Adequate menstrual suppression in adolescents with inherited bleeding disorders often requires multiple treatment changes: Retrospective cohort study of a multidisciplinary clinic.

Heavy menstrual bleeding (HMB) is often the presenting symptom for females with inherited bleeding disorders (IBD). Multidisciplinary clinics leverage the expertise of hematologists and women's health specialists. This study characterizes the complexity of HMB management for adolescents with IBDs from a large multidisciplinary clinic. Adolescents often required multiple different menstrual suppression treatments, with only about 20% achieving acceptable suppression with their first treatment. Adolescents switched therapy most often for uncontrolled bleeding, followed by adverse effects, and patient preference. Given the difficulty in achieving adequate menstrual suppression, multidisciplinary clinics offer necessary expertise in accomplishing bleeding control with minimal adverse effects.

Heavy Menstrual Bleeding in Adolescents with Joint Hypermobility Syndrome/Hypermobile-Type Ehlers-Danlos: A Review.

Heavy menstrual bleeding has a high prevalence and is well documented in adult patients with hypermobile-type Ehlers-Danlos syndrome, but there is limited research surrounding work-up and treatment for the adolescent population. Excessive menstrual blood loss can significantly interfere with emotional and physical quality of life. A provider should acquire a comprehensive medical and menstrual history and focused physical examination, as well as baseline laboratory studies, to determine the presence of anemia or underlying bleeding disorder. Use of a pictorial blood assessment chart may be considered to help quantify the amount of bleeding. Treatment to reduce heavy menstrual flow and referral to specialty care should be initiated swiftly to improve quality of life for this population. [Pediatr Ann. 2024;53(3):e104-e108.].

Prophylactic and therapeutic strategies for intraoperative bleeding in women with von Willebrand disease and heavy menstrual bleeding: A systematic review.

BACKGROUND: Optimal peri-operative management for women with Von Willebrand disease (VWD) and heavy menstrual bleeding (HMB) remains undetermined. AIM AND METHODS: To evaluate (pre)operative management in relation to (post)operative bleeding after endometrial ablation (EA) and hysterectomy in VWD women with HMB by performing a database search between 1994 and 2023. RESULTS: Eleven cohort studies and 1 case-report were included, of overall 'low' quality, describing 691 operative procedures. Prophylaxis (Desmopressin, clotting factor concentrates or tranexamic acid) to prevent bleeding was described in 100% (30/30) of EA procedures and in 4% (24/661) of hysterectomies. Bleeding complications despite prophylaxis were described in 13% (3/24) of hysterectomies vs 0% (0/30) in EA. CONCLUSION: VWD women often seem to experience bleeding complications during hysterectomy and all women with VWD received preprocedural hemostatic agents during EA, indicating potential under- and overdosing of current prophylactic strategies. Prospective studies are needed to determine the optimal (pre)operative strategy for gynecological surgical procedures in women with VWD.

Reflections on access to care for heavy menstrual bleeding: Past, present, and in times of the COVID-19 pandemic.

The symptom of heavy menstrual bleeding (HMB) affects at least a quarter of reproductive-age menstruators. However, given the variance in diagnosing the underlying causes, barriers, and inequity in access to care for HMB, and therefore reporting of HMB, this figure is likely to be a gross underestimate. HMB can have a detrimental impact on quality of life. From the limited reports available it is estimated that around 50%-80% of people with HMB do not seek care for this debilitating symptom, and for those that do, it may take years until the first treatment action. Almost half of those with HMB believe their condition is unworthy of treatment, that there is no treatment available, or that it is "normal". The term "medical gaslighting" has recently been used to describe how healthcare professionals disregard people's symptoms. This has the ensuing effect of negatively compounding self-doubt and embarrassment around menstrual bleeding, creating a cycle of diminished experience inhibiting further seeking of care. There is a scarcity of intervention studies informing increased access to care. Multilevel approaches are needed to increase access to care and support for those with HMB. During the COVID-19 global pandemic, barriers to care access and support for HMB have been exacerbated and, given the significant pressures that this pandemic has placed on healthcare services worldwide, it will take many years to recover. In the meantime, it is crucial to ensure that medically "benign" conditions such as the symptom of HMB are not overlooked.

Qualitative study exploring which research outcomes best reflect women's experiences of heavy menstrual bleeding: stakeholder involvement in development of a core outcome set.

