnosis. Some intersex advocates expect that in a few years' time, calling intersex a DSD condition will sound like calling someone's gender identity or sexual orientation, a psychological condition.
Anatomic variations: a big-picture view
The overall incidence of any variant of sex development is estimated to be as high as 1.7% of the population (others make lower estimates). This is as common as folks with naturally red hair.
These variations can show up on a few different biologic levels
Genetic: e.g. Kleinfelter syndrome and Turner syndrome
Hormonal: e.g. congenital adrenal hyperplasia or androgen insensitivity syndrome
Because we talk a lot about AIS in this episode, here’s some more detail: it's a condition where individuals have XY chromosomes. But the receptor for testosterone has a slightly different shape, so testosterone doesn’t dock at the receptor. So the organs and structures formed by testosterone signaling are not there.
Anatomic: e.g. gonadal dysgenesis (the gonads - or testes or ovary precursors don’t form)
Variations can be discovered at different time points throughout someone’s life
Genetic screening or fetal ultrasound
Time of birth
Childhood, often while investigating a hernia or abdominal mass
During unrelated abdominal surgery, where sometimes undeveloped gonads are found
As part of the medical workup when someone who expects to get pregnant cannot
The role of hormones within intersex care
The biology of hormones
Body shape, voice, hair growth and distribution, bone strength, muscle development - these all depend on hormones (like testosterone and estrogen)
In binary individuals, these hormones appear around age 5 or 6 and increase around puberty.
How does this relate to healthcare for intersex individuals?
TL;DR: it depends on the individual. There is no set regimen or hormone therapy for someone based on a particular DSD variation.
Some individuals with an intersex condition identify as a gender other than that assigned to them by the time of puberty. Hormone therapy can help alleviate the distress which some folks may feel about their body, and help them achieve their desired form of gender expression.
As a reminder: just because someone is intersex doesn’t mean they are transgender.
Hot take: having the correct amount of hormones for the gender and body that you wish to have is very important.
Shifting paradigms of clinical care for intersex folks
For many years, the medical community routinely practiced non-disclosure with intersex patients
The basic idea behind non-disclosure: clinicians purposefully choose to NOT tell an intersex individual about their variation. The person in question will instead be socialized as either male or female (based on whichever gender “made more sense” given their anatomy).
The ideology supporting the practice of nondisclosure goes back to the 1950s, when a psychiatrist named John Money at Johns Hopkins said nurture would always override nature.
Why we don’t like it:
Non-disclosure forces intersex individuals to conform to rigid societal standards, compared with the driving principles of medicine, which are beneficence, autonomy, and justice.
Also, clinicians should avoid lying to their patients and should instead tell them the entire truth about their body
Non-disclosure is (thankfully) falling out of favor, instead replaced by the notion of shared decision making when it comes to clinical care for people with intersex traits or DSD
In 2006, a consensus statement came out saying that patients with DSD variations and their families should be told the full truth. This was affirmed again in 2016 update.
Though as Dr. Dalke points out, this movement away from non-disclosure is itself a relatively recent and, frankly, radical evolution in care
Care for intersex folks: areas for improvement
The language and framework that clinicians use when talking about anatomic variations
Medical language can (and should) present the specific biology of intersex folks in a way that isn't pathologizing
For example, DSDs can be framed as variations - just like red hair vs. blond or brown. (Can you tell we are obsessed with red hair?)
Clinicians can partner with their patients to help them find whatever language feels most affirming to them
The assumptions made by the healthcare system about people’s bodies, anatomy, sex, and gender
Some examples: health forms that only list binary gender options, clinicians that assume a female-presenting individual can become pregnant
An aside to say that these assumptions are damaging for others, too – people who are trans and non-binary and people who have had organs like their breasts, uterus, or testicles removed because of cancer
The physical exam
A person’s body and biology aren’t a spectator sport
Please, kick trainees out of the room!
Ok, so what does it feel like when things are patient-centered?
Patients should feel as if they are in control of every decision that's made in their care.
A provider who's really trauma informed is going to check to make sure that a person is giving consent to every aspect of a clinical encounter.
A person should feel empowered to say no to something or anything at any point during a clinical encounter or clinical decision making and not feel as though they're doing something wrong or they're going to be punished by the healthcare provider for this.
Again, language matters: diagnosis and identity
Maria, our community voice, says it best: For most of my life it was a diagnosis and it felt like a diagnosis and I felt different. I just felt different. When I found out I had XY chromosomes, that kind of took me in a new direction - when at your core, you're like, am I a boy? What is a boy? It made me question everything about my identity. And I felt like I sort of started at the bottom to build back up what my identity looks like and where my gender and my sexual orientation, my gender identity, where that all fits in.
