Many women suffer in silence as late diagnosis hinders endometriosis fight

Merolyne Adhiambo, a 25-year-old public relations student at Daystar University, was diagnosed with endometriosis in April last year, essentially cementing the painful relationship she had with the medical condition for six years.

She is among the one in 10 women of reproductive age (15-49) or about 189 million that suffer from endometriosis globally, according to the World Health Organization.

The time it took to correctly diagnose her condition is typical. A study done in 10 countries across five continents, including Africa, and published in the journal American Society for Reproductive Medicine showed that the delay between the start of symptoms and surgical diagnosis of endometriosis was seven years. The average age of diagnosis is about 30 even though some women with the condition felt symptoms as early as their first period.

Despite the condition being as common as diabetes and a whole month – March – being set aside to create awareness on endometriosis, the public knows little about it. Lack of research and funding for the condition, which is often dismissed by doctors and others as ‘women’s troubles’ or ‘normal period pains’, means sufferers can live in severe pain, unable to work or socialise.

Endometriosis is a disease where womb tissue grows elsewhere in the body, such as the fallopian tubes, ovaries, around the pelvis and sometimes the lungs, causing extreme pain and sometimes infertility. If the cells grow elsewhere apart from the uterus they cause inflammation, and as they shed off during periods, the menses have nowhere to go, thus generate cysts, which cause friction that result in unbearable pain, says Dr Wanjiku Ndung’u, a gynaecologist.

Besides the pain, 30-50 percent of women with the condition experience infertility, according to the American Society for Reproductive Medicine.

It is not known exactly what causes the condition and so there are many theories. This also means that the treatment is very difficult.

Experts say that It is likely that genetics play a role in causing endometriosis while pregnancy only provides temporary relief of symptoms but does not cure the condition.

The condition has four stages (minimal, mild, moderate and severe) depending on the severity of the invasion of cells on other body parts. Cases of infertility are common in the last stage.

Delayed diagnosis

The disorder is also known for its delay in diagnosis, with many women using over-the-counter drugs to remedy the pain unsure of what is actually ailing them.

Dr Ndung’u explains that the reason for the delay is that since the pain is usually felt during periods, many women, confuse it as normal period pain and do not see it as a big deal, only seeking diagnosis when the situation gets severe.

Although Merolyne had experienced paralysing menstrual periods since her teens in high school, a doctor only confirmed that she had endometriosis at age 23.

Other signs of the illness are pain during or after intercourse, pain with bowel movements or urination and excessive bleeding.

In an interview with Newsplex, Merolyne explains that she used to manage the painful periods using painkillers, until one Sunday morning in 2012 while in Form Four. “I remember I woke up and felt so much pain in my abdomen. I was worried because my periods had ended the previous week so it was unexpected,” she recalls.

As usual, she took painkillers but this time round felt little relief. But since it was barely weeks to the Kenya Certificate of Secondary Education exam, she did not seek further medical intervention.

On completing school, the first gynaecologist Merolyne visited said she had a hormonal imbalance and prescribed injections. This intervention resulted in her periods disappearing for a year during which she also experienced hot flashes.

However, the effectiveness of this medicine was short-lived, and she had to seek help elsewhere. At this point, no gynaecologist had checked her physically. In another place, she remembers that she was advised to just go home, take warm water and sleep. A pelvic examination by a doctor may identify cysts in the pelvic area or ovaries.

“The difficulty is that you cannot conclude on a diagnosis unless you have evidence. The doctor could even be thinking about it but it would be wrong to make a diagnosis of endometriosis without doing a surgical analysis,” says Prof Osur.

Another gynaecologist suggested that she take antibiotics to rule out a pelvic infection. But the pain persisted, and that is when the doctor told her mother that surgery was necessary to verify the cause of the pain. But before the operation, she experimented with traditional medicine.

High cost

Dr Osur says the high cost of doing a surgical diagnosis and availability of the service bars many women from getting checked.

Merolyne’s laparoscopy, a surgical procedure used to view a woman's reproductive organs, cost an estimated Sh350,000, but doctors say the figure varies based on the stage of the condition, the time taken to do the operation and the number of experts in the surgery room. A 2012 study by the European Society of Human Reproduction and Embryology (ESHRE) involving 12 treating centres in 10 European countries that surveyed 909 women with surgically-diagnosed endometriosis and who had visited a health facility placed the average total annual costs at around Sh1.1 million. These are direct healthcare costs, direct non-healthcare costs and productivity loss due to the illness and its treatment.

Loss of productivity accounts for two-thirds of the total costs and was double the direct healthcare and non-medical costs. About 95 percent of direct expenses are healthcare costs (medication, physician visits, surgery and monitoring tests) while the other five percent are non-medical costs (transportation, support with household activities). Merolyne admits that she is lucky that her parents had employer-based medical insurance, which she uses to cover for medical purchases and check-ups. She is among six percent of the more than eight million Kenyans with health insurance whose plans are facilitated by an employer, according to the Kenya Integrated Household Budget Survey 2015/2016.

But finances are not the only costs she has incurred. She lost many friends who could not understand her plight, while others, especially women, were quite insensitive about her weight loss and low moods. She battled depression and would, on many occasions, wake up to do nothing but cry.

“I only have two weeks of a normal life every month. The other two weeks are very hard for me, and as my periods approach I get so traumatised,” she says.

About a third (36 percent) of the women in the ESHRE survey had problems with depression/anxiety while more than half (56 percent) reported pain and discomfort. Other health-related problems experienced were mobility problems (16 percent), problems with usual activities (29 percent) and lack of self-care (three percent).

About three in four women with endometriosis experienced a drop in their quality of life. Among the women surveyed at least two considered their current state of health to be worse than death.

Despite the negative effects of the illness on the well-being of many women little has been done to formulate policies and provide resources that address the special needs of endometriosis patients. For example, a look at the Ministry of Health’s Working Group Medium-Term Expenditure Framework for the period 2019/2020 – 2021/2022 does not mention endometriosis, with the most relatable item, “procuring family planning and reproductive health commodities”, which has the sole objective of having manageable family sizes, estimated to cost Sh97 million, excluding donor funds.

This neglect prevails even as it has been established that the condition can lower the productivity of women by two-fifths, thereby posing a potential dent on the economy. Reduced effectiveness at work accounts for more loss of productivity than time away from the workplace. Non-work related activities, such as studying, childcare, housework, shopping and exercising are also significantly impaired by the painful symptoms of endometriosis.

Evidently, more information about endometriosis should be made available to gynaecologists and general physicians to reduce the time taken to diagnose this condition.