by Doris Murimi (CEO, Endo Sisters EA Foundation & Author, “When Something is Wrong – Understanding Menstrual Disorders”)
The Priority list of Indicators for Girls’ Menstrual health and Hygiene, a technical guidance for National monitoring, removes a critical barrier in the progression of MHH monitoring and measurement by countries and is therefore a celebrated guideline. In my view, it is also a game changer for the almost overlooked yet critical MHH Domain, discomforts and disorders, which has finally been publicly acknowledged. Nevertheless, there is still a long way to go as there are hardly any comprehensive menstrual health education programs which incorporate menstrual disorders education for the appropriate age group of 12 years and above, which in my view, is unfortunate. However, one of the comprehensive menstrual health programs that I have come across is the Period Education Project (P.E.P) educative workshop covering the following topics: the Female Anatomy; The Menstrual Cycle; Menstrual & Health Tracking; Normal & Abnormal Menses; Safe & Reliable Options for Period Management; Stigma Reducing Myth Busting; Local resources providing free period products; and trusted resources for additional menstrual health information.
For purposes of clarity, menstrual disorders education clearly differentiates between what is normal menses and what is abnormal menses. If there are abnormal symptoms before or during menses, a girl may have a menstrual cycle ‘disorder’, commonly referred to as a menstrual disorder. There are four types of menstrual disorders, which are: Premenstrual Syndrome (PMS), Amenorrhea, Dysmenorrhea and Abnormal Uterine Bleeding (AUB). From an African cultural context, those with dysmenorrhea, are seen as not having the capacity to withstand pain. Those with abnormal uterine bleeding, are deemed to be cursed or dirty for heavy bleeding. There is also the suspicion by some in other quarters, that the heavy bleeding is a consequence of induced abortion. PMDD is not even considered as an illness and many girls and women particularly with conditions such as endometriosis, have to contend with PMDD in addition to their physical pain and discomfort. Amenorrhea which is either the delay in starting menses or a case of absent menses, is never even addressed as an issue. Basically, it is a non-issue, as if such instances are non-existent. Indeed, it is traumatic for those girls failing to attain menstruation when the rest of their peers have attained this milestone.
The review of the menstrual disorders education content in Kenya has revealed that it is suited for adolescents who are 12 years and above. I would add that it is best for those who would have undergone a foundational menstrual health program at ages 9 to 11 years. The benefit of menstrual disorders education is that it helps reduce stigma associated with menstruation. Secondly, for mental well-being, it provides answers to questions posed by affected girls. Most important of all, menstrual disorders knowledge educates, equips and empowers girls to self-advocate based on symptoms they may be experiencing now, with the hope of obtaining an early diagnosis and preventing a life plagued by sickness, unproductivity and poor quality of life in the future.
Governments have an implied duty of care towards learners and must ensure that the learners are provided with the requisite information for their general well-being, inclusive of comprehensive menstrual health. First of all, we have fallen short in empowering our girls on self-advocacy, by withholding critical menstrual disorders education that could potentially help them obtain an early diagnosis and improve their quality of life. This is evidenced by the available MHH guidelines which simply contain a sentence or two at most under the vague heading, PAIN and advise girls to seek medical assistance if the pain impacts their daily routine. Indeed, I do appreciate that this level of information is quite suitable for the 9 to 11 years age group. However, we continue to use the same information for those 12 years and above and therein lies the problem.
Secondly, we should avoid callous and unprecise language as it only serves to confuse adolescent girls. I ran a support group of women living with endometriosis and adenomyosis in Kenya. The statement, “Menstruation is not Sickness” has been responsible for delayed diagnosis for all us. One can imagine how difficult it is for an adolescent girl to risk being ridiculed by admitting that her menses make her sick. A simple qualification of this statement would help erase this confusion. “Menstruation is a normal process in the life of every woman. However, there are instances where it can present with abnormal symptoms”. Describing it in this manner, and further explaining the types of menstrual disorders, as well as highlighting some of the associated medical conditions that can be evidence of the disorders, helps a girl feel informed and validated particularly if she is among the bracket that experiences a menstrual disorder. She is able to confidently attribute her pain to the disorder and not because she is ‘weak’. She is also not ashamed that she will receive judgement on her hygiene practice during her menses when they are heavy, and may leak or produce an odour. With this knowledge, she has the courage to tell somebody what she is experiencing and consult a doctor.
