By Chioma Obinna
Pain is one word every person is afraid of, be it emotional or physical. According to the International Association for the Study of Pain, it is an unpleasant sensory and emotional experience associated with actual or potential tissue damage. But in medicine, pain relates to a sensation that hurts, makes one feel discomfort, distress and perhaps agony, depending on the severity of it. But one thing is certain, only the person who is experiencing the pain can describe it properly.
This aptly describes the case of Ms. Chioma Chukwubuike.
Imagine living with excruciating pain three days in a week; having a university degree and not being able to work even when there are opportunities. Imagine living on drugs every day of your life; knowing that you are sick but you cannot be cured. Imagine having to pay an unending hospital bills; seeking solution to your medical problem and you are told there is no cure. Such is the fate of Chioma Chukwubuike, a pharmacist, who is living with endometriosis, a condition suffered by women and associated with extreme pain.
Just like every other young woman, full of hopes and dreams, Chioma never had an inkling of what she would be going through today. She was full of life hoping for the best until she was 18 years old, when the dreaded condition came knocking.
Unfortunately, what started like an ordinary pelvic pain has now degenerated into a lifetime of agony that had defied medical cure.
It all started when she suddenly developed pains around her pelvic area. Efforts by her parents to arrest the situation proved abortive. She was going from one hospital to another in search of solution. In the process of searching for a permanent cure for the pain, she lost her appendix. As if that was not enough, Chioma was also misdiagnosed for stomach ulcer which she never really had. She was placed on ulcer drugs for several months, still the pain continued unabated.
Narrating her story at the 2017 Nordica Media Merit Award, she said: “For 13 years, I have been battling with this disorder, I have had an unfair share of endometriosis so I want to share my stories.”
Her story resonates the courage and determination to live. She shared this story not out of pity for herself, but so that other women going through the same pains in their own world could learn. To her, it is time to give hope to hundreds of Nigerian women suffering from endometriosis, common but usually misdiagnosed due to ignorance on the part of medical practitioners.
“Endometriosis sucks”, Chioma echoed. I don’t know why endometriosis chose me but I know it has dealt with me.” For instance, Chioma who now lives with the pains and agony caused by the condition explained how what started like a pelvic pain almost consumed her.
As someone who is very enlightened about medical issues, it was never difficult for her to go seeking medical solution to her problem. But it shocked her that even though she sought medical solution early enough, the various doctors met could not diagnose her properly. At that point, I was diagnosed of appendix. Endometriosis took away my appendix at age 18,”she explained amidst emotions.
According to Chioma, during further examination as the pains continued, it turned out to be that the pain was not appendix. “That was how I lost my appendix,” she added.
She is one of many Nigerians who may have lost their lives or harmed permanently due to misdiagnosis in Nigeria.
Chioma who may be in her mid-thirties, continued in her search for a medical cure. But the pains continued unabated. Meanwhile, medical experts and researchers have continued to seek to conquer the disease. Unfortunately, the primary symptom of endometriosis which is pelvic pain, often associated with menstrual period,is sometimes mistaken for other conditions that can cause pelvic pain, such as pelvic inflammatory disease (PID) or ovarian cysts. It may be confused with irritable bowel syndrome (IBS), a condition that causes bouts of diarrhoea, constipation and abdominal cramping. IBS can accompany endometriosis, which can complicate the diagnosis.
“It is very difficult to explain all I have gone through within a short time but we are meant to understand that it is a condition where the lining of the uterus grows outside the uterus.”
Having to deal with the psychological trauma that comes with the condition, she said: “The psychological trauma of having to live with the pain, three days in a week, the fear is unwelcome but a persistent problem”. She could not hide the fact that she was really going through some nasty pains. Her family members also shared in her pains as she switched off from her social life as a result of pains of endometriosis.
“But the worst part of it is that there is no cure. It can happen to anybody. I don’t know why endometriosis chose me but it has really dealt with me”.
