Sexual desire is a largely misunderstood aspect of our sexual health. It’s stigmatized and pathologized on both ends: whether you have no appetite or an extremely high desire to have sex, it’s seen as problematic. All of that can make it feel really overwhelming to reach out for help when something might actually be out alignment with your libido. Hypoactive sexual desire disorder (HSDD) is a persistent or recurring lack of sexual fantasies and appetite for sex which is causing the patient distress and can’t be accounted for as a symptom of another illness.
It can be difficult to diagnose HSDD as there is no baseline “norm” for sexual desire across the spectrum — you have to feel out where your level of desire feels nourishing. Everyone is different when it comes to how they experience sexual desire and it’s perfectly normal for your libido to ebb and flow throughout your life. Juliet Widoff, an OBGYN at Callen-Lorde, says screenings for HSDD should happen regularly, as “it is a disorder that can cause a significant amount of personal and interpersonal distress and, because there is a great deal of shame and stigma surrounding it, patients may not be forthcoming regarding their symptoms.”
Understanding Sexual Desire
The first thing to unlearn when it comes to sexual desire is that it’s not a drive. That’s right, there’s no such thing as a sex drive. A drive is something you need to survive, like seeking warmth during a winter storm or eating food and drinking water. You won’t die if you don’t have sex. Sexual desire was thought to be a drive for a long time because scientists only understood spontaneous lust, which is when a stray thought of sex will initiate the craving to have sex. However, many people rarely, if ever, experience that form of desire.
More often it’s responsive or context-driven desire that initiates sex — which means you want to have sex after your partner touches or kisses you or says something sexy or you see an arousing visual. That delineation is important because many people who don’t experience spontaneous desire feel like something is wrong with them when in fact their desire responses are perfect as is.
In a similar vein, asexuality is largely pathologized as being a medical issue when it’s not. The important difference between an HSDD diagnosis and identifying as asexual is that people with HSDD are in distress about their sexual functioning. “This highlights a difficulty of diagnoses,” relationship therapist, educator, and author, Shadeen Francis says. “Despite knowing that sexuality exists with so much diversity, the limited way we talk about sex and lust in society can create the distress that earns someone a diagnosis. Many sexual disorders and dysfunctions can be prevented or addressed with comprehensive sex education.”
Asexuality is a valid and real sexual identity that doesn’t need to be pathologized in a medical setting. Our society is quick to shame and misunderstand people on the ace spectrum. If your sexual functioning isn’t causing you any pain, stress, or anxiety — you likely don’t have HSDD, and it’s more likely you’re asexual.
Who Does HSDD Impact?
While research and resources are primarily aimed towards cisgender women, HSDD can impact people of all genders. “Their [people with penises] experiences are often categorized as low testosterone, trauma responses, or erectile dysfunction even if they ultimately meet all of the same criteria,” Francis explains to Allure. “This, in my opinion, has a lot to do with gender stereotypes of people with penises as having high arousal and desire at baseline, and that if they don’t there is something situational and physiological in the way. We categorize people with vulvas as being less sexual, and see low arousal or desire in them as lasting and pathological.”
All of these gender stereotypes and stigmas impact the level of care provided in a medical setting and shift how symptoms are perceived and diagnoses are given. The only person who knows what level of sexual desire feels good in your body is you. Arousal is not dependent on your genitals or gender identity.
The Obvious and Not-So-Obvious Symptoms
While the main symptoms are linked to lacking the ability to experience arousal, difficulty having an orgasm, relationship stress, or pain during sex — there are many insidious symptoms that go unchecked.
“Patients may not present with the obvious and may instead present with fatigue, depression, anxiety, sleep disturbance, vaginal symptoms, or relationship problems,” Widoff says. When your sexual desire is out of alignment, the impact can reverberate to every aspect of your life. For this reason, it may not be obvious you have HSDD at first because other symptoms (like anxiety) may come to the forefront.
