When Can Menstrual Suppression Start in Patients with a Disability?

Patient Presentation
A 12-year-old female came to clinic with her mother for her health maintenance visit. She had a seizure disorder, intellectual disability and was non-verbal, but would communicate sometimes through a picture board. She also had limited mobility that primarily allowed her to be up for short time periods at school or home. Her mother said she was doing well at school and in her therapies. She had recently seen her developmental disabilities specialist and orthopaedic surgeon and her ankle-foot orthoses were being updated as she had grown. Her mother said that she had not noticed any pubertal changes but wanted to know what she could expect when she had menarche.

The pertinent physical exam showed an interactive but non-verbal child in her wheelchair. She had microcephaly and some mid-line facial anomalies. Heart, lungs and abdomen were normal. She had increased tone. Tanner stage was 1 for breast and pubic hair.

The diagnosis of a healthy child with developmental disabilities was made.
The pediatrician counseled the mother that she was still pre-pubertal and in the future the family could consider menstrual suppression if they wanted to after she had achieved menarche. “Puberty comes at different times for all girls. All girls should have at least 1 menses so we know that the genital and hormone systems are working correctly. Then there are options for stopping or making her periods more predictable if you want to do that. Usually we use some form of hormones such as birth control pills but there are other choices too. Not only are there the hygiene issues to think about, but for some girls who can’t communicate as well, there can be mood changes or irritability. For girls with seizures, menarche can also change the number of seizures. The hormones themselves could interfere with her seizure medicine so we would need to think about that too if we started her on some medicine for her periods,” the pediatrician offered. The mother was happy with the information and as her daughter had an appointment with her neurologist soon, said she was going to do some more research herself and also discuss the issue with the neurologist.

Menstrual suppression using hormonal therapy is commonly used for a variety of reasons:

  • Patient preference
  • Contraception
  • Heavy or painful menses
  • Treatment of concomitant problems such as menstrual migraine, mood issues, nausea
  • Specific patient populations
    • Disabilities
    • Oncology
    • Transgender and gender nonbinary

Methods of suppression include:

  • Estrogen and progesterone
    • Combined oral contraceptives (COC) – very good menstrual suppression and generally used as first line treatment for many patients
      • Traditional dosing with active medication for 21-24 days and then 4-7 day placebo break.
      • Extended cycles – varies with continuous medication for an extended period of time and then planned placebo break, or until breakthrough bleeding occurs and then placebo break of ~4 days.
      • Amenorrhea rate: ~80% at 1 year
      • Potential problems: increased risk of venous thromboembolism in immobile patients, anti-epileptic medication interactions, breakthrough bleeding
    • Vaginal ring – can be placed for 3 weeks and then replaced. When breakthrough bleeding occurs, then ~4 day break is given.
    • Transdermal patch – placed weekly, when breakthrough bleeding occurs, then ~4 day break is given.
  • Progesterone only
    • DMPA (depo-medroxyprogesterone acetate) – given every 12-13 weeks, no specific break is given
      • Amenorrhea rate: ~46% at 1 year
      • Potential problems: weight gain, irregular breathrough bleedings, bone mineral density decreased but can improve after being off the medication.
    • Intrauterine device with levonorgestrel – menstrual suppression is achieved for many, for others they often have oligomenorrhea. Menstrual suppression better with 52 mg IUD that is approved for placement for 5 years.
      • Amenorrhea rate: ~50% at 1 year for the 52 mg IUD, 60% at 5 years of continuous use.
      • Potential problems: may require sedation for placement for some patients
    • Progestin oral contraceptive – can be used but is not as good as COC for menstrual suppression. Side effects may not be tolerable for some patients. Breakthrough bleeding can occur.
  • Estrogen only
    • Nexplenon – estrogen implant
      • Amenorrhea rate: 22%
      • Potential problems: irregular bleeding, may need sedation for placement or removal
  • GnRH-agonist – different formulations but given every 12 weeks. For short term use only.
    • Amenorrhea rate: 100%
    • Potential problems: short term use only as has menopausal symptoms, decreased bone density
  • Surgical
    • Endometrial ablation or hysterectomy have serious long-term risks and therefore are not generally considered for menstrual suppression in the pediatric population. However, for older women these may be appropriate options. Legal and ethical considerations must be addressed as well.

Discussions about specific options and menstrual suppression management may require assistance from appropriate specialists in addition to primary care providers.

Learning Point
Below are menstrual suppression considerations in special populations:

  • Disability patients
    • Common reasons
      • Hygiene
      • Mobility constraints
      • Mood/behavioral issues
      • Contraception
      • Menstrual predictability
      • Safety concerns
      • Seizure management
    • Population has a wide variety of physical and developmental problems and abilities and therefore best choice varies.
      For patients with intellectual and communication disabilities, managing hygiene and mood/behavioral issues are very common. Which option depends on the patient and family wishes. Considerations also include ability to take pills, place rings or patches frequently, or receive injection every few weeks.
      Risks of sedation for placement of some devices and anti-epileptic medication interactions are also important in this patient population.
    • Some families raise the issue of menstrual suppression before menarche. “Although counseling can be conducted, to ensure the absence of an obstructive congenital anomaly, demonstrate a functional hypothalamic-pituitary-gonadal axis and endogenous estrogen production, no method should be initiated before the onset of menses.” [bolding by author]
  • Oncology patients
    • Common reasons
      • Thrombocytopenia from treatment
      • Pretreatment therapy for bone marrow or stem cell transplant
    • Usually this is for short time periods
    • GnRH agonists are preferred method by many oncologists
    • Considerations also include that potential foreign bodies may increase infection or other risks in immunocompromised individuals
  • Transgender patients
    • Common reasons
      • Gender dysphoria
      • Contraception
      • Menstrual predictability
      • Safety issues
    • Usually estrogen containing options are avoided as they can increase feelings of gender dysphoria
    • Using testosterone is also an option in this population for menstrual suppression

Questions for Further Discussion
1. What evaluation can be considered for heavy menstrual bleeding? A review can be found here
2. What are causes of secondary amenorrhea? A review can be found here
3. What are the common sexually transmitted infections in your location and how are they treated?
4. What is the definition of gender dysphoria? A review can be found here

Related Cases

To Learn More
To view pediatric review articles on this topic from the past year check PubMed.

Evidence-based medicine information on this topic can be found at SearchingPediatrics.com and the Cochrane Database of Systematic Reviews.

Information prescriptions for patients can be found at MedlinePlus for these topics: Menstruation and Birth Control.

To view current news articles on this topic check Google News.

To view images related to this topic check Google Images.

To view videos related to this topic check YouTube Videos.

Chuah I, McRae A, Matthews K, Maguire AM, Steinbeck K. Menstrual management in developmentally delayed adolescent females. Australian and New Zealand Journal of Obstetrics and Gynaecology. 2017;57(3):346-350. doi:10.1111/ajo.12595

Pradhan S, Gomez-Lobo V. Hormonal Contraceptives, Intrauterine Devices, Gonadotropin-releasing Hormone Analogues and Testosterone: Menstrual Suppression in Special Adolescent Populations. Journal of Pediatric and Adolescent Gynecology. 2019;32(5):S23-S29. doi:10.1016/j.jpag.2019.04.007

Humphrey KN, Horn PS, Olshavsky L, Reebals L, Standridge SM. Features of Menstruation and Menstruation Management in Individuals with Rett Syndrome. Journal of Pediatric and Adolescent Gynecology. 2021;34(2):144-153. doi:10.1016/j.jpag.2020.11.002

Donna M. D’Alessandro, MD
Professor of Pediatrics, University of Iowa