OBJECTIVE: This work contributed to the development of a core outcome set (COS) for heavy menstrual bleeding (HMB). The objective was to determine which research outcomes best reflect how HMB affects women's lives and to identify additional research outcomes, not previously reported. It was important to explore and record participants' reasoning for prioritising outcomes and use this information to reinforce the patients' voice during later phases of the COS development. DESIGN: Patient workshop discussions and telephone interviews. SETTING: East London teaching hospital. PARTICIPANTS: Inclusion criteria were that participants must be over 18 years old, that either they or their partner had a history of HMB and that they had a good understanding of written and spoken English. RESULTS: 41 participants were recruited for the study. 8 women and 1 man completed the study. The eight female participants were representative of the different underlying causes and treatments for HMB. Participants ranged in age from their early 20s to their 60s and represented a range of ethnic groups. The five main themes that were identified as being important to patients were: 'restriction', 'relationships and isolation', 'emotions and self-perception', 'pain' and 'perceptions of treatment'. We identified eight coding nodes that did not correspond with our list of previously reported outcomes in studies of HMB. These nodes were consolidated and became five new outcomes for potential inclusion in the COS. CONCLUSIONS: HMB stops women living their lives as they would wish. It affects their relationships, education, careers, reproductive wishes, social life and mental health. This is a condition of girls and women in the prime of their lives, but for many, the constant threat of a heavy period starting means that they sacrifice that freedom. The societal and economic costs of women being incapacitated every month has an effect on everyone. TRIAL REGISTRATION: The COS study is registered with the COMET (Core Outcome Measures in Effectiveness Trials) Initiative-project reference number 789.

Obesity and menstrual disorders.

Obesity is a growing public health concern and is associated with a range of menstrual disorders, including heavy menstrual bleeding, oligomenorrhea, dysmenorrhea, and endometrial pathology. Investigations may be more logistically challenging in those in the population with obesity, and because of the heightened risk of endometrial malignancy, there should be a low threshold for biopsy to exclude endometrial hyperplasia. Although treatment modalities for women with obesity are broadly similar to those with a normal BMI, additional consideration must be given to the risks associated with estrogen in obesity. Outpatient management of heavy menstrual bleeding is a developing field and outpatient treatment modalities are preferable in the population with obesity to avoid the morbidity associated with anesthetics.

Standardising outcome reporting for clinical trials of interventions for heavy menstrual bleeding: Development of a core outcome set.

OBJECTIVE: To develop a core outcome set for heavy menstrual bleeding (HMB). DESIGN: Core outcome set (COS) development methodology described by the COMET initiative. SETTING: University hospital gynaecology department, online international survey and web-based international consensus meetings. POPULATION OR SAMPLE: An international collaboration of stakeholders (clinicians, patients, academics, guideline developers) from 20 countries and 6 continents. METHODS: Phase 1: Systematic review of previously reported outcomes to identify potential core outcomes. Phase 2: Qualitative studies with patients to identify outcomes most important to them. Phase 3: Online two-round Delphi survey to achieve consensus about which outcomes are most important. Phase 4: A consensus meeting to finalise the COS. MAIN OUTCOME MEASURES: Outcome importance was assessed in the Delphi survey on a 9-point scale. RESULTS: From the 'long list' of 114, 10 outcomes were included in the final COS: subjective blood loss; flooding; menstrual cycle metrics; severity of dysmenorrhoea; number of days with dysmenorrhoea; quality of life; adverse events; patient satisfaction; number of patients going on to have further treatment for HMB and haemoglobin level. CONCLUSIONS: The final COS includes variables that are feasible for use in clinical trials in all resource settings and apply to all known underlying causes of the symptom of HMB. These outcomes should be reported in all future trials of interventions, their systematic reviews, and clinical guidelines to underpin policy.

Abnormal Uterine Bleeding.

Abnormal uterine bleeding is a common problem in premenopausal women and refers to uterine bleeding that is abnormal in frequency, duration, volume, and/or regularity. Etiologies can be classified using the PALM-COIEN system. Patients should receive a comprehensive history and physical with special attention to menstrual, sexual, and family history. Physical examination needs to include a pelvic examination with speculum and bimanual components. All patients need to have a pregnancy test and CBC with platelets. Treatments vary by etiology. Medical treatments include levonorgestrel intrauterine devices, oral contraceptive pills, and tranexamic acid. Surgical treatment options include endometrial ablation and hysterectomy.

Menstrual Technology Innovations and the Implications for Heavy Menstrual Bleeding.

