Menstrual Suppression for Adolescents with Developmental Disabilities

doi:10.1016/j.jpag.2007.10.008

Journal of Pediatric and Adolescent Gynecology

Volume 22, Issue 3, June 2009, Pages 143-149

https://doi.org/10.1016/j.jpag.2007.10.008 Get rights and content

Abstract

The approach to menstrual suppression for adolescents with developmental disabilities has evolved considerably over the years due to changing philosophies and evolving treatment options. We review the medical management options available for menstrual suppression with a focus on the needs and treatment of adolescents with developmental disabilities.

Introduction

A variety of medical options are available to address the various concerns that caregivers have regarding adolescent girls with developmental disabilities. These options must meet the needs of women affected by a wide spectrum of developmental disabilities: a group ranging from highly functioning adolescents with mild cognitive impairment, who are actively involved in school and extracurricular activities, to severely handicapped adolescents who require complete care for all activities of daily living. A recent retrospective review of clinical characteristics and management of young women with developmental delay referred to a pediatric gynecology clinic revealed that while the primary purpose for consultation was menstrual related in 90% of cases, nearly half of the patients seen were still premenarchal.¹ These early consultations highlight caregiver anxiety about coping with menstruation and the need for counseling and education about what to expect and about available options.

The following paper will review the different medical management options available for menstrual suppression, with a focus on the needs and treatment of the developmentally disabled population. While surgical approaches such as endometrial ablation, tubal ligation, and hysterectomy, remain options for some patients, the following treatment choices are more appropriate initial management options and will be sufficient for most patients.

Section snippets

Depo-medroxyprogesterone acetate

Depo-medroxyprogesterone acetate (DMPA), an injectable progesterone, was approved for use as a contraceptive agent by the U.S. Food and Drug Administration (FDA) in 1992, and in Canada in 1997.² A 1992 survey of prescription practices of adolescent health care providers found that the strongest potential indication for DMPA administration was for adolescents with developmental disabilities.³ A more recent review still supports DMPA as a common treatment choice for this population.¹ A

Combined Oral Contraceptives: Extended Regimen

The use of oral contraceptive pills (OCP) in women with developmental disabilities has not been well studied. One study did examine the experience of a group of cognitively impaired female adolescents taking OCP with traditional cyclical use.⁴ Compared to other contraceptive methods, it found that OCP received the lowest average satisfaction rating, 2.7/5, compared to 4/5 for DMPA, and 5/5 for the copper intrauterine device (IUD).⁴ It is unknown if an extended or continuous regimen of the OCP

Transdermal Contraceptive Patch

The recent development of novel delivery systems that eliminate the need for compliance with daily pill taking present alternative methods for families and patients to achieve menstrual suppression. The transdermal contraceptive patch marketed in the U.S. contains 6.0 mg norelgestromine (NGMN) and 0.75 mg ethinyl estradiol (EE). A bioequivalent formulation marketed in Canada contains 6.0 mg NGMN and 0.60 mg EE. Both products are designed to deliver 20 mcg of EE and 150 mcg of NGMN to the

Levonorgestrel Intrauterine System

The U.S. FDA approved the levonorgestrel intrauterine system (LNG-IUS) as a 5-year contraceptive agent in 2000. This intrauterine device is also being investigated for a variety of other uses, including idiopathic menorrhagia, endometriosis associated pelvic pain, hyperplasia and endometrial adenocarcinoma.

Once inserted into the uterine cavity, the LNG IUS releases 20 mcg/d progestin locally. Plasma levels of levonorgestrel reach a steady state of 100–200 pg/ml within the first few weeks after

Conclusion

The various medical treatment options available for menstrual suppression in adolescent women with developmental disabilities include DMPA, extended regimen of OCP or the transdermal contraceptive patch, and LNG IUS. Each option presents a variety of advantages and disadvantages, which must be considered for each individual patient. Furthermore, these methods are reversible and, therefore, if one option does not work to the satisfaction of the patient and caregiver, another option may be

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Depo-provera associated with weight gain in Navajo women

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Effect of prolonged use of injectable hormonal contraceptives on blood pressure and body weight

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Cited by (19)

