Gynecological Health in Women with Intellectual and Developmental Disabilities

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Introduction

This summary presents a detailed discussion on gynecological care for adults with intellectual and developmental disabilities (ID), emphasizing the unique challenges, considerations, and essential aspects of providing comprehensive care to this population. The speaker, Dr. Harris, outlines learning objectives that include describing the intersectionality of gynecologic health and common ID conditions, addressing sexual activity and the elevated rates of abuse among women with ID, and providing practical tools for incorporating routine gynecologic review into healthcare visits.

Barriers to Accessing Gynecological Care

Dr. Harris begins by highlighting the significant barriers that individuals with ID and their families face when trying to access gynecological care. These barriers are multifaceted and include the busy schedules of patients and caregivers, often overwhelmed by numerous other specialist appointments and more pressing medical concerns. There can also be a perceived lack of necessity for gynecological appointments, especially if the patient is not thought to be sexually active, leading to this area being a lower priority for caregivers. Furthermore, both patients and caregivers may harbor fears about unnecessary or uncomfortable examinations and discussions, with patients potentially experiencing embarrassment or having had negative past experiences with gynecologists. The gynecological office itself might not be adequately equipped to accommodate patients with physical disabilities, and the providers or office staff may lack the necessary knowledge and experience in caring for individuals with ID, potentially leading to discomfort and even shame. Dr. Harris underscores that due to these numerous barriers, primary care providers often become the first point of contact for identifying the gynecological needs of these patients.

Essential Components of Routine Gynecological Care

Given the challenges in accessing specialized gynecological care, Dr. Harris emphasizes the crucial role of routine gynecological review by primary care providers. She outlines several key areas that should be addressed during these reviews, tailored to the individual patient's needs and abilities.

• Review of Anatomy and the Menstrual Cycle: Dr. Harris stresses the importance of basic education about female anatomy and the menstrual cycle for both patients and their families. This fundamental knowledge is often lacking, even in the general population, and providing it can be empowering and help in understanding bodily changes. Visual aids, such as a menstrual cycle graph, can be beneficial.
• Discussion of the Individual Menstrual Cycle: Understanding the patient's specific menstrual cycle, including frequency, duration, and any associated symptoms, is essential. This discussion leads to the consideration of needs for menstrual suppression or contraception based on factors such as heavy or painful cycles, difficulties with hygiene, caregiver burden, potential behavioral distress related to menstruation, and the risk of catamenial seizures.
• Screening for Pelvic Organ Prolapse: While relevant for all women, certain populations of women with ID may be at higher risk for pelvic organ prolapse, warranting consideration for screening.
• Open Discussion about Sex, Sexual Practices, and Concerns: Addressing sexual activity and any related concerns is a natural and necessary part of gynecological care for adults, including those with ID. Dr. Harris emphasizes the importance of asking direct questions in a normalized and non-judgmental manner, acknowledging that concerns such as bowel and bladder incontinence and positioning difficulties are common in the general population as well. Topics such as sexual response, orgasm, use of lubricants, and preconception planning may also be relevant.
• Abuse Screening: Due to the significantly elevated rates of sexual abuse and assault in the ID population, routine and sensitive abuse screening for both patients and caregivers is critical. Questions should be tailored to the patient's level of understanding, and direct inquiries about unwanted touch in private areas are recommended. Caregivers should also be asked about any specific concerns they may have.
• STD Testing as Needed: Sexually active individuals should be screened for sexually transmitted diseases according to standard guidelines.

Considerations for Pelvic Exams

Dr. Harris dedicates attention to the challenges associated with performing pelvic exams in individuals with ID. Key difficulties include patient fear and anxiety, the potential inability to provide informed consent, physical restrictions such as contractures, and anatomic differences or distortions due to prior surgeries or other conditions like constipation. She stresses that obtaining a thorough history and understanding the patient's needs are often more informative than the physical exam itself. When a pelvic exam is necessary, alternative positioning beyond the traditional dorsal lithotomy may be required to accommodate physical limitations and improve patient comfort and cooperation. Dr. Harris mentions a valuable resource, a 1982 Planned Parenthood booklet titled "Table Manners: A guide to pelvic exams for disabled women and healthcare providers," which offers practical guidance on alternative positioning techniques. Furthermore, she raises the important point about the limited evidence supporting routine pelvic exams in asymptomatic patients, a consideration that is relevant for all women, including those with ID.

Medical Management: Menstrual Suppression

Dr. Harris provides a comprehensive overview of medical options for menstrual suppression, a common need in the ID population due to various factors related to hygiene, caregiver burden, behavioral issues, and medical conditions like catamenial seizures. She focuses on hormonal therapies, categorizing them into estrogen and progesterone-containing methods and progesterone-only methods.

