What is Endometriosis? Why should you care?

Definition: Endometriosis is a women’s condition 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 and infertility. It is clinically described as a chronic illness but not a terminal illness – where life threatening complications have not set in.


The exact cause of endometriosis isn’t known, and there are several theories regarding the cause, although no one theory has been scientifically proven. However, one of the  oldest theory is that Endometriosis is caused by retrograde menstruation, in which fragments of menstrual endometrium are refluxed through the fallopian tubes into the peritoneal cavity (Sampson, 1927).

A second theory is that hormones transform the cells outside the uterus into cells similar to those lining the inside of the uterus, known as endometrial cells.

A third theory is that the endometrial cells are transported out of the uterus through the lymphatic system. Still another theory purports it may be due to a faulty immune system that isn’t destroying errant endometrial cells.

Some believe endometriosis might start in the fetal period with misplaced cell tissue that begins to respond to the hormones of puberty. This is often called Mullerian theory. The development of endometriosis might also be linked to genetics or even environmental toxins

Others believe the condition may occur if small areas of your abdomen convert into endometrial tissue. This may happen because cells in your abdomen grow from embryonic cells, which can change shape and act like endometrial cells. It’s not known why this occurs.

It’s also possible for the menstrual blood to leak into the pelvic cavity through a surgical scar, e.g C-section.

Symptoms: Classic endometriosis symptoms include; Painful, heavy, prolonged or irregular periods, pain during or after sex, infertility, painful bowel movements and fatigue.

Stages: There are four stages of endometriosis. These are: minimal, mild, moderate and severe. However, there is no direct correlation between the level of pain and the stage one is in. This means that one can have mild endometriosis with extreme pain.

Diagnosis: The only definitive way to diagnose endometriosis is by a laparoscopy – an operation in which a camera (a laparoscope) is inserted into the pelvis via a small cut near the navel. It is important that proper diagnosis is done since symptoms of endometriosis can be similar to and confused with symptoms of other conditions, such as pelvic inflammatory diseaseovarian cysts among others. Most women do not know about endometriosis until they are diagnosed through laparoscopy and this is usually initiated when the disease has spread widely in the reproductive system. The challenge is that laparoscopy surgery is very expensive and out of the reach of the majority of affected Kenyan women

Prevalence: Endometriosis affects 10% of women in the reproductive-age group (Eskenazi and Warner, 1997). This incidence increases up to 30% in patients with infertility (Italiano, 1994).


Impact of endometriosis on women’s lives: Endometriosis has a negative impact on marital/sexual relationships, social life, and on physical and psychological aspects in all the affected women. Other major impacts are on 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).

Association between endometriosis and cancer: The risk for cancer among women with endometriosis is elevated by 90% for ovarian cancer, 40% for hematopoietic cancer (primarily non-Hodgkin’s lymphoma), and 30% for breast cancer. Having a longer history of endometriosis and being diagnosed at a young age are both associated with increased cancer risk (Brinton et al 1997). Dr. Louise Brinton, Chief of the Hormonal and Reproductive Epidemiology branch at the National Cancer Institute, USA suggests that if endometriosis does increase the risk for ovarian cancer, then treating it might reduce this risk. Thus removing endometriosis should theoretically reduce the risk for cancer.

Endometriosis in Adolescents 

Adolescence is the transitional years of growth from puberty to adulthood and is an exciting though emotionally and stressful time marked with a lot of physical, psychological and social changes. Most girls look forward to this transformational period in their lives, but sadly a number end up being traumatized by how painful the puberty process is. Indeed, it is true that not every girl will find this process physically painful, but one cannot understate the importance of psychologically preparing girls for this transitional time in their lives so that they are better placed to take responsibility for their health. The genesis of women empowerment begins by empowering young girls to understand the changes going on in their bodies, question, and raise concerns when they discern that something may be wrong without fear of shame or condemnation.

While there are no universally accepted definitions of adolescence and youth, the United Nations understands adolescents to include persons aged 10-19 years and youth as those between 15- 24 years. For purposes of this article, we will collectively refer to adolescents as those between the ages of 10-24 years.

Menstrual Cramps

Menstruation is said to begin from 10 years of age with some girls starting their periods as early as 9 years old. During this time, it is possible that girls experience menstrual pain or dysmenorrhea. Dysmenorrhea according to the online medical dictionary is defined as the occurrence of painful cramps during menstruation.  Dysmenorrhea can either be classified as primary or secondary. Primary dysmenorrhea occurs in the absence of any pelvic medical condition. The medical dictionary further states that in the first year or so of a girl’s periods, they are not usually very painful. However, once ovulation begins, the blood levels of prostaglandins rise, leading to stronger contractions and this is what is described as primary dysmenorrhea. Symptoms include cramping in the lower abdomen, nausea and vomiting, diarrhea, irritability, sweating or dizziness.

The medical dictionary details that Secondary dysmenorrhea is when the pain is caused by an underlying gynecological disorder or condition. Examples of such conditions are endometriosis, fibroid tumors, pelvic infection, adenomyosis and others. Secondary dysmenorrhea is managed by treating the underlying disorder and that is why it is so important to establish whether the cause of pain for the adolescent is as a result of primary or secondary dysmenorrhea. Specifically, Endometriosis has been found to be the most common cause of secondary dysmenorrhea amongst the adolescent population[i].