Caregiver goals and satisfaction for menstrual suppression in adolescent females with developmental disabilities: A prospective cohort study
2023, Disability and Health Journal
Adolescents with developmental disabilities and their caregivers often seek menstrual management. Caregivers frequently serve as medical decision-makers, and little is known about caregiver goals for menstrual management and satisfaction over time.
Assess caregiver reasons for initiating menstrual management in adolescents with disabilities and satisfaction over 12 months.
Prospective cohort study of caregivers of adolescents with developmental disabilities seeking menstrual management at a pediatric and adolescent gynecology clinic. Data derive from caregiver surveys and adolescents' electronic medical records.
Ninety-two caregiver-adolescent pairs enrolled. The mean age of adolescents was 14.4 (±2.6). The most common method started was levonorgestrel intrauterine device (LNG-IUD; 52, 56.5%), followed by oral norethindrone acetate (21, 22.8%). Caregivers cited hygiene concerns (84.8%), behavioral problems (52.2%), and heavy/excessive bleeding (48.9%) as reasons for initiating menstrual suppression. Caregivers who identified hygiene or heavy/excessive bleeding as the most important reason for management were more likely to select LNG-IUD (p = 0.009). Caregivers who cited behavioral/mood or seizure concerns as the most important reason were more likely to choose other methods (p < 0.05). At 12 months, caregiver satisfaction with all methods was high (66.2–86.9 on a 100-point scale). For every additional day of bleeding, satisfaction decreased by 3.7 points (95% CI: 2.3–5.0).
Caregiver satisfaction with all methods is high; however, it negatively correlates with days of bleeding. Caregiver reasons for menstrual suppression influence the method chosen. Management may reflect both patient and caregiver priorities; research is needed to better understand shared decision-making models that promote reproductive autonomy in adolescents with a developmental disability.
Case Report of the Successful Use of Mirena Levonorgestrel Intrauterine System in a Patient with Didelphys Uterus and Obstructed Hemivagina
2019, Journal of Pediatric and Adolescent Gynecology
The Mirena levonorgestrel intrauterine system (IUS; Bayer HealthCare Pharmaceuticals) is frequently used for menstrual suppression in adolescents with special needs. However, the presence of a uterine anomaly is generally considered a contraindication to IUS insertion, thereby excluding a potentially highly effective option for this patient population.
A Mirena IUS was used in a medically and surgically complex special needs 14-year-old adolescent with a didelphys uterus and obstructed hemivagina. With the IUS inserted into the unobstructed uterus, she achieved amenorrhea and significant reduction in pain, with interval reduction in hematometra in the contralateral obstructed uterus.
We report the successful use of the Mirena IUS in a patient with a Müllerian anomaly, supporting the use of this device in carefully selected patients.
N° 313 - Suppression menstruelle en présence de circonstances particulières
2019, Journal of Obstetrics and Gynaecology Canada
Offrir, aux fournisseurs de soins de santé, un document de consensus canadien comptant des recommandations pour ce qui est de la suppression menstruelle chez les patientes qui font face à des obstacles physiques et/ou cognitifs ou chez les patientes qui font l'objet d'un traitement contre le cancer et pour lesquelles les règles pourraient exercer un effet délétère sur la santé.
Le présent document analyse les options disponibles aux fins de la suppression menstruelle, les indications, les contre-indications et les effets indésirables (tant immédiats qu'à long terme) propres à cette dernière, et les explorations et le monitorage nécessaires tout au long de la suppression.
Les cliniciens seront mieux renseignés au sujet des options et des indications propres à la suppression menstruelle chez les patientes qui présentent des déficiences cognitives et/ou physiques et chez les patientes qui font l'objet d'une chimiothérapie, d'une radiothérapie ou d'autres traitements contre le cancer.
La littérature publiée a été récupérée par l'intermédiaire de recherches menées dans Medline, EMBASE, OVID et The Cochrane Library au moyen d'un vocabulaire contrôlé et de mots clés appropriés (p. ex. « heavy menstrual bleeding », « menstrual suppression », « chemotherapy/radiation », « cognitive disability », « physical disability », « learning disability »). Les résultats ont été restreints aux analyses systématiques, aux essais comparatifs randomisés, aux études observationnelles et aux études pilotes. Aucune restriction n'a été imposée en matière de langue ou de date. Les recherches ont été mises à jour de façon régulière et du nouveau matériel a été intégré à la directive clinique jusqu'en septembre 2013. La littérature grise (non publiée) a été identifiée par l'intermédiaire de recherches menées dans les sites Web d'organismes s'intéressant à l'évaluation des technologies dans le domaine de la santé et d'organismes connexes, dans des collections de directives cliniques, dans des registres d'essais cliniques et auprès de sociétés de spécialité médicale nationales et internationales.
La qualité des résultats est évaluée au moyen des critères décrits dans le rapport du Groupe d'étude canadien sur les soins de santé préventifs (Tableau 1).