Girls who experience abnormal symptoms with their menses, are well aware that they do not conform to the ‘normal’ reality, and feel intense shame and judgement, and this results in stigma. Self-stigmatization has been an unaddressed aspect of stigma as MHH programs tend to focus on external stigma. The end result is that by not being explicit about abnormal menses and by extension, menstrual disorders, a veil of shame is created around abnormal menstruation. Consequently, girls are unable to raise their concerns and talk about their true experiences as no safe space exist for these types of discussions.
From my standpoint, I think that failing to incorporate menstrual disorders education (with age-appropriate considerations) at the policy level has the following consequences:
It propagates the wrong assumption that menstruation presents normally for all girls and women. It is a well-known medical fact that many girls and women who experience menstruation have abnormal symptoms which require medical attention;
It creates the false notion that the only menstruation challenges for school girls are affordability and accessibility of menstrual products as well as disposal/sanitation concerns. It completely disregards the health burden of delayed diagnosis and reduced quality of life for girls experiencing menstrual disorders as challenges;
It closes the door to adolescent girls obtaining early diagnosis and treatments which would help mitigate long term chronic conditions such as severe endometriosis, adenomyosis, premenstrual dysphoric disorder (PMDD), clotting abnormalities and infertility in their working and adult life;
It denies the affected girls and women the opportunity of having policy designed interventions to help them cope with the challenges of living with these menstrual disorders and conditions;
It fuels traditional taboos and myths ‘thinking’, it increases stigma for those girls and women who are deemed to be different simply because they suffer from menstrual disorders and conditions that many may not know of or understand due to unawareness.
This stigma can only be addressed by having discussions in schools at the appropriate age to avoid millions of women suffering in silence for years with undiagnosed menstrual disorders. This education is also relevant for boys, men, parents, guardians and care givers in order to furnish them with the requisite knowledge to provide an effective support system for their peers, friends, sisters, daughters, others, who may be experiencing menstrual disorders. Indeed, menstrual disorders education will go a long way in helping to dispel stigma within communities and society in general on menstruation.
In conclusion, by way of example, Endometriosis, is a women’s disorder where tissue similar to the lining of the uterus is found elsewhere in the body, mainly in the abdominal cavity thus causing chronic pelvic pain, heavy bleeding, irregular menstrual cycle among other symptoms. Endometriosis has a delayed diagnosis period of between 7 to 10 years. Research studies demonstrate that:
- Endometriosis affects 10% of women in the reproductive-age group (Eskenazi and Warner, 1997).
- This incidence increases up to 30% – 50% in patients with infertility (Italiano, 1994).
- It impacts education for young women aged between 16–24 years, life opportunities and employment for women between 25–34 years while those aged 35 years and above face negative financial impact (Moradi et al.,2014).
- The economic burden of this disease is also high and similar to other chronic diseases such as diabetes, Crohn’s disease and rheumatoid arthritis (Simeons et al., 2012).
- Girls whose mothers or close family members have endometriosis are said to be 5-7 times more likely to have endometriosis (2008).
From the above, we can see that Endometriosis causes not only physical pain and discomfort, but also disrupts the social, mental, academic and professional lives of girls and women in a very profound way. Note that these are just statistics of Endometriosis and this article has not even addressed other medical conditions that stem from menstrual disorders.
From the foregoing, it is apparent that the time has come for age-appropriate menstrual disorders education to be explicitly incorporated in MHH Programming, by having it taught in schools.
References
Eskenazi B, Warner ML: Epidemiology of endometriosis. Obstet Gynecol Clin North Am 1997, 24:235-358.
Menstrual-disorders. Retrieved September 7th, 2022, fromhttps://www.healthywomen.org/condition/menstrual-disorders
Gruppo Italiano: Prevalence and anatomical distribution of endometriosis in women with selected gynecological conditions: results from a multicentric Italian Study. Gruppo italiano per lo studio dell’endometriosi. Hum Reprod 1994, 9:1158-1162.
Maryam Moradi, Melissa Parker, Anne Sneddon, Violeta Lopez and David Ellwood. Impact of endometriosis on women’s lives: a qualitative study BMC Women’s Health 2014, 14:123
Patient Fact Sheet: Managing Pelvic Pain. (2008). Retrieved July 10, 2014, from http://www.asrm.org
Period Education Workshop. Retrieved September 6th, 2022, from https://periodeducationproject.org/community-events/
Priority List of Indicators for Girls’ Menstrual Health and Hygiene: Technical Guidance for National Monitoring. (2022). Global MHH Monitoring Group. Columbia University. New York.
Simoens S, Dunselman G, Dirksen C, Hummelshoj L, Bokor A, Brandes I, D’Hooghe T: The burden of endometriosis: costs and quality of life of women with endometriosis and treated in referral centres. Hum Reprod 2012, 27(5):1292–1299.
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