Menstruation is a personal and cultural experience with financial and health implications. Menstruation historically has been managed with disposable commodities, including tampons and pads. New technologies, including underwear and menstrual cups and discs, have emerged to address diverse menstrual needs such as prioritization of sustainability, discretion, and inclusivity. New technologies are not routinely integrated into history taking or validated questionnaires, which currently rely on traditional tampon and pad use for identifying individuals with heavy menstrual bleeding. Review of menstrual technologies and accessories provides insight to empower gynecologists and other clinicians to take comprehensive menstrual histories, including strategies for identification of heavy menstrual bleeding and troubleshooting menstrual disturbances, within the context of new menstrual technologies.

The diagnosis, natural history, and management of von Willebrand disease in women in the age of guidelines.

INTRODUCTION: Women and girls with bleeding disorders face multiple bleeding challenges throughout their life. The most significant morbidity and mortality are due to heavy menstrual bleeding and postpartum hemorrhage in their reproductive years. The ASH/ISTH/NHF/WFH 2021 guidelines on diagnosing and managing von Willebrand disease (VWD) provide several new updates. AREAS COVERED: Women with VWD have a higher prevalence of heavy menstrual bleeding. The subpopulation of adolescents is particularly vulnerable, as the diagnosis is often delayed with increased comorbidity of iron deficiency anemia and associated symptoms. A detailed review is done on the prevalence of bleeding-related complications, especially heavy menstrual bleeding (HMB) and post-partum hemorrhage (PPH). The management strategies are also reviewed in detail, with a specific focus on the target factor levels and the use of antifibrinolytics. EXPERT OPINION: The 2021 ASH/ISTH/NHF/WFH diagnostic and management recommendations are reviewed with a specific focus on hormonal methods of HMB management and antifibrinolytics in this situation. The reviewed topics include neuraxial anesthesia, factor cutoff, and tranexamic acid use in the postpartum period.

Von Willebrand Disease-Specific Aspects in Women.

Von Willebrand disease (VWD) is the most common inherited bleeding disorder, which results from a deficiency or dysfunction of von Willebrand factor (VWF). The major symptoms of patients affected by VWD include mucocutaneous and gastrointestinal bleeding, easy bruising, and prolonged provoked bleeding due to injury or surgery. Although women and men are equally likely to be affected by VWD, women continue to be disproportionately affected by the bleeding challenges. Women with VWD suffer from sex-specific symptoms, such as menorrhagia, and are at higher risk of reproductive problems and recurrent miscarriage. Furthermore, pregnant women with VWD are more likely at higher risk of suffering from primary and secondary peripartal hemorrhage and anemia and the need for transfusions. Despite being affected by gynecologic and obstetrical bleeding, women face multiple barriers in obtaining an accurate diagnosis. This constitutes a problem that needs to be addressed, and early appropriate medical care should be ensured. There are several effective treatment options for women with VWD that can significantly improve their quality of life, including desmopressin, VWF concentrates, hormonal therapy, and antifibrinolytic therapy. During pregnancy, the monitoring of VWF activity levels is essential. The peripartal management depends on the type of VWD and on the measured levels of VWF levels and activity prior to delivery.

Gynaecological management of women with inherited bleeding disorders. A UK Haemophilia Centres Doctors' Organisation Guideline.

Women with inherited bleeding disorders (IBDs) may present to healthcare professionals in a variety of ways and commonly will be encountered by either haematology or gynaecology services. Heavy menstrual bleeding is very often the first manifestation of an IBD. There is a wide variation in severity of bleeding for women with IBD and diagnosis and subsequent management of their condition requires multidisciplinary specialised care which is tailored to the individual and includes excellent cross-specialty communication between gynaecology and haematology teams. This guideline is intended for both haematologists and gynaecologists who are involved in the diagnosis and management of women with bleeding disorders. It sets out recommendations about how to investigate heavy menstrual bleeding (HMB), the commonest presentation for women with IBD to hospital services, to guide physicians about how to diagnose an IBD and covers the management of women with known IBD and HMB. The second section sets out recommendations for patients known to have IBD and covers management of patients with IBD in the setting of gynaecological surgery and management for all other non-surgical gynaecological situations.

Emerging Treatment Options for Fibroids.