Advocating for a better awareness on endometriosis, she said: “I stand here today because it is important to make it known to every woman. It has really dealt with me. At 18, endometriosis took away my appendix. I was feeling pains and the doctor felt it was appendix and it was removed.
She continued: “I have gone through a lot. Not only had it taken away my appendix I have been placed on anti stomach ulcer drugs. I have been misdiagnosed for so many things. I have been taking a whole lot of drugs to recuperate from the pains. All to no avail”, she noted.
Lamenting that many Nigerian doctors are still ignorant of the problem, Chioma, who has seen about 12 medical doctors, said: “It is very important we have trained doctors that can diagnose endometriosis accurately, because if you meet a doctor that does not really know about the disease, you will really suffer so much pain. Also, your finances will suffer and your career will suffer as well”.
She added that as a trained pharmacist and a master’s degree holder with other qualifications she is still unemployed.
“I stand here today unemployed on account of endometriosis. I have gone through five surgeries. In fact, I am just recovering from the last one.
“There is need for women to speak out. I will like to tell my fellow women that if every month you go through excruciating pains and you meet your doctor he tells you it is your pelvic, just like I was told in the past, please see another doctor.”
Lamenting that it took a total of 14 years for her to diagnose the real problem, she added: “Endometriosis sucks. So many times I have heard that endometriosis is rare but I stand here to tell you it is common because I have found so many women with endometriosis. It takes the right doctor to diagnose endometriosis. In my case, it took 14 years of excruciating pains to diagnose.
“Every week, I spend three days on bed not being able to do anything. So endometriosis is a very terrible disease. It will suck you of your money. You will not have savings and again, for drugs I tell you it is also a big problem because it all sucks.
“I have taken so many drugs. In fact, it will make you look old. The side effects are terrible. It is not only that endometriosis keeps you away, it also affects your social life because you cannot keep appointments. I cannot tell somebody I will see you on a particular date and I will be there because of endometriosis.
“It affects you career, your marriage, causes infertility. For 13 years I have been battling with this disorder. I have had an unfair share of it so I want to share my stories. Let people be aware of this problem because I have had an unfair share of it. I was going from one doctor to another. I have seen about 12 doctors before I met Dr. Abayomi Ajayi who gave me a listening ear and confirmed it was endometriosis. But if diagnosed early it can be managed better. I plead that people support our campaign to ensure that people know about endometriosis before it sucks them of their livelihood.”
Chioma, who is currently a member of an Endometriosis Support Group, believes that with more awareness, women everywhere will conquer endometriosis.
Lamenting the pains women go through, the Medical Director/CEO, Nordica Fertility Centre, Lagos, Abuja and Asaba, Dr. Abayomi Ajayi, described endometriosis as a common disorder in women of reproductive age.
According to Ajayi, the cause of endometriosis is unknown, but it is recognised as the growth of cells similar to those that form in the inside of the uterus (endometrial cells), but in a location outside of the uterus.
Endometrial cells are the same cells that are shed each month during menstruation. When a woman with the disease has her monthly period, the blood and tissue shed from the endometrial growth has no way of leaving the body, hence resulting in internal bleeding, inflammation that may result in pain, adhesions and bowel problems.
Ajayi said endometriosis also causes damage and blockage to the fallopian tube by impeding the journey of the eggs down the fallopian tube to the uterus, hence leading to infertility.
According to him, the pains are so severe that for some days some of the women may not be able to move out of bed. Acknowledging that some of the women keep the pains to themselves, he said endometriosis is often misdiagnosed leading to delays in treatment, therefore, there is reason to create awareness about the disease.
Unfortunately, there is no clear data about the prevalence in Nigeria but many women have become their own pain manager for years, due to the gap between medical experts and scientific understanding of the disorder. As such, thousands of Nigerian women in their reproductive age like Chioma have been rendered childless due to the disorder.