Women, Girls, and People who had or have the Potential to Menstruate (WGPPM)* with Bleeding Disorders

At VHF we care about women, girls, and people who had or have the potential to menstruate (WGPPM)* with bleeding disorders. Our mission is to serve and support the needs of WGPPM with bleeding disorders through empowerment, community, advocacy, resources, and education.

If you (or someone you know/care for) are looking for a bleeding disorders risk self-assessment tool** go here to take the Better You Know survey developed by the National Bleeding Disorders Foundation (NBDF). This survey will help to determine if you (or someone you know/care for) are maybe at risk for a bleeding disorder or for more information on signs and symptoms download this brochure “Could I Have a Bleeding Disorder?” from the Foundation for Women & Girls with Blood Disorders ( FWGBD.)

What to do if you have signs or symptoms of a bleeding disorder

If you have signs and symptoms of a bleeding disorder, please talk with a health care professional. Bleeding disorders can be dangerous if they are not treated. WPGGM with untreated bleeding disorders face serious risks after childbirth, dental surgery, other surgery, or injury.

Many WPGGM start by seeing one of the health care professionals listed below. Depending on your health insurance coverage, you may need a referral, if you have questions contact your insurance plan for specifics and/or go here to learn more about navigating the healthcare system.

Hematologist A hematologist is a physician who treats diseases and disorders of the blood. Many hematologists who specialize specifically in bleeding disorders work at Hemophilia Treatment Centers (HTCs). To find an HTC that offers specific services for WPGGM with bleeding disorders go here.

HTCs in Virginia with specific programs for WPGGM

Children’s Hospital of the King’s Daughters (CHKD) Menorrhagia Program, Multidisciplinary Clinic of Adolescent Gynecology and Hematology at CHKD. New patients must be under 18, if 18-21 they can be referred for a bleeding disorder work up, but Gynecology doesn’t take new adult patients. For patients with diagnosed bleeding disorders having issues related to menorrhagia and are interested in hormonal management. Patients with thrombophilia /sickle cell/ long term anti-coagulation therapy with heavy periods. Patients with menorrhagia whose PCP or GYN is concerned may have a bleeding disorder. Patients who end up in the ED/admitted for severe iron deficiency anemia related to heavy periods. Clinic Phone Number: 757-668-7243

University of Virginia ABCD clinic (Adolescents with Bleeding and Clotting Disorders) Multidisciplinary Clinic of Adolescent Gynecology and Hematology. For anyone under the age of 18 years old with concern for heavy bleeding and/or anemia resulting from menstrual bleeding (as well as possible other factors). Also, anyone under 18 years of age who desires hormonal therapy but has a history of blood clots or family history of blood clots. Clinic Phone Number: 434-924-8499

OB/GYN (obstetrician/gynecologist) focus on women’s reproductive and sexual health and are a good source of information around symptoms such as heavy periods.

Primary Care Physician/Pediatrician A PCP (primary care physician) provides preventive care and basic diagnoses of common illnesses and medical conditions. For children and teens, the equivalent would be a pediatrician.

Healthcare providers and/or student health services on campus If you are currently enrolled in college/university most campuses have a health center that can assist you in determining options.

Community resources and education

Once you have determined that you may have signs and symptoms of a bleeding disorder, setting up an appointment with a health care provider, getting prepared for your first appointment, and finding community resources can help you feel more comfortable and assist you in receiving the proper diagnosis. Here are some resources to help get you started.

Centers for Disease Control and Prevention (CDC) – Bleeding Disorders in Women

Foundation for Women and Girls with Blood Disorders (FWGBD)

Hemophilia Federation of America (HFA) – Blood Sisterhood

HFA Blood Sisterhood – Resource List

HFA – Menstruation Tracking Tools

HFA & FWGBD – A Resource About Women with Bleeding Disorders for You to Share with Your Provider

Hemophilia of Georgia (HoG) – The Hemophilia, von Willebrand Disease, & Platelet Disorders Handbook

FWGBD & HoG – For Girls with Bleeding Disorders: What to Expect During Your First Gynecological Exam

Para niñas con trastornos hemorrágicos (sangrado): ¿Qué esperar durante tu primer examen ginecológico?

FWGBD & HoG – Managing Your Bleeding Disorder: Before, During, and After Pregnancy

Let’s Talk Period – Website that aims to increase awareness of the signs and symptoms of bleeding disorders 

National Heart, Lung, and Blood Institute – Your Guide to von Willebrand Disease

NBDF Better You Know – How to Prepare

NBDF Better You Know – Healthcare Diary

NBDF Better You Know – Your Guide to Lab Tests, Screening Tools and Health Exams 

NBDF Better You Know – Lab Test Log

NBDF Better You Know – What’s A Normal Period

NBDF Victory for Women

NBDF Steps For Living: Girls

Office on Women’s Health (OASH) – Bleeding Disorders

Ready.Set.Flow  – What’s A Normal Period

*VHF is following the lead of the National Bleeding Disorders Foundation (NBDF) who uses the term Women, Girls, and People who have or had the Potential to Menstruate (WGPPM) to be inclusive of the needs and experiences of gender diverse people who were assigned female at birth, and those who now identify as a woman or a girl. While the term WGPPM is framed around menstruation, not all currently menstruate. Regardless of gender identity, some people have had hysterectomies, others have their periods suppressed or ended from hormone therapy, and others have gone through menopause. It is the “potential” that is the unifying element in this term, as some may never have started their periods in the first place. In addition, NBDF acknowledges that bleeding for WGPPM is not just about heavy menstrual bleeding. Addressing other types of bleeding is critical for overall improved health outcomes.

**Please note the risk assessment tools are in no way a substitute for a diagnosis from a qualified medical provider, and the information on this site is provided for your general information only (please see NBDF’s full Medical Disclaimer.)

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