Understanding Endometriosis

Endometriosis is a highly damaging disease of the female reproductive system[ii]. It occurs when the endometrial cells implants in areas outside of the uterus. When a woman has endometriosis, tissue that looks and acts like the lining of the uterus starts growing in places besides the inside of the uterus.  The most common locations for these growths or implants are the outside surface of the uterus, fallopian tubes, ovaries, intestines, bladder and pelvic cavity.[iii]. As a result, implants become inflamed resulting in symptoms.

Approximately one in ten women and 176 million women worldwide live with endometriosis. Endometriosis can cause daily pelvic pain, painful periods, and pain during bowel movements or sex[iv]. The challenge however is that Endometriosis symptoms can mimic those of other diseases, often leading to multiple misdiagnoses.  

How do I help my teen/adolescent get diagnosed?

Endometriosis is not always diagnosed right away in teens because their doctors assume that their painful periods are a normal part of menstruating, or that their abdominal pain is due to another problem. However, excessive pain that limits activity isn’t normal and should always be taken seriously. The Endometriosis Foundation of America’s awareness campaign states that “Killer cramps” that result in girls missing multiple days of school, sports and social activities during and around the time of her period[v] are not normal. So, the first step is to take your daughter to a visit to the gynecologist once she starts menstruating particularly if she is complaining of pain. In addition to doing a physical exam, the doctor will take her medical history by asking her about any concerns and symptoms she has. It is important to have kept a pain and symptoms diary that details what she experienced at different times during her cycle so that it can inform the doctor’s course of action.

Diagnosis and Treatment options

Unfortunately, Laparoscopic surgery is the only sure way to determine if one has endometriosis though there are other methods such as ultra sound examination used for trying to diagnose endometriosis. There is no cure for endometriosis, but there are treatments available to manage the disease.  Treatment options include pain killers for mild pain, hormone treatment (mostly in the form of birth control pills), Laparoscopic excision surgery (the best choice for extensive endometriosis), diet management, exercise and other alternative therapies[vi]. Emotional support for those struggling with endometriosis can be obtained at the following link https://www.facebook.com/endosisterseastafrica/

 Endometriosis and Fertility

While we do not have data on endometriosis in East Africa, Endometriosis is the third leading cause of gynecologic hospitalization in the United States and impacts both a woman’s physical and mental well-being[vii]. Studies show that 30-50% of women who have endometriosis may experience some infertility[viii].  This is because endometriosis can impair or block the fallopian tubes and decrease ovarian reserve, impending pregnancy. Endometriosis can also inflame the pelvic structures making it harder for fertilized eggs to implant. The extent of endometriosis will determine on how much it affects fertility. Endometriosis is an estrogen dependent disease, so the reduction of estrogen during pregnancy can alleviate the symptoms until the pregnancy and/or breastfeeding are concluded and then it resurfaces. More severe stages of endometriosis may impede pregnancy and require IVF treatment to become pregnant.

Who is at Risk?

Girls whose mothers or close family members have endometriosis are 5-7 times more likely to have endometriosis[ix].  The good news is that early treatment reduces chances of infertility[x] which is important since there is no cure for endometriosis[xi]. For best results, it is recommended that the diagnosis period of the disease does not extend beyond 5 years. This is for better management of the disease and for quality of life enhancement for afflicted women.


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Lynn Sterling, Luc van Lonkhuijzen,  JobNyangena, ElkanahOrango, Matthew Strother, NafthaliBusakhala and Barry Rosen. Protocol Development for Ovarian Cancer Treatment in Kenya. International Journal of Gynecological Cancer, 2011, DOI:10.1097/IGC.0b013e3182060316

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

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[i] Laufer MR, Goitein L, Bush M, Cramer DW, Emans SJ. Prevalence of endometriosis in adolescent girls with chronic pelvic pain not responding to conventional therapy. J Pediatr Adolesc Gynecol 1997;10:199–202.

[ii] Cramer, D., & Missmer, S. The Epidemiology of Endometriosis. Annals New York Academy of Sciences.

[iii] Patient Fact Sheet: Managing Pelvic Pain. (2008). Retrieved July 10, 2014, from http://www.asrm.org

[iv] Patient Fact Sheet: Managing Pelvic Pain. (2008). Retrieved July 10, 2014, from http://www.asrm.org

[v]Nurse Conference 2013 – Monique Regard, MD – Video Gallery – Endometriosis Foundation of America. (n.d.). Endofound. Retrieved July 10, 2014, from http://www.endofound.org/video/Nurse-Conference-2013-Monique-Regard-MD-/408  

[vi] Mcleod, B., & Retzloff, M. Epidemiology of Endometriosis: An Assessment of Risk Factors. Clinical Obstetrics and Gynecology, 53.2, 389-396

[vii] Mcleod, B., & Retzloff, M. Epidemiology of Endometriosis: An Assessment of Risk Factors. Clinical Obstetrics and Gynecology, 53.2, 389-396

[viii] Endometriosis: Does it Cause Infertility? (2008). Retrieved July 10, 2014, from http://www.asrm.org

[ix] Patient Fact Sheet: Managing Pelvic Pain. (2008). Retrieved July 10, 2014, from http://www.asrm.org

[x] Endometriosis: A Guide for Patients. (2008). Retrieved July 10, 2014, from http://www.asrm.org

[xi] Endometriosis. Retrieved July 10, 2014, from http://www.endofound.org/