On the case... Menstrual suppression in an adolescent with intellectual disability By Casey S. Hopkins, PhD, RN, WHNP-BC bby is a 12-year-old girl to be right around the corner. Liz individualized education plan and is with an autism spectrum expressed her concern about Abby in a special education class. She lives Adisorder, attention-deficit/ being able to handle her periods on at home with her mother, father, and hyperactivity disorder (ADHD), and her own. The pediatrician referred older sister. intellectual disability (ID). She pres- them to the nurse practitioner at the Liz expresses her concerns to the ents to the pediatric and adolescent PAG office to discuss preparation for nurse practitioner (NP) regarding gynecology (PAG) office with her and management of menstruation. menstruation and how Abby will mother, Liz. Abby has not yet started Abby is currently taking methyl- cope with it. She is concerned that having periods. Liz noticed Abby’s phenidate 36 mg daily for treatment Abby will not understand what is breasts began to develop about of ADHD. She is communicative happening when menstrual bleeding a year and a half ago, and Abby verbally. Liz reports Abby functions occurs. She worries that Abby will has recently had a growth spurt in cognitively at about the level of experience pain with menses and height. The pediatrician mentioned a 7-year-old child. Abby attends may not be able to communicate at Abby’s well-child appointment school daily and enjoys her friends effectively regarding the pain. Liz last month that menarche was likely and teachers at school. She has an is also uncertain that Abby will be able to manage using a pad. Abby is continent of urine and stool. She is independent with toileting, but sometimes she does not thoroughly wipe after a bowel movement and needs to be reminded or assisted. Furthermore, Liz expresses that she is concerned about how all of this will increase caregiver burden for the family and Abby’s teachers at school. What should the NP know about menstruation in girls with intellectual disability? Although there may be some vari- ation in the timing of maturation NPWOMENSHEALTHCARE.COM February 2021 Women’s Healthcare 41 depending on the type of disability, ant for the NP to use formal lan- may reduce menstrual flow by 30% for the most part, girls with ID fol- guage for body parts and functions to 40% and may help with dysmenor- low the same pattern of pubertal (eg, period, vulva, vagina) to provide rhea.3 They are advised to follow up maturation as girls without disabili- clarity and to help Abby learn words with the NP if they decide they would ties.1 Challenges with menstruation to use as she continues to learn like to explore options for menstrual may arise when the girl’s level of about puberty and sexuality. suppression following Abby’s initial understanding limits her ability to The NP explains the nature of experience with menses. conceptually understand menstru- the menstrual cycle and tells Liz ation, develop new skills necessary and Abby what to expect with What is menstrual to manage it, and/or communicate menarche. In the United States, the suppression? her feelings or needs. The impact average age of menarche is between The goal of menstrual suppression of menstruation on the daily life of ages 12 and 13 years. It typically is to lessen the total number of the girl and her caregivers is highly occurs 1½ to 3 years after breast menstrual flow days and to reduce dependent on her level of disabil- budding, when breasts and pubic the amount of flow.3 Initiation of ity. Generally, girls who are able to hair are near Tanner stage 4, and methods to suppress menstruation manage toilet hygiene can learn to after growing 3 or more inches over before menarche is not recom- manage their menstrual hygiene the course of about 6 to 8 months.3 mended.3 Allowing menarche to independently. Therefore, assessing Irregular periods are very common occur confirms normal hormonal continence and toileting needs is within the first 2 to 3 years after and anatomic function and does not an important point of assessment. menarche due to the immature limit the child’s height potential.3 Many girls with disabilities are capa- hypothalamic-pituitary-ovarian Nurse practitioners should set realis- ble of and do manage menses very axis. The NP provides a simple ex- tic expectations and explain to girls well. Anticipatory guidance for men- planation of the menstrual cycle to and their caregivers that even with struation is imperative. Girls with dis- Abby. The NP also encourages Liz the use of hormonal methods for abilities may need longer to practice to continue providing education at menstrual suppression, it is unlikely and prepare for the skills necessary home regarding the normality of that complete amenorrhea will be to manage menstruation.2 menstruation in girls going through