© 2018 - International Centre for Investigative Reporting
How single women with fibroid go through pain and stigma that leave many traumatised for years
ON first encounter, you might think she was due to have a baby. With a protruding belly as big as that of a nine-month-old pregnant woman, Immema John waddled along the street while neighbours and passers-by would call out to her as ‘Mama Ejima’ (mother of twins).
But Immme , a 40-year old native of Akwa-Ibom State in the south-south part of Nigeria, was neither conceived of a child nor was she married. For over 11 years, she suffered fibroid
“I found out that I had fibroid and would often bleed longer than I should when I was menstruating. Sometimes, I would bleed for two to three weeks and it made me very weak that I was always rushed to the hospital.
“I took two to three pints of blood whenever this happened, which was like on a monthly basis, my blood level at such times was often at three per cent, that I would need the blood transfusion for my blood level to go up to seven per cent,” Immema recounted.
Fatima Ali one of the doctors that operated on Immema told The ICIR that the major hindering factors for people undergoing surgeries is funding, however, after Immema witnessed two women lose their lives during surgery, money became the least of her worries.
She said she could not trust that she would make it out alive anytime she entered the theatre, despite assurance from the doctors.
“When I found out in 2007 that I had fibroid and was asked to make a down-payment of N100, 000 (One hundred thousand naira) for the surgery at Gwagwalada Specialist Hospital, Abuja, it was not that I didn’t have the money then, days before I was to be operated on, two women died in the theatre and they both went in for fibroid removal surgeries.
“I got scared and would not go in for the operation, in fact, I packed my things, left the hospital and never went back again,” she said, taking a deep breath.
For more than 10 years she said she moved about with the fibroid still growing in her uterus as her stomach kept protruding while she started fishing for information on different self-prescribed herbal remedies from friends and family members.
At that time she said her medical bills were paid from money earned through a small Buka (restaurant) that she owned.
“I took different concoctions and drugs. None of the many treatments I had gone through was lower than N50, 000 (fifty thousand naira) but none of the treatments worked for me because my stomach kept protruding and people kept calling me ‘Mama Ejima’ (mother of twins) wherever I go. My stomach was that big that I looked like a nine-month pregnant woman.
Unfortunately, as she kept seeking for remedies through every avenue apart from the hospital, Immema said she had to close down the restaurant when the financial demand for herbal treatments became quite high that she couldn’t afford to operate the restaurant anymore.
By October 2018, when Immema had exhausted all avenues and was ready to have the fibroid surgically removed, she had no money for the surgery and had to depend on contributions and goodwill of family and friends.
“I used to be in a relationship with someone that I thought could lead to marriage, but he never contributed for my hospital bills or the treatments that I had been taking all along, he was not supportive in other ways either, emotionally, he wasn’t there at some point. I knew the best thing was to call off the relationship, I felt he was relieved when I did,” Immema said.
Breaking the myth of fibroid
Uterine fibroids, also known as Leiomyomas or Myomas, are the most common form of benign uterine tumours. Experts have identified abnormal bleeding, pelvic masses, pelvic pain, and infertility as some of the symptoms that often manifest before patients seek help or go for surgeries.
Research has shown that Fibroids affect around 30 per cent of all women by the age of 35 years, and from 20 to 80 per cent by the age of 50 years. They usually develop between the ages of 16 to 50 years during the reproductive age when estrogen levels are higher.
Fibroids are benign tumours that are non-cancerous often found in the uterus. In most cases, if growth occurs within the intramural wall of the uterus it could affect fertility.
Doctor Benjamin Olowojebutu, a Maternal Health Specialist and founder of the Benjamin Olowojebutu Foundation (BOF), who has carried out over 323 free fibroid surgical operations in more than six states in Nigeria under the 36 goals agenda of BOF, said that there are no known causes of fibroid, but risk factors which includes obesity, prolonged dysmenorrhea, and familial (hereditary).
