Key points

Introduction

Sex and sexuality are integral parts of the everyday lives of most of the population. According to the World Health Organization’s key conceptual elements of sexual health, sexuality is a human right and should be viewed as part of a rights-based approach to sexual health. In other words, sex is an activity of daily living (ADL) and a right and should be treated as such in all aspects of a person’s care. It has been well-documented in the literature that individuals with disabilities are often viewed as asexual, or “child-like” and not interested, or able, to participate in sexual activity, which is simply not true. Individuals with physical disabilities are as sexually experienced as their nondisabled counterparts, and people with disabilities often report wanting to learn more about sexual health. Therefore, we should be providing adequate, appropriate, and disability specific sexual health education and health care.

Disparities in sexual health education

Sexual development spans the entire lifespan from infancy, childhood, adolescence, adulthood, and beyond. Arguably, one’s exposure to sexual health education, or lack thereof, is the foundation upon which an individual’s sexuality, identity, and relationships are built. It is impossible to make informed decisions about your body, health, relationships, and behaviors without access to comprehensive sexual health education. Unfortunately, individuals with disabilities or medical complexities do not have access to the same resources as their counterparts in the general population when it comes to sexual health education, despite the fact that many people with disabilities are sexually active. The most common places adolescents are learning about sexual health include school-based sexual health education programs, medical providers, parents or guardians, friends, and media. However, it seems that many of these resources do not provide adequate, appropriate, or disability-specific information. Most importantly, people with disabilities are interested in learning more about sexual health and report the need for more disability-specific sexual health education.

School-based sexual health education programs can be a great resource if they are comprehensive in nature. Unfortunately, the quality of the information taught in school-based programs varies significantly based on state laws and regulations. In addition, most school-based programs provide sexual health education as it pertains to the majority of students and often does not address disability-specific topics, adjust the delivery of the topics for those with intellectual disability, or have representation of individuals with disabilities in the material. Individuals with disabilities are less likely to receive school-based sexual health education, and their teachers are less likely to deem it beneficial or appropriate. Depending on the state, opt-in or opt-out policies may preclude individuals with disabilities from participating in sexual health classes if a guardian or teacher does not deem it pertinent or appropriate. They also may not be in the classroom during sexual health education classes depending on the specifications of their Individualized Education Plan (IEP). Finally, most people who are teaching sexual health education are not trained to do so and therefore, do not feel comfortable with the topic of sexual health, let alone adapting the curriculum for their students with disabilities.

Medical providers can also be a great source of sexual health information for their patients, but this is often not the case for individuals with disabilities. In a study published in the Journal of Pediatric Rehabilitation Medicine in 2019, primary care providers were less likely to adhere to sexual health guidelines for their patients with disabilities compared to the general population. Specifically, they were less likely to document a sexual history, less likely to document a pregnancy history, less likely to document menstrual history, and less likely to screen for human immunodeficiency virus in patients with disabilities compared to their matched counterparts. Medical providers often state that they do not feel that they have adequate training, do not have time, and do not feel comfortable discussing sexual health with people with disabilities. Patients also report issues with being perceived as asexual or infantilized, finding accurate and appropriate information, lack of accessibility of the examination room, and clinician discomfort with discussing sexual health. ^,

The physiatrist’s role in sexual health

Arguably, every medical professional should be discussing sexual health with their patients as it pertains to their specialty. Physiatrists are experts in maximizing patients’ independence in ADLs and functional mobility, with the goal of improving overall quality-of-life. As an ADL, sexual health should be a part of any holistic approach to a patient’s health and well-being. As noted earlier, many primary care providers and other subspecialists are not discussing sexual health with their patients with disabilities for a myriad of reasons, but often it is because they simply do not feel knowledgeable about or comfortable with their disability. As disability experts, physiatrists can provide a unique perspective when it comes to the sexual health of their patients and can advocate for their patients to receive the information and health care that they deserve. Therefore, physiatrists should be addressing sexual health as a routine part of each visit or inpatient rehabilitation course.