achieved. Thus, some bleeding is to puberty (See “Teaching About be expected.1 How should the NP Periods-Story” in Healthy Bod- In a recent systematic review of proceed with the office ies Appendix-GirlsA). In an effort the literature concerning menstrual visit? to normalize menses and help to suppression in girls with disabilities, Although a general physical exam is prepare Abby, it is suggested that the authors found that healthcare warranted, a pelvic exam is almost she observe her mother or sister providers are most commonly using never indicated for an adolescent change a pad, dispose of a used combined oral contraceptive pills who is not sexually active and would pad, and place a new pad so she (28-day, extended-cycle, or contin- only be indicated in the case of a can know what to expect, especially uous dosing) to suppress menses.4 vulvovaginal complaint such as a regarding the sight of menstrual Depot-medroxyprogesterone vaginal discharge or if there was sus- blood (See “How to Use My acetate (DMPA) and levonorge- picion of sexual abuse. Depending Pad” in Healthy Bodies-GirlsA). strel-releasing intrauterine system on the adolescent and her level of Abby should have opportunities to (LNG-IUS) (most often placed under understanding, the pelvic exam may practice opening and placing a pad sedation or anesthesia) are also be performed under anesthesia.3 in her underwear and should also used. Both of these methods may In Abby’s case, there is no reason to practice wearing the pad around so initially cause irregular bleeding, but perform a pelvic exam during her she can become familiar with what it amenorrhea is usually achieved after office visit. At this point, the focus of feels like to wear one. several months. Other options such the visit should be on anticipatory Abby and her mother are reas- as the progestin-only birth control guidance for Abby and her mother. sured and instructed to keep a bleed- pill, transvaginal ring, and transder- The NP should engage Abby by ing calendar when menses begins. mal patch are used less commonly talking to her directly about puberty The NP also explains that scheduled for menstrual suppression in girls and menstruation in a clear and nonsteroidal anti-inflammatory with ID. Unscheduled bleeding is matter-of-fact way. It is also import- drugs (NSAIDs) dosed appropriately common with progestin-only birth 42 February 2021 Women’s Healthcare NPWOMENSHEALTHCARE.COM Nurse practitioners should and failed.3 Laws regarding hyster- partner ectomy, sterilization, and consent in minors vary from state to state and with girls with ID and their caregivers must be considered before proceed- ing with surgery.3 to support open communication The follow-up visit and optimal gynecologic health. Clear Abby and Liz return to the PAG office 8 months after their first visit. Abby communication, goal setting, realistic started her period a month after her 13th birthday. She has had four expectations, and consistent follow-up periods so far. Liz reports the first period lasted about 8 days. Seven are key to promoting positive weeks went by before Abby had her second period, which lasted 7 experiences with menstruation and menstrual days. The two periods following her second period were regular, occur- suppression for girls with ID and their ring 28 days apart and lasting 5 to 7 days. Abby’s mother describes the menstrual flow as moderately heavy. caregivers. Abby needs to change a pad about every 3 to 4 hours. She has to be re- control pills especially if not taken at for contraindications or risks to use minded to change her pad and has the same time each day. Girls with of any hormonal contraceptives us- placed the pad upside down a few ID may have difficulty inserting a ing the US Medical Eligibility Criteria times, which has caused discomfort transvaginal ring or cooperating for for Contraceptive Use.5 Caution is and problems with blood staining a caregiver to do the insertion. They recommended with regard to the onto her pants. Liz has managed this may decide to remove the trans- use of any of the estrogen-contain- by accompanying Abby to the bath- dermal patch or not be attentive ing contraceptive methods if the room to ensure the pad is placed to inadvertent separation from the patient also has physical disabilities appropriately. skin.3,4 that significantly limit mobility be- In addition to difficulty with The etonogestrel subdermal cause of a possible increase in risk menstrual hygiene, Abby is expe- implant is not recommended as a for venous thromboembolism.3 riencing changes in her mood and first-line therapy for menstrual sup- Some caregivers of girls with ID behavior during the week leading pression due to the high incidence will ask about surgical options for up to her period and while she is on of irregular, prolonged bleeding and menstrual management considering her period.