• Estrogen and Progesterone-Containing Methods: These include pills, patches, and vaginal rings. While effective for achieving regular and predictable periods and offering the option of a withdrawal bleed, Dr. Harris notes several contraindications to estrogen use, particularly relevant in this population with multiple medical comorbidities. These contraindications include hypertension, migraines with aura, a history of blood clots, and potential interactions with certain anti-epileptic medications. There is also a theoretical concern about increased risk of deep vein thrombosis (DVT) and pulmonary embolism (PE) in non-ambulatory individuals using estrogen, although this is not listed as a direct contraindication in standard medical eligibility criteria. Cautions are advised when using these methods in patients with seizures due to potential lowering of the seizure threshold.
• Progesterone-Only Methods: Dr. Harris expresses a preference for progesterone-only methods due to the few medical contraindications. These include progesterone-only pills (with Northindrone being a favored option), injectable depot medroxyprogesterone acetate (Depo-Provera), the etonogestrel arm implant (Nexplanon), and higher-dose levonorgestrel-releasing intrauterine devices (IUDs) such as Liletta and Mirena. The most common side effect of all progesterone-only methods is irregular and unpredictable bleeding, which can range from no bleeding to frequent spotting or even full bleeding. While not typically dangerous unless excessively heavy, this unpredictable bleeding can be intolerable for some individuals. Dr. Harris notes that anecdotally, the injection tends to have the least breakthrough bleeding, followed by the higher-dose IUD, pills, and then the arm implant. The injectable form (Depo-Provera) is associated with other potential side effects such as acne, weight gain, and concerns about long-term bone density loss. It is, however, often considered the most consistently effective method for managing catamenial seizures.

Management of Breakthrough Bleeding on Progesterone

Dr. Harris addresses the common issue of breakthrough bleeding in individuals using progesterone-only methods. She emphasizes that management should be individualized based on the amount and frequency of bleeding. Options can include increasing the dose of oral progesterone (such as norethindrone), adding a short course of oral progesterone to another progesterone-only method, or, in some cases with pills, temporarily stopping and restarting to reset the uterine lining.

Sexual Activity and Abuse Screening

Dr. Harris underscores the importance of addressing sexual activity and concerns directly, normalizing the experiences of individuals with ID. Many of the sexual health concerns reported (e.g., bowel and bladder incontinence, positioning difficulties) are also prevalent in the general population. Open discussions about sexual response, orgasm, the use of lubricants, and preconception planning are vital when the individual is sexually active or considering becoming so.

Given the alarmingly high rates of sexual abuse and assault in the ID population, coupled with underreporting, Dr. Harris stresses the necessity of routine abuse screening for both patients and their caregivers. While formal validated screening tools specifically for this population are limited, she recommends asking simple, direct questions tailored to the individual's comprehension, such as "Has anyone ever touched you in your private area?" while ensuring they understand what "private areas" mean. Inquiring with caregivers about any specific concerns is also important.

Case Study: Catamenial Epilepsy and Menstrual Suppression

Dr. Harris presents a case study of a non-verbal woman with severe ID, seizures, constipation, and a history of a hysterectomy at age 13. Despite the hysterectomy, the patient continued to experience monthly exacerbations of seizures, suggesting a hormonal trigger (catamenial epilepsy). Treatment with injectable progesterone resulted in a significant reduction in seizure frequency and improved the patient's alertness and ability to eat and drink during those times, highlighting the effectiveness of hormonal management even in the absence of menstruation. The case also illustrates the challenges in communication, the burden on caregivers, and the complexities of managing chronic constipation in this population, eventually leading to the need for a colostomy.

Other Gynecological Considerations

The discussion also touches upon the increasing use of vaginal inserts for "freshness" and the associated rise in vaginal infections, emphasizing the need to educate patients about maintaining the natural vaginal flora and avoiding douches and unnecessary products. Addressing gynecological concerns in non-verbal individuals with autism is acknowledged as particularly challenging, often requiring careful observation of behaviors to discern potential underlying issues such as itching or discomfort.

Finally, the topic of hysterectomy for menstrual control in women with ID is addressed. While it may be considered a solution for managing menstruation, Dr. Harris emphasizes that it is a major surgical procedure with potential complications and should generally be reserved as a last resort after exploring medical management options. Ethical considerations surrounding permanent sterilization in individuals who cannot fully consent are also crucial. Dr. Harris describes her approach to discussing hysterectomy, which involves understanding the reasons behind the request, explaining the risks and benefits of surgery versus medical management, and highlighting the potential challenges in post-operative care in this population. She refers to a helpful resource from the American Academy of Pediatrics that provides guidance for these complex discussions with families. The discussion briefly mentions similar ethical considerations surrounding vasectomies for men with ID.

Conclusion

The presentation provides a comprehensive overview of gynecological healthcare for women with ID, emphasizing the importance of addressing the unique barriers to care, incorporating routine gynecological review into primary care settings, understanding the nuances of pelvic exams and menstrual suppression options, and sensitively addressing issues of sexual activity and abuse. The case study effectively illustrates the impact of hormonal management on a seemingly unrelated condition like catamenial epilepsy, even after a hysterectomy. The discussion underscores the need for individualized, patient-centered care, involving families and caregivers, and prioritizing less invasive medical options before considering surgical interventions like hysterectomy.

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