Against popular beliefs that fibroid is an ailment for aged women, the plight of Okechukwu Kelechi, a 24-year-old youth corp member refutes this narrative.
KC, as she is fondly called, started observing abnormal hormonal changes which made her question the state of her health.
“My menstrual flow was off the charts. It was such that I bled profusely for close to two weeks, which is abnormal because normal for me was three to four days, this was happening in my 3rd year as an undergraduate in the University.
“I was 22 years old, preparing for final exams and projects, I emaciated a lot, this was more pronounced each month after my monthly period which often lasted for two weeks, I would lose lots of blood, but somehow, I kept telling myself that maybe it was normal, probably it runs in the family.
“But after my final exams in November 2016, when I finally went in for medical tests, the doctors confirmed it was a fibroid,” she said.
Episodes of fear, pain, and stigma
Kelechi had to go through a hysterosalpingogram (HSG) scan before the doctors could carry on with the surgery.
“I was very scared because my first time of seeing anyone that was suffering from fibroid was on TV, where a nine-year-old girl was pleading for financial assistance to carry out surgeries from the public, she was looking malnourished and very tired I believe she died afterwards so when I got that diagnosis I was scared.
“On the day that I went into the hospital to schedule a date for the scan, I saw a lady that had come for the same test and while she was being checked, there were lots of screams from the hall, really heartbreaking screams. She went in on her feet but was brought out on a wheelchair, she was weeping as if she was going to lose her life.
“I was assured it wasn’t going to be painful, that I should take lots of painkillers before coming, which I did,” she narrated, laughing at this point.
“Little did I know that I was going to face a worse fate than what she went through, the scan was a very painful one, it had to do with the uterus and that comes with a lot of contractions and lots of pains.
The HSG procedure is a special type of x-ray examination of the fallopian tubes and uterus. The entire test takes about 45 minutes. During the procedure, a thin catheter is inserted through the cervix into the uterus, and a special radio-opaque contrast material dye is injected. The dye allows the shape of the uterus and fallopian tubes to be seen. The progress of the dye is followed through fluoroscopic x-ray to see how it moves through the reproductive system.
“During the scan the deeper the catheter went, the more uncomfortable I got, at some point, I started feeling my uterus contract, though the nurses kept teaching me breathing exercises to keep me calm, that didn’t help either.
“I felt like I was being torn apart, I puked and was rolling in my own vomit. It was so painful that I passed out.
“Fibroid is not what I wish anyone to go through, I was scared, panicked, and anxiety almost got the better part of me. At some point I almost gave up because of the pain,” she said.
After the test, KC was bedridden for days, to escape the excruciating pain, she started abusing painkillers, but that still didn’t provide the escape she yearned for as the contractions lasted for about a week.
It’s estimated that globally around 62 million people had a drug use disorder in 2016 — two-thirds were male (40 million) and one-third female (20 million). A good number of these people abuse painkillers.
In Nigeria, data also show that the share of women suffering from alcohol and drug disorder has risen from 1.3 per cent in 2005 to 1.4 per cent in 2016.
Medical practitioners say drug abuse could lead to organ damages, cognitive impairment, and suicidal ideations or in a more severe case, death.
Being part of a society where marriage and fertility often are some of the parameters that some would say gives a true definition of a woman, KC said she experienced social stigma and angry outbursts from some people who blamed her for having a fibroid.
“Most people told me that I was too young to have a fibroid, others were of the opinion that if I was sexually active that I shouldn’t have a fibroid. Actually, a close friend called me on the phone and advised me to just get married very fast.
“She advised that I should just marry anyone asking for my hand in marriage at that time so that I can get pregnant, else fibroid will take the space in my womb meant for my children,” KC said, her voice trembling as she narrates her ordeal.
However, she said that some people would ask her what she had done that could have possibly lead to her having fibroid tumours as if she was the author of her own misfortune.
She told The ICIR that after her surgery, she shared her experience and testimony on social media with picture evidence to encourage others going through a similar experience, but got reprimanded by friends and some members of her family.
