The Pain We Are Told to Endure: Endometriosis in Kenya
Ask almost any Kenyan woman about painful periods and she will likely tell you about hot water bottles, cups of strong ginger tea or the familiar refrain: “Vumilia, ni kawaida ya wanawake” (Endure, it’s normal for women).
Pain that forces a young woman to miss school, take sick leave from work or curl into a ball on the bathroom floor should not be dismissed as something women are expected to endure.
Globally, about 1 in 10 women and girls of reproductive age live with endometriosis that is approximately 190 million people worldwide. It is a chronic inflammatory disease that can cause severe menstrual pain, chronic pelvic pain, pain during sex, bowel or urinary symptoms, fatigue and difficulties with fertility.
In Kenya, the burden is not only medical. Delayed diagnosis, limited access to specialist care, treatment costs, stigma and the normalization of menstrual pain all add to the impact of the disease.
What Is Endometriosis?
Every month, the endometrium, the lining of the uterus, thickens under the influence of ovarian hormones in preparation for a possible pregnancy. If pregnancy does not occur, the lining is shed during menstruation.
In endometriosis, tissue resembling the endometrium is found outside the uterine cavity. It most commonly affects the pelvis but can also occur in other locations.
Endometriosis can involve:
The ovaries, where it can form endometriomas, sometimes called "chocolate cysts"
The fallopian tubes and tissues surrounding the uterus
The lining of the pelvis and abdomen
The bowel
The bladder and ureters
The rectovaginal region
In less common cases, areas outside the pelvis, including the diaphragm and chest
The exact cause of endometriosis remains unknown. It is not simply a case of menstrual blood becoming trapped outside the uterus.
Instead, endometriosis involves complex interactions between hormone responsive endometriosis like tissue, inflammation, immune responses, fibrosis(scarring) and changes in how pain is processed by the nervous system.
Repeated inflammation can contribute to adhesions, bands of scar tissue that can cause pelvic organs to stick to one another.
Recognizing the Clinical Picture
Endometriosis can produce much more than ordinary menstrual cramps.Some of the most characteristic symptoms include the "4 Ds":
Dysmenorrhea — Severe Period Pain
Dyspareunia — Pain During or After Sex
Dysuria — Painful Urination
Dyschezia — Painful Bowel Movements
Beyond the 4 Ds
Patients may also experience:
Chronic pelvic pain
Heavy menstrual bleeding
Abdominal bloating or distension, sometimes referred to as "endo belly"
Chronic fatigue
Nausea
Lower-back or leg pain
Difficulty becoming pregnant
Not every patient experiences all of these symptoms, and the severity of pain does not necessarily correspond to the severity of the disease.
When Is Period Pain Not "Normal"?
Menstrual cramps are common. But pain that repeatedly disrupts normal life deserves medical attention.
A woman should consider seeking medical evaluation if her period pain:
Regularly prevents you from attending school or work
Is getting worse over time
Does not respond adequately to usual pain medication
Is associated with pain during or after sex
Causes pain during bowel movements or urination
Is accompanied by persistent pelvic pain
Is associated with difficulty becoming pregnant
Severe menstrual pain does not automatically mean endometriosis. Conditions such as adenomyosis, fibroids, pelvic inflammatory disease and some ovarian disorders can cause similar symptoms.
Busting the Myths
1: Pregnancy cures endometriosis.
Fact: Pregnancy does not cure endometriosis.Pregnancy and breastfeeding can temporarily suppress ovulation and menstruation, and some women experience an improvement in symptoms during this period. However, this does not mean that the underlying disease has been permanently eliminated.Symptoms can return when regular menstrual cycles resume.
2: A hysterectomy is a permanent cure.
Fact: Removing the uterus(hysterectomy) does not automatically eliminate endometriosis. Endometriosis can exist outside the uterus. Even after hysterectomy, symptoms can persist if disease remains elsewhere.
3: You are too young to have endometriosis.
