By J. Ron Eaker, M.D.
I have resisted writing on this topic for a while largely due to my ignorance regarding a number of the conditions I will address, and because I wasn’t sure of the need. I was wrong. The special needs a gynecology patient shares many of the same problems and issues as the general population yet they deserve a necessary sensitivity to their unique challenges.
The first hurdle exists in the mind of the provider. Just because a woman has autism spectrum disorder or is wheelchair bound doesn’t mean she doesn’t have the same sexual issues, risks, or challenges as everyone else. I admit I have, in the past, incorrectly and embarrassingly assumed that a special needs patient was not concerned with certain aspects of their care because of their disability. Luckily over the years I have had a number of patients that have shown me that women have the same desire to maximize their physical and psychological well being regardless of their current challenges. We, as medical practitioners, have to abolish our preconceived notions and prejudices and simply treat folks as unique individuals, albeit with some additional needs.
A 1989 study found that the majority of women with special needs wanted information on sexuality and contraception, but most didn’t bring it up during their gyn visit. Worse, only about 20% of Ob-Gyns raised the issue themselves. In addition to breaching the topic of sexuality, doctors need to also be trained on the physiological effect of certain birth control methods on women with various disabilities. For example, a woman who is on a myriad of psychotropic medications may have a weight issue due to side effects from medications. Adding a contraception that enhances this weight gain can have a devastating effect on health and well-being. A woman who is wheelchair bound may be at greater risk of blood clot formation and shouldn’t use a birth control method that would heighten that risk.
Some issues may require a deviation from a normal schedule. For example, women with certain autism spectrum disorders may benefit from a “trial run appointment” where they visit the office in a non-threatening scenario (i.e. no exam) and simply get comfortable with the physical environment. It may help to preview what generally happens in an exam with illustrations and models and allow the patient to ask any questions they may have. Many medical experts state that people with autism handle experiences, even unpleasant experiences, a lot easier when they know in advance what the experience will be like.
Adolescents and women with disabilities with the following underlying diagnoses often require special counseling and attention to their gynecological well being:
• Cerebral Palsy
• Autism Spectrum Disorders
• Trisomy 21
• Genetic Disorders – Rett Syndrome, Cri-Du-Chat Syndrome, Prader-Willi Syndrome, and many more
• Cognitive Impairment
• Traumatic Brain Injury
• Seizure Disorders
Each of these problems often requires a team approach with many health care providers contributing to the patient’s overall well-being. It is critical to have a “medical champion,” often a primary care doctor or nurse practitioner, who can coordinate care and make sure the various specialties are talking to each other.
Common issues that have to be addressed in this population are:
• Difficulty with menstrual hygiene
• Perimenstrual behavioral problems
• Heavy or painful menses
• Precocious or delayed puberty
• Sexual education and teaching appropriate boundaries
• Ovarian cysts
• Vulvar skin disorders
• Breast masses
The first thing that should be apparent is that these same maladies are experienced in the general population. When there are overlying disabilities, these issues need special attention. For example, issues of menstrual hygiene can be challenging for both the patient and the caregiver. There are a number of reversible and non reversible options for controlling periods, and these are the types of discussions that need to be had. Providing appropriate sexual counseling may involve other health care providers specially trained in working with special needs women, and unfortunately these resources may be limited, especially in rural or underserved areas.
Another example where a person’s disability may effect gyn function is in young girls who suffer traumatic brain injury. Often they may experience delayed menarche or even precocious puberty. In fact, women with previously normal menstruation may experience transient menstrual disorders after becoming disabled. All these factors must be understood and assessed to provide the best care.
According to the National Institute on Disability and Rehabilitation Research, approximately 21% of women in the United States have some type of disabling condition. Obviously there are huge variations as to the nature and degree of the underlying conditions; however, it is incumbent on the part of the patient, the care giver, and the physician to be aware of and address specific needs.
This article appears in the June/July 2019 issue of Augusta Family Magazine.
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