Leiomyomas (fibroids) are common, usually benign, monoclonal tumors that arise from the uterine myometrium. Clinical presentation is variable; some patients are asymptomatic, whereas others experience heavy menstrual bleeding, pain, bulk symptoms, and/or alterations in fertility. Previously, treatment options for fibroids were largely surgical. However, over the last decade, options have grown to include many medical and procedural options that allow for uterine and fertility preservation. Clinicians must become familiar with these options to adequately counsel patients desiring treatment of fibroids.

Evaluation and management of abnormal uterine bleeding.

Abnormal uterine bleeding (AUB) is one of the commonest complaints of women in reproductive age and non-gravid state that brings them to the attention of the primary care doctor or the gynaecologist. Anovulation without any medical illness or pelvic pathology seems to be the common cause. Bleeding due to a wide variation in pathology both inside and outside the reproductive tract can be termed as anovulatory bleeding. Therefore, it is mandatory to elicit a focused menstrual history and appropriate evaluation followed by a pelvic examination. This includes a vaginal speculum examination to differentiate anovulatory bleeding from other causes of bleeding. In contrast, Heavy menstrual bleeding (HMB) is referred to as an ovulatory bleeding exceeding 8 days duration and is often caused by uterine fibroids or adenomyosis, a copper IUD or coagulation disorders. PALM-COEIN classification is a system designed by the Federation Internationale de Gynaecologie et d'Obstetrique to define the precise underlying causes of AUB. Aetiology of AUB can be classified as the following acronym "PALM-COEIN": Polyp, Adenomyosis, Leiomyoma, Malignancy and hyperplasia, Coagulopathy, Ovulatory dysfunction, Endometrial, Iatrogenic and Not yet classified. AUB describes a range of symptoms, such as HMB, intermenstrual bleeding (IMB) and a combination of both heavy and prolonged menstrual bleeding (MB). Dysfunctional uterine bleeding (DUB) and menorrhagia are now better described as AUB. Newborn girls sometimes spot for a few days after birth, due to placental oestrogenic stimulation of the endometrium in utero.

Complex family planning and pediatric hematology oncology integrated clinic for young people with blood disorders and heavy or abnormal menstrual bleeding.

OBJECTIVES: To describe practice patterns of an integrated complex family planning-pediatric hematology oncology clinic for patients with blood disorders STUDY DESIGN: We retrospectively evaluated the outcomes of patients who had an initial consultation for blood disorders impacting menstrual bleeding in an integrated complex family planning-pediatric hematology oncology clinic from October 2015 to September 2020. We reviewed all charts to extract medical and gynecologic history, blood disorder diagnosis, hormonal treatment prior to and following initial consultation, subsequent visits to the integrated clinic, and hormonal treatment up to 24 months after initial consultation. RESULTS: We saw 47 patients; their most common blood disorder diagnosis was protein defect (14 of 47, 30%). Most patients (30 of 47, 64%) were not using any hormonal treatment prior to their initial consultation. After the initial consultation, 26 (55%) elected to start, change, or discontinue hormonal treatment for abnormal menstrual bleeding, the most common treatment being combined hormonal contraception (CHC, 22 of 47, 47%), alone or as dual therapy. Over the study duration, 36 patients (77%) initiated, changed, or discontinued their hormone treatment, 22 (61%) of whom changed their treatment plan more than once. CHC usage decreased from 19 of 47 (40%) to 8 of 37 (22%) and hormonal device usage, particularly the implant, increased from 9 of 47 (19%) to 11 of 37 (30%) over the 24 months from initial consultation. CONCLUSION: Most patients in an integrated complex family planning-pediatric hematology oncology clinic will change their menstrual bleeding hormone treatment with initial consultation, although management may require multiple changes. The most common treatment 24 months following the initial consultation was hormonal devices. IMPLICATIONS: Patients with blood disorders affecting menstrual bleeding have complex needs that could be addressed by an integrated complex family planning-pediatric hematology oncology clinic. Most patients require multiple changes in treatment to achieve adequate control of their bleeding, and patients were more likely to choose hormonal devices for management over time.

Fifteen-minute consultation: Guide to the young person with menorrhagia and dysmenorrhoea.

Adolescents who menstruate commonly present to acute paediatric services.

A Retrospective Comparison of Time to Cessation of Acute Heavy Menstrual Bleeding in Adolescents Following Two Dose Regimens of Combined Oral Hormonal Therapy.