Fact: Endometriosis can affect adolescents and may begin around the time of menarche (first menstruation). Repeatedly disabling menstrual pain in a teenager deserves proper assessment.
4: Endometriosis means permanent infertility.
Fact: Endometriosis can interfere with fertility, however, many women with endometriosis conceive naturally, while others may require fertility treatment.
5: We Know What Causes Endometriosis.
The truth: We don't. There is currently no definitive, single cause of endometriosis. Researchers have proposed several theories including retrograde menstruation, coelomic metaplasia(tissue transformation), embryonic remnants, and spread through blood or lymphatic vessels to explain how endometrial-like tissue reaches or develops outside the uterus. However, no single theory fully explains all cases, and the disease is likely influenced by a combination of genetic, hormonal and immune factors.
Why Does Diagnosis Take So Long?
One of the most frustrating aspects of endometriosis is the delay between the beginning of symptoms and diagnosis.
The World Health Organization currently estimates that the average time to diagnosis can range from 4 to 12 years.
Why?
Because severe menstrual pain is often normalized.
A teenager may be told that painful periods are simply part of becoming a woman. An adult may repeatedly receive painkillers without further investigation or is misdiagnosed. Pelvic and sexual symptoms can also be difficult for patients to discuss.
In Kenya, these challenges are compounded by the cost of healthcare (especially in uninsured patients), geographical differences in access to specialists, availability of imaging and surgical services, and the financial consequences of repeatedly seeking care.
The result is years of symptoms before the underlying condition is recognized.
How Is Endometriosis Diagnosed?
There is no single routine blood test that can reliably diagnose endometriosis.
Diagnosis begins with a detailed clinical history and examination, followed by appropriate imaging.
Treatment
There is currently no treatment that permanently cures endometriosis. Instead, treatment aims to control pain and other symptoms and improve quality of life.
Treatment is individualized according to symptoms, disease extent, side effects, long-term safety, cost, availability and whether pregnancy is desired.
This includes pain relief, hormonal suppression, surgery and/or pelvic floor physiotherapy.
Where Can You Get Evaluated in Kenya?
If symptoms suggest endometriosis, the first step does not necessarily have to be a specialized endometriosis center. One can begin with a qualified healthcare provider and where necessary, be referred for specialist assessment.
Points of care include:
County referral hospitals
National referral centers, including Kenyatta National Hospital (KNH) and Moi Teaching and Referral Hospital (MTRH)
Specialized gynecological centres - African centre for endometriosis
Patient support and navigation organizations, including Endo Sisters East Africa Foundation
Patients should confirm current services, referral requirements and costs directly with the relevant facility because availability can change.
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Disclaimer: This article is for general educational purposes and does not replace professional medical advice, diagnosis, or treatment. If you have persistent or severe symptoms, please consult a qualified healthcare professional.
Sources
Zondervan KT, Becker CM, Missmer SA. Endometriosis. N Engl J Med. 2020;382(13):1244–1256.
Kyama CM, Mihalyi A, Simsa P, Mwenda JM, D'Hooghe TM. Non-human primate models for understanding the pathophysiology of endometriosis. Front Biosci (Elite Ed). 2011;3:967–979.
World Health Organization. Endometriosis. Updated 15 October 2025.
Endo Sisters East Africa Foundation. Menstrual Disorders and Advocacy for Endometriosis Inclusion in Kenya’s Health Agenda. Nairobi; 2024.
Ministry of Health, Republic of Kenya. Clinical Guidelines for Management and Referral of Common Conditions at Primary Care Levels. Nairobi: RMHSU; 2018.
Becker CM, Bokor A, Heikinheimo O, et al. ESHRE guideline: endometriosis. Hum Reprod Open. 2022;2022(2):hoac009.
American College of Obstetricians and Gynecologists. Clinical Consensus No. 4: Endometriosis in Adolescents. Obstet Gynecol. 2023;142(5):1253–1262.
Cover Image courtesy of Aunt Flow.