Many patients first come into a medical setting because of libido differences with their partner(s) — this distress can impact your sense of sexual self and agency. When your desire is lower than usual, there can be a feeling of uncertainty over your sexual future, especially if you’re in a relationship where having sex has been a norm. If you are experiencing a decrease in desire, it’s important to note that you should never feel pressured or coerced into having sex with your partner. Don’t allow anyone to use your HSDD as an excuse to guilt you into having sex when you don’t want to.
“We are socialized to believe that sexuality is this specific experience: you find a person or people that you are attracted to, and for however long you are with them you have passionate and frequent sex for the rest of your lives,” Francis explains. “Just like any other relationship, our relationship to our sexual selves doesn’t run on autopilot, it takes things like flexibility, negotiation, compassion, and understanding.”
As an educator, one of the most frequent questions I get from people is “XYZ is happening in my sex life, am I broken?” The normalized silence and shame around sex education paired with our hypersexual society leaves people feeling like anything outside of the spontaneous and passionate sex (with little to no communication) is abnormal. Check in with yourself about what your personal “norm” for sexual desire is. Spend some time getting to know your body, what kind of touch you like, how you want to have sex, and if you need a specific context to feel safe having sex. Being able to communicate desires with your partner or partners will allow you to reclaim the pleasure you deserve.
The Causes of HSDD
There is no clear-cut answer to this question — the causes of HSDD can get quite murky and personal as the brain is the control center for sexual desire. The same way HSDD can amplify mental illness like depression or anxiety, it can also be caused by mental illness.
“When you don’t feel well, emotionally, physically, spiritually, etc., it can impact your sexual desire,” says Francis. “Mental health concerns are often treated with psychotropic medications, which also change the hormones in the body.” However, Francis notes that while some SSRI medications can decrease interest in sex, people are often able to maintain desire and just might not feel motivated to initiate sex.
“There are certain neurological diseases with a high incidence of HSDD, like multiple sclerosis (MS) or Parkinson’s,” explains Widoff. ”There are definitely hormonal factors that may play a significant role, any chronic illness may play a role, stress and fatigue certainly are major contributors and interpersonal dynamics are frequent cofactors.” The context of who you’re having sex with, where you’re having sex, and what kind of sex is being had can all play a role in your level of desire. Meaning if you are having relationship struggles with your partner or are in a toxic relationship — that could be causing HSDD.
If you’ve been through something traumatic recently (or are processing a past trauma) that can also impact your level of sexual desire. Francis notes that she screens all her clients for sexual pain or trauma. “Pain impacts our pleasure and creates distress,” she says. HSDD is often situational and will pass with time — but it can be chronic, meaning under similar life circumstances you could experience HSDD symptoms again in the future.
Emotional and Physical Healing From HSDD
As you are probably noticing by now, this disorder is incredibly personal so your healing regimen will likely look different from other people with HSDD. There are absolutely things that can be done to help increase desire. While not everyone who has HSDD also experiences pain during sex, Widoff recommends pelvic floor PT for those who do. If your HSDD is onset by hormonal shifts and changes, Widoff says “topical estrogen for post-menopausal cis women with atrophic changes and trans men with atrophic changes, a smidge of testosterone for cis and trans women with low libido can also be very helpful.” Both Widoff and Francis make note of different drugs on the market for women with a lowered libido but note the lack of evidence in their efficacy.
Negotiating boundaries with partners and increasing solo pleasure practices (yes, masturbation as medicine) can also be helpful tools for people with HSDD. Communication about sex is often labeled as awkward or uncomfortable or unsexy when in fact it can help decrease a lot of sexual disorders. Talk with your partner(s) about how you like to be touched, what your sexual boundaries are, and what kind of sex you like to have. It will not only make for more consensual sex, but more pleasurable sex, as well.
As a therapist, Francis says that what she’s found most helpful in treating clients with HSDD is sex education. “Allowing people to stop measuring their sexual desire in comparison to others is transformative — it helps get rid of the shame,” she notes. Guiding people in building their own toolbox of skills and knowledge around pleasure can help familiarize people with their own arousal and pleasure center. These tactics tend to allow more spaciousness to explore partnered sex without pressure to perform in a certain way.
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