Puberty

Puberty, and the emotional and physical changes that accompany it, can be stressful for adolescents and their caregivers especially when they are not given proper anticipatory guidance. Caregivers of people with disabilities report significant anxiety surrounding puberty and menarche. ^, Due to the inaccurate infantilization of people with disabilities, the initiation of a process that signals that one’s body is ready to reproduce can be disconcerting for caregivers. This, along with concerns about hygiene, additional caregiver burden, and menstrual symptoms can add to the caregivers’ distress. On the other hand, adolescents with disabilities may be more concerned with sexuality, body image, and the social impact of menarche. A qualitative study performed by Gray and colleagues showed that there is marked variation in parental perception of the significance of puberty for their daughters with cerebral palsy. Due to the wide variety of concerns held by adolescents with disabilities and their caregivers, it is essential that an open line of communication is started early between providers, adolescents, and their caregivers surrounding puberty and menstruation. This is especially important for adolescents with intellectual disability who would benefit from early and repeated education surrounding the changes that will happen to their body.

Menarche and menses

The median age of menarche in the general population in the United States is around 12 to 13 years of age. ^, Some females with disabilities are at risk of precocious or delayed adrenarche, pubarche, or menarche. For example, individuals with Spina Bifida and hydrocephalus, Down Syndrome, and Fragile X, acquired brain injury, and neurodevelopmental disabilities tend to experience puberty precociously, whereas individuals with autism spectrum disorder, Noonan syndrome, cerebral palsy, Rhett Syndrome, or disabilities that may affect their ability to receive proper nutrition may experience delayed completion of puberty. In addition to the disability specific physiology affecting the timing of puberty, menstrual cycle regularity can be affected by commonly used medications including antiepileptic drugs, dopaminergic agents, and antipsychotics. Therefore, prior to the initiation of menarche, it is important for providers, patients, and caregivers to discuss the possible effects of their diagnoses and medications on the initiation and regularity of their menstrual cycles. It is also important to provide anticipatory guidance to patients and families regarding menstrual management and hygiene at home and in the community. Starting discussions early allows for the creation of a patient-centered management plan that promotes patient independence.

In addition to variations in timing of puberty, individuals with disabilities may have differences in symptoms associated with the timing of menses including worsening seizures, behavioral problems, increased tone, migraines or headaches, and iron-deficiency anemia. These symptoms can worsen around the time of menarche and some patients continue to have cyclical increases in symptoms around the time of their menses. Patients who experience these types of fluctuations in symptoms may benefit from menstrual manipulation or improved medical management of symptoms around menses.

Iron deficiency

As mentioned earlier, iron deficiency is a common complication of menses and is the most common micronutrient deficiency worldwide. Iron deficiency is underdiagnosed in adolescents, causes a plethora of symptoms, increases the risk of pregnancy and peripartum complications, and may cause potentially irreversible neurologic changes to the developing fetus. Symptoms of iron deficiency, including fatigue, dizziness, and headache ^, can be present without anemia and are common in adolescents with disabilities. Patients with chronic migraine have significantly lower hemoglobin and serum ferritin levels compared to controls and their symptoms improve with iron repletion. ^, In addition, many symptoms of the post-concussion syndrome and postural orthostatic tachycardia syndrome (POTS) overlap with the symptoms of iron deficiency. One of the diagnostic criteria of POTS includes ruling out other causes of sinus tachycardia such as anemia, and low iron storage has been found to be more frequent in adolescents with POTS compared to the general population. However, it is unclear whether low iron storage is a consequence, cause, or exacerbating factor in POTS. Treatment for POTS is focused on symptomatic treatment, which includes treating iron deficiency.

