Use of the Levonorgestrel Intrauterine System to Treat Heavy Menstrual Bleeding in Adolescents and Young Adults with Inherited Bleeding Disorders and Ehlers-Danlos Syndrome

Study objective: To report on the rate of amenorrhea among adolescents and young adults with a bleeding diathesis after insertion of the 52-mg levonorgestrel intrauterine system (LNG-IUS) DESIGN: Retrospective chart review SETTING: Tertiary care, multidisciplinary Gynecology-Hematology clinic or Adolescent Gynecology clinic PARTICIPANTS: The cohort included 35 females aged 12-25 years presenting from January 2010 to January 2020 with heavy menstrual bleeding, 23 with an inherited blood disorder, and 12 with Ehlers-Danlos syndrome INTERVENTIONS: The 52-mg LNG-IUS MAIN OUTCOME MEASURES: Primary outcome was bleeding profile after LNG-IUS insertion. Secondary outcomes included rates of amenorrhea, intrauterine device (IUD) expulsion, IUD discontinuation, and unplanned pregnancy.

Results: Mean age at menarche was 11.6 years, with mean age at insertion of 16.9 (range 11-23). Most participants were white (n = 26, 74.3%). Von Willebrand disease was present in 16 patients (45.7%) and Ehlers-Danlos syndrome in 12 (34.3%). Most (91.4%) had tried at least 1 hormonal regimen prior to LNG-IUS. Most participants (81.8%) reported improvement in bleeding, with 60.6% reporting spotting or amenorrhea. LNG-IUS expulsion occurred in 3 participants (9.1%) within the first 21 days, despite hemostatic agents at time of insertion. Mean continuation was 5.08 years (95% CI, 4.24-5.92), with 79% likelihood that participants kept their IUD in place for at least 2.5 years, and some up to 6 years.

Conclusion: The 52-mg LNG-IUS is an effective treatment option for adolescents and young adults with heavy menstrual bleeding and a bleeding diathesis, with high rates of amenorrhea. Rates of IUD expulsion appeared higher during the first 30 days, but long-term continuation remained high.