By Sola Ogundipe
I’m taking it for granted that I am addressing a respected and influential audience that probably has little or no knowledge or information or awareness about endometriosis.
The essence is in no way intended to bore you with medical jargon, but to actively engage you in a useful and sustainable intervention process towards stemming the tide of a sinister, but silent disorder.
The objective is to elevate your awareness and enrich your knowledge, with the expectation of agitating your curiosity and actively involving you into stemming the tide of this health condition that primarily affects women of child-bearing age, and secondarily, every other person.
What is endometriosis? What do you know about endometriosis? How does it affect women?
As a woman, you may be living with the condition, or perhaps you have a daughter or sister that is affected? As a man, you may not experience painful periods, but if as a father, husband, brother, uncle, employer, colleague, teacher, etc., there is a woman in your life that has this condition, then you need to be concerned because you are affected.
There are a number of reasons endometriosis should be discussed much more than it is currently. One reason is that the condition may not be exactly what you think it is as a person.
It is important to overcome such ignorance because ignorance has tendency to fuel problems. We all must learn about endometriosis because ignorance breeds insensitivity to it, and insensitivity breeds inaction and complications. So it is important to get the facts.
An estimated 10 percent or 1 in 10 girls and women worldwide are living with endometriosis. These are wives, daughters, sisters, nieces, aunts, friends, relatives, and so on.
Personal testimonies of women who are battling endometriosis abound. Permit me to tell you one.
It’s the experience of a woman, called Fola, whose professional colleague and friend – Bola – is living with endometriosis. For as long as Fola could recall, whenever Bola, had her periods, it was hell.
Fola is the middle-aged Executive Director of a thriving hospitality business with branches in Lagos, Abuja and Port Harcourt. Bose, the 30-something-year-old lady in her early 30s is the outfit’s brilliant Business Development Manager and technically the brains behind the company’s success.
It took a while for Fola to realise Bose had a peculiar pattern.
For 10 or more days every month, she was practically in hell. At times, it got so bad, she stayed in bed all day, away from work.
Bose was to later reveal she was 21 years old when she was diagnosed with endometriosis after almost nine years of living with the condition. Since then, Bola has lived another 12 years with the condition.
One day, she fainted at work and was rushed to the Accident & Emergency. An ultrasound revealed cysts, which was later suspected to be endometriosis. After three months, she was sick of the treatment and her pain was becoming unbearable.
After years of pain, several doctors, endless questions, and no answers, Bose was formally diagnosed with Stage IV Endometriosis. She had pain morning, noon, and night on every day of her cycle. Daily pain took its toll, yet three gynecologists assured her the pain was normal.
The very first time she heard the word “endometriosis,” Fola was at a loss as to what it was and stunned that she’d never heard of it before.
“Endo-what?” she had asked. The condition was correctly described to her as a situation in which the lining of the uterus transplants itself outside of the uterus to the lining of the abdominal cavity and to other organs.
And, that when the lining of the uterus bleeds, the transplanted uterine lining also bleeds into the abdominal cavity, causing bloating and intense pain, some of which never goes away, and creating scar tissue that causes all sorts of ugly issues deep inside the body.
This was not a totally accurate or complete explanation of the disease as she now knows, but endometriosis is indeed a complex disease. The doctor said the only cure is a hysterectomy (removal of the womb).
Like other women with the condition, Bola agreed that the biggest misconception about the endometriosis is that the pain experience is limited to just the monthly period.
What Fola heard shocked her. How was such a thing possible? How had this happened to her colleague she had worked with for so long without knowing she had been suffering physically, and certainly not period wise? Her questions received few answers, but speculation, lack of facts, incorrect information were all she got.
She thought of what she knew about Bola’s personal life and realised it wasn’t much. Okay she was married but awaiting the fruit of the womb, but not much after that.
A number of women living with endometriosis, think the biggest misconception about the condition is that the pain they experience is limited to just the monthly period.
Fola thought of approaching Bose herself for answers, but somehow felt shut out. Others in the office felt it was going beyond bounds and an “intrusion” into what ought to remain private and personal. Did Bola want to be heard, to be understood, or for others to her condition? People urged Fola not to say anything about the condition because it would embarrass Bola and the felt she didn’t want a lot of people knowing.
Fola wished for more information about this thing called endometriosis and did her best to obtain it but never did get to talk to Bola about her diagnosis, or the hysterectomy, or her life with the condition.
Bola has visited dozens of doctors, and one gastroenterologistý doctor even told her what she had was “functional pain”. She was told to stop confusing her body with her thoughts, which was frustrating because Bose wasn’t making this pain up. She tried numerous treatments and a lot of different medicines. But even with all that, she’s still not back to living a normal life.
Even after a decade of doctors appointments, tests, and pain, treatment options aren’t the best. The standard treatment – laparoscopic excision – a difficult surgery performed by less than a handful of physicians in the developing world.
Thanks to women particularly vocal about their struggle, endometriosis is getting a lot more attention, but it remains an obscure topic for most probably because periods are, and always will be, an irritating fact of life. For women, like Bose, periods are more than just an inconvenience—they’re downright debilitating. The pain is the biggest symptom and also the biggest misconception about endometriosis.
Doctors are learning a lot more about how best to help those who suffer from it even though it’s a unique experience for each woman who has it. Many who suffer from endometriosis are invisible and often undiagnosed. People still don’t see it or believe it exists because so many who have it look normal and hardly talk about it.
Women that welcome their period with excruciatingly painful cramps that leave them struggling to get out of bed are the reason we are here. It’s actually not as unlikely as you might think: Right now there are 176 million women suffering from this condition—one in 10 in the general population.
Endometriosis is usually accompanied by symptoms including “painful periods, painful sex, infertility, constipation, painful bowel movements, right and/or left-sided pain, and back pain.”
Talking about infertility, while a lot of people know something about infertility, few attribute they have no idea why it is so common.
Endometriosis is one major reason.
The exact prevalence in Nigeria is unknown but the challenge is to improve the lives of people affected by endometriosis and to decrease the impact it has on those with the condition and their families and friends.