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Some definitions
PrEP: pre-exposure prophylaxis - referring to a daily medication taken to prevent the acquisition of HIV
PEP: post-exposure prophylaxis - referring to a combination of medications taken after a potential exposure to HIV in order to reduce the likelihood of transmission
Who should take PrEP?
People who have condom-less anal sex
People who have sex partners they don't know very well or whose partners know they have HIV
People who come from communities that have a greater burden of HIV because of less access to care and other systemic barriers
Anyone who has had a bacterial sexually transmitted infection, like gonorrhea, chlamydia, or syphilis in the past six months
Why is PrEP special?
PrEP is a powerful form of prevention that allows people to have autonomy and make decisions about their own sexual health
PrEP is not only a medication that prevents HIV, but it's also a very emotionally significant drug for many. For those who feel the legacy of the AIDS crisis of the 1980s and 1990s, having an HIV prevention drug can provide agency and control
It can serve as a gateway into lent-term primary care (which we here at QHP are big fans of!)
A brief PrEP timeline
In 2012, Truvada (otherwise known as tenofovir/emtricitabine/TDF) - a medication previously used to treat HIV - was approved by the FDA for PrEP, or to prevent HIV.
It became apparent that Truvada as PrEP worked. The first big study looking at Truvada showed that daily PrEP lowered the risk of getting HIV by 92% if exposed.
Slowly but surely, the queer community got on board (with the help of groups like PrEP Facts). More and more people began using PrEP to prevent HIV transmission.
2019: a scientific trial called the DISCOVER trial published preliminary data
It investigated the possibility of a second PrEP medication, another HIV medication called Descovy (otherwise known as tenofovir/emtricitabine/TAF)
It also suggested that Descovy may have a better side effect profile
Based on the preliminary data, the FDA approved Descovy as a second PrEP option. Some folks started getting switched from Truvada to Descovy (with or without their consent).
At which point many people started wondering: which PrEP medication to opt for? Which is the better option?
Truvada vs. Descovy: the scientific data
When Truvada came onto the scene as PrEP, it did so with multiple large studies of high quality evidence and in multiple populations
iPrEx: a study that put Truvada on the map. Studied side effects and efficacy at HIV prevention in men who have sex with men as well as transgender women.
Partners PrEP: showed that Truvada was effective at HIV prevention within heterosexual couples where one partner is HIV+
Descovy, in turn, so far has less scientific literature discussing its efficacy as PrEP in a variety of populations
Basically, all we have is the DISCOVER trial - which only looks at cisgender men and some trans women
And note: up until 2020 (a year after FDA approval) the DISCOVER trial had not officially released its data, just a preliminary abstract
It’s unusual that Descovy was such a popular and widely-used option before the data was officially published – before healthcare providers could read the data for themselves and help their patients make informed decisions
In addition to the above differences in how the drug came to the market, Truvada has an additional study (called IPERGAY - you can’t make this stuff up)
This study demonstrates Truvada’s efficacy as PrEP “on demand” – meaning, taken in the days right before and right after a sexual encounter
Descovy, in turn, has no such data supporting its use as PrEP on demand
Truvada vs. Descovy: side effects
Truvada
Abdominal discomfort: observed in roughly 1 out of 5 people. Usually goes away on its own after two to six weeks on medication
Changes in kidney function (as measured via a substance called creatinine), largely reversible
Changes in bone density - also reversible once taken off the medication
Descovy
Based off of what we know about Descovy as HIV treatment, it can increase cholesterol, blood sugar levels, or weight gain, risk factors for the development of heart attack and stroke.
Unclear if these effects will be seen or will have impact on people’s health in the long-term when Descovy is used as PrEP given that the drug is dosed differently in this context.
The DISCOVER data also suggests that there may be fewer kidney and bone side effects -
So who actually should be taking Descovy as PrEP?
As of right now, the medication is approved in cisgender men who have sex with men. It is not approved for folks with vaginas, since that group was not studied in the DISCOVER trial.
Ultimately, the decision is an individualized one that depends on personal medical history and preferences. For example: for folks with kidney disease, Descovy may be a better option.
Long story short: it depends. Bring it up with your primary care provider! (And if you don’t feel comfortable bringing it up, we encourage you to find a care provider with whom you do feel comfortable – all while acknowledging that this is likely far easier said than done.)
A generic PrEP option
Truvada’s patent expired in 2019, at which point it became generic. How does having two PrEP options – one brand name, one generic – change the HIV prevention landscape?
The good
On face value, having a generic PrEP option seems like a good thing since it will increase financial access.
Additionally, having two options gives folks agency, which may increase PrEP uptake
However…
Having a fancy brand name option (Descovy) may stigmatize the generic option (Truvada). This is tricky for folks who only have generic options available to them.