La rédaction (à l'intention des fournisseurs de soins de santé) de lignes directrices traitant particulièrement de la suppression menstruelle au sein des populations exposées à des risques s'avère nécessaire.
- 1
  La suppression menstruelle et l'aménorrhée thérapeutique devraient être considérées comme étant des options sûres et viables pour les femmes qui doivent ou qui souhaitent obtenir une atténuation ou l'élimination de leurs règles (II-2A).
- 2
  Chez les jeunes femmes qui présentent des déficiences sur le plan du développement, la suppression menstruelle ne devrait être mise en œuvre qu'après l'apparition des premières règles (II-2B).
- 3
  Des agents hormonaux combinés ou ne contenant que de la progestérone peuvent être utilisés de façon prolongée ou continue aux fins de l'obtention d'une suppression menstruelle (I-A).
- 4
  La tenue d'une consultation en gynécologie devrait être envisagée avant la mise en œuvre d'un traitement chez toutes les femmes préménopausées qui sont exposées au risque de connaître des saignements utérins anormaux attribuables à la chimiothérapie (II-1A).
- 5
  L'acétate de leuprolide ou la contraception hormonale combinée devraient être considérés comme des moyens grandement efficaces d'assurer la prévention des saignements utérins anormaux, lorsqu'ils sont mis en œuvre avant l'administration d'un traitement anticancéreux chez des femmes préménopausées exposées à un risque de thrombocytopénie (II-2A).
No. 313-Menstrual Suppression in Special Circumstances
2019, Journal of Obstetrics and Gynaecology Canada
To provide a Canadian consensus document for health care providers with recommendations for menstrual suppression in patients with physical and/or cognitive challenges or those who are undergoing cancer treatment in whom menstruation may have a deleterious effect on their health.
This document reviews the options available for menstrual suppression, its specific indications, contraindications, and side effects, both immediate and long-term, and the investigations and monitoring necessary throughout suppression.
Clinicians will be better informed about the options and indications for menstrual suppression in patients with cognitive and/or physical disabilities and patients undergoing chemotherapy, radiation, or other treatments for cancer.
Published literature was retrieved through searches of Medline, EMBASE, OVID, and the Cochrane Library using appropriate controlled vocabulary and key words (heavy menstrual bleeding, menstrual suppression, chemotherapy/radiation, cognitive disability, physical disability, learning disability). Results were restricted to systematic reviews, randomized controlled trials, observation studies, and pilot studies. There were no language or date restrictions. Searches were updated on a regular basis and new material was incorporated into the guideline until September 2013. Grey (unpublished) literature was identified through searching websites of health technology assessment and health technology-related agencies, clinical practice guideline collections, clinical trial registries, and national and international medical specialty societies.
The quality of evidence was rated using the criteria described in the Report of the Canadian Task Force on Preventive Health Care (Table 1).
There is a need for specific guidelines on menstrual suppression in at-risk populations for health care providers.
- 1
  Menstrual suppression and therapeutic amenorrhea should be considered safe and viable options for women who need or want to have fewer or no menses (II-2A).
- 2
  Menstrual suppression should not be initiated in young women with developmental disabilities until after the onset of menses (II-2B).
- 3
  Combined hormonal or progesterone-only products can be used in an extended or continuous manner to obtain menstrual suppression (I-A).
- 4
  Gynaecologic consultation should be considered prior to the initiation of treatment in all premenopausal women at risk for abnormal uterine bleeding from chemotherapy (II-1A).
- 5
  Leuprolide acetate or combined hormonal contraception should be considered highly effective in preventing abnormal uterine bleeding when initiated prior to cancer treatment in premenopausal women at risk for thrombocytopenia (II-2A).
Suppression menstruelle en présence de circonstances particulières
2016, Journal of Obstetrics and Gynaecology Canada
Citation Excerpt :
La malnutrition ou la présence de tubes de gastrostomie peuvent affecter la voie d'administration et l'absorption des médicaments.5 Les personnes immobiles ou confinées à un fauteuil roulant pourraient être exposées à un risque accru de thromboembolie veineuse.6,18 Dans le cadre d'une récente étude de cohorte portant sur des adolescentes présentant des déficiences, aucune des participantes confinées de façon permanente à un fauteuil roulant qui utilisaient un CO ou des timbres n'en est venue à présenter une thromboembolie au cours de la période d'étude.8
Offrir, aux fournisseurs de soins de santé, un document de consensus canadien comptant des recommandations pour ce qui est de la suppression menstruelle chez les patientes qui font face à des obstacles physiques et/ou cognitifs ou chez les patientes qui font l'objet d'un traitement contre le cancer et pour lesquelles les règles pourraient exercer un effet délétère sur la santé.
