Endometriosis: What it is, what happens and who is at risk

“I have led a life of depression and unexplainable pain, both physical and emotional. It all began in 1996 when I was thirteen. The experience was nothing close to what I anticipated. I hate remembering how bad it was. My monthly flow was characterized by excruciating pain to a point of passing out, vomiting and having diarrhoea. I knew there was something abnormal about me since my peers were just fine. My mother, who was a general medical practitioner could not really understand my case and so she gave me contraceptives to regulate my periods and make them less painful. No drug could take the pain away. At school, I wasted away in the sickbay for many days. They termed me a drama queen and a pretender; little known to them was my journey through the tortures of hell. When I turned 19, I went to visit my father in Nigeria. That is when all hell broke loose. I no longer had access to drugs that would ease the period pain and I couldn’t take the ache anymore. I collapsed in my father's house, right in front of him. When  I regained consciousness, I started vomiting and my father thought that I was pregnant. He started yelling at me using unkind words. It took me all I had not to scream from the sharp pain in my pelvis. This went on for a long time.

The revelation

Then I turned twenty-one and I found just mere shred of comfort and relief. My boyfriend (who later on became my husband) who was my only support system took me to a gynaecologist for painkiller shots and sedatives and later on I went through a biopsy that revealed that I was suffering from endometriosis.

Miscarriage, infertility and separation 

After diagnosis, the gynecologist suggested that I get pregnant as soon as possible. I got pregnant shortly after but miscarried a few months later. Six years down the line, my husband suggested we try getting a baby and we opted for artificial insemination. It did not work. Shortly after, my husband and I separated.

Acceptance 

Suffering is a daily battle. However, I refuse endometriosis to take charge of my life. I strive every day to live a normal life because I am an End warrior.” 

That is the story of Lina Sonia, a 36-year-old blogger and pet consultant who is a member of the Kenya Endometriosis Association of Kenya.

A unique tale yet similar to thousands of untold stories by women who silently bear the pain of life.

Understanding endometriosis 

March is the global endometriosis awareness month when the sensitization of the condition actively takes place.  

According to the http://endometriosis.org/ , endometriosis affects an estimated 1 in 10 women during their reproductive years (ie. usually between the ages of 15 to 49), which is approximately 176 million women in the world [3-4]. 

Dr. Charles Muteshi Murwa, a gynaecologist at the Aga Khan University Hospital demystifys the lesser-known condition.  

“Endometriosis is a mysterious condition that cannot be described in one way. It happens when the tissue similar to the lining inside the uterus forms outside the uterus, that is around organs such as the fallopian tube, ovary, bladder, bowel, intestines, inside of the navel and so forth. It can even go as far as the tear glands. And because these cells resemble those on the womb lining, they also respond to the hormones responsible for the menstrual cycle resulting to patient not only bleeding from the cells and tissues inside the uterus but also from those outside the womb," says Dr. Muteshi.

So what causes period pain and to what degree can it be classified as endometriosis? 

“The process of menstruation itself is controlled by inflamation that causes tissue breakdown. The nerves can sense this as a painful process resulting to pain during periods which does not necessarily translate to endometriosis. 70% of cases of extreme or severe period pain turn out to be endometriosis. However, other conditions may cause pain such as adenomyosis where the inner lining of the uterus (the endometrium) breaks through the muscle wall of the uterus,” explains Dr. Muteshi.  

Heredity

According to https://www.healthline.com,  endometriosis can be inherited via the maternal or paternal family line and often affects members of the same nuclear family, such as sisters, mothers, and grandmothers.  

“If you have a family member who has endometriosis, you are at a six times higher risk of developing the condition," the doctor reveals. 

Symptoms   

Here are the most common symptoms of endometriosis 

• Extreme pain during ovulation and menstruation 
• Painful sexual intercourse
• Painful bowel movements 
• Infertility
• Stomach upset,
• Diarrhoea  

Diagnosis 

Anglo-American studies indicate that a delay from 3 to 11 years between the onset of pain symptoms and the final diagnosis of endometriosis. 

“The biggest problem when it comes to end is lack of diagnosis because the procedure is invasive, meaning that one has to undergo a surgery known an endoscopy for proper diagnosis. Statistics talk about 1 in 10 women suffer from the condition but I think that's the tip of the ice-berg. There is also the normalisation of period pain and unfortunately, endometriosis is the last thing in many doctors’ minds when conducting tests on patients. However a lot of research about the condition is still underway,” says Dr. Muteshi.     

Treatment 

“There are different forms of treatment with different levels of effectiveness. Surgery offers long-term relief from endometriosis symptoms. However if surgical treatment does not settle well with a patient, hormonal therapy which includes the use of a Mirena coil could do. Pain medication could also be of help especially to patients with mild symptoms.  However, many patients decry the high cost of managing the condition.

“I am faced with huge financial problems mainly attributed to the demands of managing this condition. For 12 years, I’ve been made to part with large amounts of cash just to receive basic treatment that only surprises the pain for a while,” says 32-year-old endo-warrior, Nancy Njeri. 

"Treatment cost varies depending on the complexity of a case. There are those who would need several surgeries while others need a constant supply of medicines. It also affects one’s productivity since some patients are overpowered by the pain which in turn makes them unable to make as much money as they would have in good health,” concludes Dr. Muteshi.