One drawback is that the Gilead co-pay assistance programs will not pay co-pays so there may be some back and forth with providers, insurance and pharmacies as this transition occurs. However, there should always be an option to have PrEP covered.
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Definitions
Douching: technically refers to cleansing the vaginal canal with liquid
Enema: delivers water or a solution directly into the rectum to loosen fecal matter and stimulate a bowel movement (i.e. pooping). Can be done as a way of relieving constipation or as a way to “clean house” before anoreceptive sex
Ways to douche
1. Bulb enema: a common “over the counter” option you can find at drugstores. Includes a bulb (filled with fluid) attached to a nozzle which can be inserted into the rectum
Can buy reusable rubber enemas that you fill with tap water, or can buy brand names (such as Fleet enemas) that come pre-filled with solutions designed to help stimulate a bowel movement - more on these solutions later.
Bag enema:
A rubber bag with a small tube attached. You fill the bag with water, lock the tube shut with a small plastic piece and insert the other end of the tubing into the anus
A great option for folks who need to be in certain positions while douching or have mobility differences
Shower nozzle:
What it sounds like. Beware of the high velocity and large volumes that come with shower nozzle douching. These can be damaging to the rectum!
Best practices – or, how to ace your douching exam
1. Dietary fiber
What to buy: something with psyllium husk or high soluble fiber as the active ingredient. No need to buy brand names (all you’re paying for is the muscular torsos on the labels, which...fair)
The dose: scale up slowly (every other day) to avoid bloating, cramping and other side effects. Increase gradually, and goes best with water
2. The actual gymnastics – er, mechanics
Positioning: bent at the waist (this straightens the rectum, making it easier to get liquid where it needs to go)
Place lube on the tip of the device to prevent local trauma to the area
Insert the device into the rectum but not too far (otherwise water goes too far in and you pull down unformed stool into the very area you want to cleanse)
Hold a Coke can-volume of water for about a minute
Expel into the toilet
Myth-busting
“The harder and faster I douche, the better”
Douching at high volumes/speeds (e.g. with shower nozzles) can can physically damage the rectum
Water can travel too far and risk pulling extra feces into the rectum
“I can douche as often as I’d like”
Aim to douche no more than 1x/day and 3x/week
When we say once a day, we mean the entire process of clearing the rectum, knowing that you may need more than one rinse per sitting, so to speak
Some experts have pointed out that douching runs the risk of stripping the colon of its mucosal layer – which plays an important protective role
“Douching with ~fancy~ commercial solutions is better than douching with plain water”
Douching with water - tap water - is preferable over other solutions (such as those found in brand-name enemas)
No need to look for “pH balanced” solutions – the anus is a neutral pH with the rest of the body
Moreover, some of these solutions are designed to irritate the colon/rectum to help you poop, which – while useful for constipation – should be avoided if you plan on inserting something else into your rectum shortly thereafter
“Using warmer water helps cleanse more effectively”
Remember: the tips of our fingers can handle water temperatures a lot higher than than what our insides can
Lukewarm water is the way to go (since cold water, while safe, is not terribly pleasant)
“Douching after sex will help me avoid sexually transmitted infections”
In fact, the opposite may be true, as further local mucosal injury and introduction of pathogens may increase the risk of injury and/or acquiring an infection.
Overall, douching after sex does not decrease the risk of getting a sexually transmitted ifnection and has no proven health benefit.
Douching and sexually transmitted infections
There’s very little scientific literature on this subject. However, the few studies we’ve found suggest that those who douche > 1x per week may have an increased association with getting an STI, such as chlamydia, gonorrhea, or HIV
The reasoning behind this: in those who douche, the outer protective layer of cells in the rectum can sometimes be removed. This means that bugs that cause STIs have increased access to their port of entry, so to speak.
For people who have sex without condoms, remember that part of being a responsible sex partner is getting screened for STIs in the sites you use for sex (including your butt and throat)
Is there anyone who should think carefully about douching?
Patients with high-inflammatory states affecting their rectum:
Particularly underlying colitis, active rectal or anal infections, active HPV.
In these cases, douching may exacerbate the underlying condition by further irritating the rectum.
Patients whose immune systems aren’t running at 100% (such as those with HIV and low CD4 counts):
These folks can be susceptible to a greater number of infections.
Important to make sure filtered or bottled water is being used
Patients with chronic kidney disease:
Folks with chronic kidney disease have a hard time clearing phosphate from their systems.
Here, the pro-tip is to avoid using phosphate solutions (such as those found in Fleet enemas) since this introduces extra phosphate to your retum which can then be absorbed into your body.
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