STUDY OBJECTIVE: Although multiple hormonal treatment strategies are effective in decreasing heavy menstrual bleeding (HMB) in adolescents, few studies have compared the relative effectiveness of hormone therapy on the basis of dose. DESIGN: Retrospective chart review SETTING: Urban tertiary care institution PARTICIPANTS: Adolescents aged 9-19 years with acute HMB and anemia in 2008-2018 INTERVENTIONS: We used billing codes to identify encounters for acute HMB with hemoglobin less than 12 mg/dl and reviewed initial treatment and time until resolution of acute HMB. We excluded patients who had previously used gonadal steroids or did not complete follow-up. We then compared patients who received combined oral ethinyl estradiol with progestin (EE/P) in standard dosing (EE ≤35 mcg/day) vs taper dosing (EE >35mcg/day in any step-down regimen). MAIN OUTCOME MEASURES: Time until patient-reported resolution of acute HMB, measured in days from initial treatment RESULTS: Of 207 patients with vaginal bleeding and anemia, 90 met the criteria for review of therapy type and dose. Users of combined EE/P were hormone-naïve in 28/33 (84.8%) of those who initiated standard EE/P and 22/32 (68.8%) who initiated taper dosing. Bleeding duration was available for 15/28 (53.6%) and 18/22 (81.8%). Resolution of HMB occurred in 0-9 days with standard dosing (mean ±SD 2.1 ± 2.3 days) versus 1-15 days for taper dosing (4.9 ± 4.7; p = 0.04). Excluding six outliers of zero or more than 10 days, HMB ceased by 2.6 and 3 days (n = 12 and 15; p = 0.62). CONCLUSION: Currently recommended higher dose combined hormonal regimens do not appear to shorten the time to resolution of acute HMB in adolescents.

Heavy Menstrual Bleeding in Adolescent: Normal or a Sign of an Underlying Disease?

Heavy, and often irregular, menstrual bleeding (HMB) is a common gynecologic complaint among adolescents. During the first few post-menarcheal years, anovulatory cycles related to immaturity of the hypothalamic-pituitary-ovarian axis are the most common etiology for abnormal uterine bleeding and should be considered as a part of normal pubertal development rather than a disease. If an already regular menstrual cycle becomes irregular, secondary causes of anovulation should be ruled out. Inherited and acquired bleeding disorders, such as von Willebrand disease, and quantitative and qualitative abnormalities of platelets are relatively common findings in adolescents with HMB from menarche. History of excessive bleeding or a diagnosed bleeding disorder in the family supports this etiology, warranting specialized laboratory testing. First-line treatment of HMB among adolescents is medical management with hormonal therapy or nonhormonal options. Levonorgestrel-releasing intrauterine device is an effective tool also for all adolescents with menstrual needs.

Health Care Costs and Treatment Patterns Associated with Uterine Fibroids and Heavy Menstrual Bleeding: A Claims Analysis.

Background: Heavy menstrual bleeding (HMB) is one of the most common distressing complications of uterine fibroids (UF); however, data on the health care costs for treatments in women experiencing HMB associated with UF are lacking. The objective of this study was to compare the direct costs and treatments patterns for women diagnosed with UF+HMB, UF only, and HMB only in the United States. Materials and Methods: The study design was retrospective matched cohort study using claims data. Women, aged 18-51 years, comprising four cohorts (HMB only, UF only, UF+HMB, and controls) were identified in the IBM MarketScan® Commercial Claims and Encounters Database (October 1, 2007‒September 30, 2018) and matched by demographics and Charlson Comorbidity Index score. Baseline characteristics and treatments during the 12 months post-diagnosis were summarized descriptively. Costs (2018 U.S. dollars) during the post-diagnosis year were compared using analysis of variance. Results: Before matching, women with UF+HMB represented 54% of UF cases. Following diagnosis, 32% in the matched UF+HMB cohort had no treatment, 49% underwent surgeries/procedures with (12%) or without (37%) medications, and 18% received medications only. The mean all-cause total costs for UF+HMB ($16,762) exceeded that for UF only by 24% ($13,506) and HMB only by 50% ($11,135), and almost tripled the mean cost for the control cohort ($6,691) (all, p < 0.001). The mean diagnosis-related costs were significantly higher for UF+HMB ($8,741) than for UF only ($4,550) and HMB only ($3,081) (all, p < 0.0001). Surgery/procedure costs comprised 80% of diagnosis-related medical costs for UF+HMB. Conclusions: UF with HMB were associated with significant economic burden, driven primarily by surgical/procedural costs and treatment patterns.