Due to improvements in symptom burden with treatment, all menstruating people, including those with disabilities, should be screened for iron deficiency. Unfortunately, the current threshold of ferritin concentration to assess iron status (<15 μg/L) is likely too low, with symptoms arising in many patients prior to ferritin values dropping to these levels. ^, Thus, higher thresholds have been proposed, and it is reasonable to consider treatment of any symptomatic patient with ferritin less than 75 to 100 μg/L. If identified, the underlying cause of iron deficiency should be investigated and treated. Initial treatment includes dietary and oral iron supplementation, though some patients may benefit from intravenous iron formulations due to poor oral supplementation tolerance or the need for rapid repletion. ^,

Menstrual suppression

Many individuals with disabilities and their caregivers opt to pursue menstrual suppression to help alleviate the symptoms associated with menses, improve hygiene, or increase independence. Menstrual suppression refers to the use of an intervention, often medications and devices, to decrease the frequency or intensity of menses. Menstrual suppression can be initiated after menarche, but is not recommended prior. While complete amenorrhea is often desired by patients and caregivers, it is very difficult to achieve, and expectations should be managed appropriately. The goal of menstrual suppression should always be to use the lowest-risk, reversible method while maximizing patient autonomy. While there are many options for menstrual suppression, care must be taken to choose the appropriate method that aligns with the patient and caregiver’s goals while minimizing risk factors and adverse events ( Table 1 ).

Table 1

Comparison of menstrual suppression methods

Method	Dosing Schedule	Hormones Utilized	Effect on Menstruation	Effect on Fertility (% of Females Who Experienced Unintended Pregnancy Within First y of Typical Use)	Considerations for Individuals with Disability	Considerations for Patients with Seizure Disorders
Combined oral contraceptives	Daily	Estrogen and progestin	Can use continuously or for extended cycling	9%	• Can have break through bleeding if not taken continuously • Can use chewable pills or crush pills if patient is unable to swallow pills safely	Not recommended for use when taking cytochrome p450 inducing AEDs
Progestin only oral contraceptives	Daily	Progestin	Can cause irregular bleeding		• Can have break through bleeding if not taken continuously • Can use chewable pills or crush pills if patient is unable to swallow pills safely	Not recommended for use when taking cytochrome p450 inducing AEDs
GnRH agonists	Daily to every 3 mo (formulation dependent)	Gonadotropin releasing hormone agonists	Can cause increased bleeding initially but eventually result in suppression		• Can cause decreased bone density • Can cause menopausal symptoms
Patch	Weekly	Estrogen and progestin	Can use continuously or for extended cycling	9%	• Can be difficult to place for people with poor dexterity • For patients with ID, should place the patch in an area that is difficult for the patient to reach • Can cause skin irritation	Not recommended for use when taking cytochrome p450 inducing AEDs
Vaginal ring	Monthly	Estrogen and progestin	Breakthrough bleeding	9%	• Can be difficult to place for people with poor dexterity or lower extremity tone • Very invasive to have placed by someone else	Not recommended for use when taking cytochrome p450 inducing AEDs
Implant	5 y	Progestin	Breakthrough bleeding	0.05%	Pain and discomfort of insertion
Shot (DMPA)	3 mo	Progestin	Can have breakthrough bleeding but risk decreases the longer you use this method.	6%	• Can cause weight gain • Can cause decreased bone density	May need to increase frequency of dosing to every 10 w
LNG-IUD	Up to 8 y depending on type	Progestin	Breakthrough bleeding	0.2%	• For patients with ID, may need to be placed under sedation • For patients with significant tone or contractures positioning for placement may be difficult • Patients with poor dexterity may have difficulty checking strings
Copper IUD	Up to 12 y	Copper		0.8%	• For patients with ID, may need to be placed under sedation • For patients with significant tone or contractures positioning for placement may be difficult • Patients with poor dexterity may have difficulty checking strings
NSAIDs	Every 6 h during menses	None	Does not have significant effect on bleeding	No known effect on fertility	• Does not cause amenorrhea • Need to consider renal health • Can help with pain associated with menstruation
Surgical methods (Sterilization or endometrial ablation)	Permanent	None	Amenorrhea	0.5% with sterilization	Unethical	Unethical

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