The ECHO Project
The Endometriosis Campaign for Health and Outreach Project ECHOing Strength: Amplifying Endometriosis Awareness
overview
The ECHO Project supports women suffering from endometriosis through research, education, and support group sessions. These group sessions provide a safe space for women to share their experiences and receive guidance from medical professionals. The ECHO Project collaborates with providers to create a comprehensive directory of endometriosis specialists in Ghana. We also connect women with ongoing clinical trials to explore new research and treatments to advance the understanding of endometriosis. Our goal is to support and raise awareness about endometriosis, helping women manage the condition and improve their quality of life.
achievements
Collecting and curating data for a national database of endometriosis specialists in Ghana.
Curating a global database of endometriosis clinical trials to improve access to research opportunities for patients and caregivers.
FREQUENTLY ASKED QUESTIONS ABOUT ENDOMETRIOSIS
Most people who are remotely familiar with endometriosis, think endometriosis is simply a ‘menstruation disease’, but that would be akin to saying labor and childbirth is like constipation.
Endometriosis is more than a ‘menstruation disease’. Endometriosis is a condition where tissue similar to the lining inside the uterus, known as the endometrium, starts to grow outside the uterus. This tissue can be found on the ovaries, fallopian tubes, and other areas within the pelvis. On rare instances, it can extend beyond the pelvic organs into the kidneys, lungs, diaphragm or brain.
These out-of-place endometrial growths or implants are what is referred to as endometriosis. Endometriosis is affected by hormones (estrogen and progesterone) just as many other tissues in our bodies are. This means during your cycle, when estrogen increases, these endometrial tissues will grow. This often causes severe physical pain which can be quite distressing.
The primary symptom of endometriosis is pelvic pain, often associated with menstrual periods. As endometriosis grows, it can cause inflammation, which can lead to other common symptoms to include:
- Painful periods (dysmenorrhea): Severe pelvic pain and cramping that may start before and continue several days into your period.
- Pain during intercourse: Pain during or after sex.
- Pain with bowel movements or urination: Especially severe during menstrual periods.
- Excessive bleeding: Heavy menstrual periods or bleeding between periods.
- Infertility: Endometriosis is often diagnosed in those seeking treatment for infertility.
- Other symptoms: Fatigue, diarrhea, constipation, bloating, and nausea, especially during menstrual periods
The exact cause of endometriosis is unknown. Possible explanations include:
- Retrograde menstruation: Menstrual blood flows backward into the fallopian tubes and pelvic cavity, causing endometrial cells to stick and grow outside the uterus.
- Embryonic cell transformation: Hormones such as estrogen may transform dormant embryonic precursor cells into endometrial-like cell implants during puberty when estrogen levels increase and menstruation begins. This is referred to as the Müllerian remnant theory.
- Surgical scars: After surgeries such as hysterectomy or C-section, the endometrial cells may attach to the surgical incision.
- Immune system disorders: Issues with the immune system may make the body unable to recognize and destroy endometrial-like tissue growing outside the uterus. More research is necessary to fully understand these immune and clearance systems and how the body’s inflammatory response contributes to endometriosis.
Diagnosing endometriosis can be challenging and often involves:
- Laboratory testing: There is no blood, urine or saliva test for endometriosis. Scientific studies are being conducted using circulating miRNAs, anti-Mullerian hormone (AMH), CA-125, cytokines, growth factors, BCL-6, other inflammatory markers, genomics, and epigenomics to test for endometriosis in labs, but more research is needed.
- Imaging tests: Contrary to popular belief, endometriosis cannot be definitively detected using computed tomography (CT), magnetic resonance imaging (MRI), or ultrasounds. Although these imaging tests, along with pelvic and rectovaginal exams, can suggest the presence of ovarian and deep endometriosis, they cannot confirm it. Nonetheless, obtaining a pelvic ultrasound and MRI before laparoscopic surgery is standard practice, as they assist in planning the surgical approach.
- Laparoscopy: A surgical procedure where a doctor looks inside your abdomen to identify and potentially remove endometrial tissue. This is the only way so far to verify pelvic endometriosis. A tiny incision will be made in the patient’s abdomen, and samples of the tissue in question will be removed and sent to a lab to be viewed under a microscope to confirm it is endometriosis.
While there is no cure for endometriosis, several treatments can help manage symptoms:
- Pain relief: Over-the-counter pain medications like non-steroidal anti-inflammatory drugs (NSAIDs).
- Hormone therapy: Low-dose oral contraceptives, hormonal intra-uterine device (instead of copper), Gn-RH agonists and antagonists, and progestin therapy.
- Surgery: To remove endometrial growths.
- Fertility treatment: For those struggling with infertility, options include in vitro fertilization (IVF)
Endometriosis affects approximately 10% of women and those assigned female at birth of reproductive age globally, which equates to around 176 million people worldwide. Recent studies have highlighted its significant presence in sub-Saharan Africa, including Ghana. For instance, a 2015 study in Nigeria found that over 48% of women analyzed had endometriosis lesions. In Ghana, specific case studies have also identified instances of thoracic endometriosis. Despite its prevalence, many cases remain undiagnosed due to limited awareness and inadequate healthcare infrastructure, leaving many women without proper treatment and support.
Yes, endometriosis can affect fertility. Between 30-50% of women with endometriosis may experience difficulties conceiving. The condition can distort the anatomy of the pelvis, cause inflammation, and alter hormonal environments, all of which can impact fertility.
If you experience any symptoms of endometriosis, such as severe pelvic pain, pain during periods, or issues with fertility, it is crucial to consult a healthcare provider. Early diagnosis and a multi-disciplinary treatment approach can help manage symptoms more effectively and improve quality of life.
References
1. Endometriosis Definition, Stages, Symptoms, Causes, Diagnosis, and Treatment, Seckin Endometriosis Center
2. Seckin, T., The Doctor Will See You Now: Recognizing and Treating Endometriosis. 2016.
3. https://www.borgenmagazine.com/endometriosis-in-sub-saharan-africa/