I was recently contacted by someone from the US Centers for Disease Control and Prevention (CDC) in relation to a previous blog post - Menstrual blood loss- what's normal?
They are launching a much-needed awareness-raising campaign in partnership with the US National Hemophilia Foundation called 'Better you know'. The campaign is focused on those who may experience symptoms of a bleeding disorder but have not been diagnosed, especially people who menstruate.
The campaign website has a risk assessment tool, brochures, booklets, and videos for individuals to learn whether they are at risk and the next steps to take to seek care. If you suspect you might have a bleeding disorder, your life can be better if you seek care and get treatment. It is better you know.
Website: https://betteryouknow.org/[Note: The UK NICE guidelines on Heavy Menstrual Bleeding have just been updated!]
Check them out here: https://www.nice.org.uk/guidance/qs47
The term covers conditions that prevent the blood from clotting normally, causing prolonged bleeding after menstruation, injury, surgery, or physical trauma. Von Willebrand disease (VWD) is the most common bleeding disorder affecting people who menstruate.
Research shows that female (especially Black and other racialized ethnic minority) patients are more likely to be dismissed by their healthcare practitioner without proper examination . Menstrual health issues also tend to be normalised  resulting in the systematic under-diagnosis of serious and debilitating disorders!
Check out just how long it took these women to get diagnosed...
Heavy Menstrual Bleeding may be a symptom of a bleeding disorder.
Other symptoms include:
- Heavy bleeding after childbirth or miscarriage, or after any surgery including dental surgery
- Bleeding from cuts or injuries, or spontaneous nosebleeds, that last longer than 10 minutes
- Bruising easily, with bruises that are raised and larger than a quarter/ 50 pence piece
- Having someone in your family who has one or more of these symptoms, or has been diagnosed with a bleeding disorder, such as von Willebrand disease (VWD) or haemophilia.
Even if these symptoms seem normal because they "run in the family"!
Getting the medical help you need can really improve your quality of life and reduce stress. Bleeding problems can be prevented or controlled with treatment. If you have symptoms of a bleeding disorder, please talk to your doctor (and show them this blog if they don't believe you!).
Some 'Better You Know' Resources:
- BYK Doctor Visit Preparation
- BYK Healthcare Diary
- BYK Lab Test Log
- BYK Menstrual Chart Log & Scoring System
- BYK Teen Girls Brochure
- BYK What You Should Know: Your Guide to Lab Tests, Screening Tools & Health Exams
- For General Practitioners: Bleeding Disorders in Women & Girls: Screening, Testing, & Coordinating Care
- For OB/GYNs: Bleeding Disorders in Women & Girls: Screening, Testing, & Coordinating Care
- Bleeding Disorders in Women
- Bleeding Disorders in Women: Free Materials about Signs and Symptoms
- Bleeding Disorders in Women: Free Materials When Seeking Care
- Provider Education and Training on Bleeding Disorders in Women
References: There are several studies on this- here are some good ones...
Female patients in general:
Hoffmann, D. E., & Tarzian, A. J. (2001). The Girl Who Cried Pain: A Bias against Women in the Treatment of Pain. The Journal of Law, Medicine & Ethics, 28(4_suppl), 13–27. https://doi.org/10.1111/j.1748-720X.2001.tb00037.x
Letson, S. and Dancey, C. P. (1996) ‘Nurses’ perceptions of irritable bowel syndrome (IBS) and sufferers of IBS.’, Journal of advanced nursing, 23(5), pp. 969–974. https://doi.org/10.1046/j.1365-2648.1996.10416.x
Asbring, P. and Närvänen, A. (2002) ‘Women’s experiences of stigma in relation to chronic fatigue syndrome and fibromyalgia.’, Qualitative health research, 12(2), pp. 148–160. https://doi.org/10.1177/104973230201200202
Black and other racialized patients:
Goodman, A., Fleming, K., Markwick, N., Morrison, T., Lagimodiere, L., Kerr, T., & Society, W. A. H. R. (2017). “They treated me like crap and I know it was because I was Native”: The healthcare experiences of Aboriginal peoples living in Vancouver's inner city. Social Science & Medicine, 178, 87-94.
Paradies, Y., Truong, M. & Priest, N. A Systematic Review of the Extent and Measurement of Healthcare Provider Racism. J GEN INTERN MED 29, 364–387 (2014). https://doi.org/10.1007/s11606-013-2583-1
Williams DR, Lawrence JA, Davis BA. Racism and Health: Evidence and Needed Research. Annu Rev Public Health. 2019 Apr 1;40:105-125. doi: 10.1146/annurev-publhealth-040218-043750. Epub 2019 Feb 2. PMID: 30601726; PMCID: PMC6532402. Some relevant references:
Gibson-Helm M, Teede H, Dunaif A, Dokras A. Delayed Diagnosis and a Lack of Information Associated With Dissatisfaction in Women With Polycystic Ovary Syndrome. J Clin Endocrinol Metab. 2017 Feb 1;102(2):604-612. doi: 10.1210/jc.2016-2963. PMID: 27906550; PMCID: PMC6283441.
Chrisler JC, Gorman JA, Marván ML, Johnston-Robledo I. Ambivalent sexism and attitudes toward women in different stages of reproductive life: a semantic, cross-cultural approach. Health Care Women Int. 2014;35(6):634-57. doi: 10.1080/07399332.2012.740113. Epub 2013 Apr 29. PMID: 23627400.
All other content and claims are from 'Better you know' campaign materials.