Le présent document analyse les options disponibles aux fins de la suppression menstruelle, les indications, les contre-indications et les effets indésirables (tant immédiats qu'à long terme) propres à cette dernière, et les explorations et le monitorage nécessaires tout au long de la suppression.
Les cliniciens seront mieux renseignés au sujet des options et des indications propres à la suppression menstruelle chez les patientes qui présentent des déficiences cognitives et/ou physiques et chez les patientes qui font l'objet d'une chimiothérapie, d'une radiothérapie ou d'autres traitements contre le cancer.
La littérature publiée a été récupérée par l'intermédiaire de recherches menées dans Medline, EMBASE, OVID et The Cochrane Library au moyen d'un vocabulaire contrôlé et de mots clés appropriés (p. ex. « heavy menstrual bleeding », « menstrual suppression », « chemotherapy/radiation », « cognitive disability », « physical disability », « learning disability »). Les résultats ont été restreints aux analyses systématiques, aux essais comparatifs randomisés, aux études observationnelles et aux études pilotes. Aucune restriction n'a été imposée en matière de langue ou de date. Les recherches ont été mises à jour de façon régulière et du nouveau matériel a été intégré à la directive clinique jusqu'en septembre 2013. La littérature grise (non publiée) a été identifiée par l'intermédiaire de recherches menées dans les sites Web d'organismes s'intéressant à l'évaluation des technologies dans le domaine de la santé et d'organismes connexes, dans des collections de directives cliniques, dans des registres d'essais cliniques et auprès de sociétés de spécialité médicale nationales et internationales.
La qualité des résultats est évaluée au moyen des critères décrits dans le rapport du Groupe d'étude canadien sur les soins de santé préventifs (Tableau 1).
La rédaction (à l'intention des fournisseurs de soins de santé) de lignes directrices traitant particulièrement de la suppression menstruelle au sein des populations exposées à des risques s'avère nécessaire.
- 1.
  La suppression menstruelle et l'aménorrhée thérapeutique devraient être considérées comme étant des options sûres et viables pour les femmes qui doivent ou qui souhaitent obtenir une atténuation ou l'élimination de leurs règles. (II-2A)
- 2.
  Chez les jeunes femmes qui présentent des déficiences sur le plan du développement, la suppression menstruelle ne devrait être mise en œuvre qu'après l'apparition des premières règles. (II-2B)
- 3.
  Des agents hormonaux combinés ou ne contenant que de la progestérone peuvent être utilisés de façon prolongée ou continue aux fins de l'obtention d'une suppression menstruelle. (I-A)
- 4.
  La tenue d'une consultation en gynécologie devrait être envisagée avant la mise en œuvre d'un traitement chez toutes les femmes préménopausées qui sont exposées au risque de connaître des saignements utérins anormaux attribuables à la chimiothérapie. (II-1A)
- 5.
  L'acétate de leuprolide ou la contraception hormonale combinée devraient être considérés comme des moyens grandement efficaces d'assurer la prévention des saignements utérins anormaux, lorsqu'ils sont mis en œuvre avant l'administration d'un traitement anticancéreux chez des femmes préménopausées exposées à un risque de thrombocytopénie. (II-2A)
Complication rates associated with levonorgestrel intrauterine system use in adolescents with developmental disabilities
2014, Journal of Pediatric and Adolescent Gynecology
Citation Excerpt :
No uterine perforation, infections, or pregnancies were reported. Reviews of menstrual management options for adolescents with developmental delay suggest that the LNG IUS would be beneficial in this population given its favorable effects on the menstrual profile5–10; however, only 1 study has directly examined its use in this population.11 A survey of New Zealand Obstetricians and Gynecologists revealed that the most commonly identified indication for LNG IUS insertion in an adolescent was intellectual disability (67%).12
To assess the complication rates with the use of the levonorgestrel intrauterine system (LNG IUS) in adolescents with developmental disabilities.
Retrospective chart review of all adolescents with developmental disabilities taken to the operating room for LNG IUS insertion between January 2000 and July 2009 at the Royal Children's Hospital, Melbourne, Australia. Cases identified from the surgical database, and medical records reviewed.
Complication rates with LNG IUS use in adolescents with development disabilities: non-insertion, uterine perforation, infection, and expulsion.
Fifty-six adolescents with developmental disabilities had an attempted LNG IUS insertion. The average age at insertion was 15.6 years (range 10.5-21.5 y). The LNG IUS was used as first line therapy in 14 cases (25%). Pre-insertion ultrasonography was ordered in 48% of cases, out of which 5 cases had uterine lengths <6 cm. Despite this, 4 of these cases had successful insertions. Two insertion attempts were abandoned intra-operatively (3.6%); one due to inadequate uterine length of 4 cm, and the other due to anatomic distortion. One spontaneous expulsion occurred at approximately 5 months (1.9%). Four IUDs were removed prematurely (7.4% withdrawal rate); 1 for persistent abdominal pain, 1 for irregular bleeding, and 2 for suspected malpositions. There were no documented cases of infection, perforation, or pregnancy.
Our experience in this population has been very positive and confirms that complication rates are comparable to that in adults.

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Mini-ReviewMenstrual Suppression for Adolescents with Developmental Disabilities

Abstract

Introduction

Section snippets

Depo-medroxyprogesterone acetate

Combined Oral Contraceptives: Extended Regimen

Transdermal Contraceptive Patch

Levonorgestrel Intrauterine System

Conclusion

Menstrual and contraceptive issues among young women with developmental delay: a retrospective review of cases at the Hospital for Sick Children, Toronto

J Pediatr Adolesc Gynecol

Long-acting injectable contraception with depot medroxyprogesterone acetate

Am J Obstet Gynecol

Use of injectable progestin (medroxyprogesterone acetate) in adolescent health care

Contraception

Issues in fertility control for mentally retarded female adolescents: I. Sexual activity, sexual abuse, and contraception

Pediatrics

The conservative management of abnormal bleeding in teenagers with developmental disabilities

J Pediatr Adolesc Gynecol

Contraception for patients with psychiatric or medical disorders

Am J Obstet Gynecol

Treatment of seizures with medroxyprogesterone acetate: preliminary report

Neurology

Depot medroxyprogesterone acetate contraception in women with medical problems

J Reprod Med

The treatment of cyclical behavioral changes in women with mental disabilities

J Pediatr Adolesc Gynecol

A comparative study of one-year weight gain among users of medroxyprogesterone acetate, levonorgestrel implants, and oral contraceptives

Contraception

Metabolic parameter, bleeding, and weight changes in U.S. women using progestin only contraceptives

Contraception

Adolescent use of the monthly contraceptive injection

J Pediatr Adolesc Gynecol

Comparison of weight increase in users of depot medroxyprogesterone acetate and copper IUD up to 5 years

Contraception

Depo-provera associated with weight gain in Navajo women

Contraception

Effect of prolonged use of injectable hormonal contraceptives on blood pressure and body weight

Mymensingh Med J

Overweight teens at increased risk for weight gain while using depot medroxyprogesterone acetate

J Pediatr Adolesc Gynecol

Weight gain, adiposity, and eating behaviors among adolescent females on depot medroxyprogesterone acetate (DMPA)

J Pediatr Adolesc Gynecol

SOGC Clinical Practice Guidelines No. 143-Part 2 of 3. Canadian Contraception Consensus

J Obstet Gynaecol Can

SOGC Committee Opinion No. 94. Injectable Medroxyprogesterone Acetate for Contraception

J Soc Obstet Gynaecol Can

Pre-optic and hypothalamic neurons accumulate [3H]medroxyprogesterone acetate in male cynomolgus monkeys

Life Sci

Depot medroxyprogesterone acetate and bone mineral density in adolescents–the Black Box Warning: a Position Paper of the Society for Adolescent Medicine

J Adolesc Health

A prospective comparison of bone density in adolescent girls receiving depot medroxyprogesterone acetate (Depo-Provera), levonorgestrel (Norplant), or oral contraceptives

J Pediatr

Depot medroxyprogesterone acetate, oral contraceptives and bone mineral density in a cohort of adolescent girls

J Adolesc Health

Bone mineral density in a cohort of adolescent women using depot medroxyprogesterone acetate for one to two years

J Adolesc Health

Bone mineral density in adolescent females using depot medroxyprogesterone acetate

J Pediatr Adolesc Gynecol

Change in bone mineral density among adolescent women using and discontinuing depot medroxyprogesterone acetate contraception

Arch Pediatr Adolesc Med

Extending the duration of active oral contraceptive pills to manage hormone withdrawal symptoms

Obstet Gynecol

Bleeding patterns and patient acceptability of standard or continuous dosing regimens of a low-dose oral contraceptive: a randomized trial

Contraception

Menstrual reduction with extended use of combination oral contraceptive pills: randomized controlled trial

Obstet Gynecol

Long-interval treatment regimen with a desogestrel-containing oral contraceptive

Contraception

Mini-Review
Menstrual Suppression for Adolescents with Developmental Disabilities