“It was really challenging for me as I tried not to listen to them, I just focused on my God, and I carried out researches on my own to understand what I was going through.
“Even after the surgery when I posted some of the pictures of the surgery and the fibroid tumour that was removed, some of my friends and family members called and told me that I shouldn’t do something like that, they said it was wrong,” she said.
Exploring alternative routes
Kelechi said she was advised by a friend to drink aloe vera gel instead of going for a surgery that the tumour will dissolve on its own and she will pass it out in her stool or it might just melt away.
“I consumed lots of liquid aloe vera, but at some point, I stopped because I felt it was not working,” she recounted.
It wasn’t until after the fibroid was removed through surgery did she learn from the doctors that the aloe vera was effective but not quite the way she wished for. The gel only made the tumour degenerate within its own caucus and was staying put.
“It would have busted inside my uterus and things could have gone downhill from there,” KC said.
Her narrative is same with Immema who said she has more than 20 collections of different herbal remedies apart from various herbal powders she had to consume.
“I also think the herbal drugs I drank kept escalating my health condition because I don’t always have blood.
“Before I was operated on, the doctors told me to stop taking those drugs so they can monitor the state of my health before the operation,” she said.
The health care system that failed us
Kelechi said her guardian had spent close to N1, 000,000 (One million naira) for her fibroid treatment and even though she was registered with the National Health Insurance Scheme (NHIS), she said she was not covered by the scheme.
She cited a near death situation where she was rushed into Wuse General Hospital, Abuja, by 1.am in the morning due to the sharp contractions.
“In the haste to get me to the hospital because I was almost losing my life, my father forgot the NHIS card, though I already have a file in the hospital, the nurses and doctors on duty refused to attend to me or administer first aid treatment.
“I was bleeding and everywhere was smelling and my father was almost crying, we had to place calls to some doctors who vouched for us it wasn’t until this was done that I was able to get any form of attention, at this point, I was almost giving up on life, I thought that I will die,” she said, as she tried to suppress tears.
Kelechi is not the only one that had been left at the mercy of a health system that doesn’t give a hoot about the patients.
Theresa Lanshima, a fibroid patient also told The ICIR how she was first misdiagnosed and how her treatment was stalled for a month due to a medical strike.
“I was first diagnosed with appendicitis, but after further scans, the doctors said it was an ovarian cyst and an unknown tumour they couldn’t identify, that had to be surgically removed, they still did not know it was fibroid at that time.
“The scan showed that the tumour was eight centimeters at the time of the diagnosis but there was a two-week strike by the government medical body in the country, I had to go home.
“I went back after the strike was called off, but by then, the tumour had grown to 24 centimeters, the scan showed that my uterus was pushed out of the right position and my organs were somewhat displaced, they were not in the normal positions. The pain was excruciating.
“In fact after each scan, more than two doctors will have to look at the scans to make sense of what they were seeing, because everything was in disarray.
“In fact, I was advised by the doctors to either get pregnant or undergo a hysterectomy,” she said with a rueful smile.
Theresa said her situation had worsened so much that when she goes in for examination, the gynaecologist could feel the tumours through the vulva.
Apart from health complications, Theresa also had to work seven hours a day, and the constant trips to the hospital for check-ups, and the health leaves she kept asking for was putting her employment status in jeopardy.
“I was taking permissions to go to the hospital quite often that at a point, I was told that if I was not fit for the work that I should quit.
“I didn’t want to lose my job, and because I was not looking emaciated as most people will assume that I should look when I tell them I am suffering from fibroid, it was quite hard to put up a convincing excuse at work most times. I stopped going to the hospital, unfortunately, I still lost that job,” she said.
Theresa said she is currently having the tumours removed through evacuations two years after her first surgery.
“I have had more than 15 fibroid tumours and cysts removed already, even at that, most people don’t believe me because my stomach is quite flat, I guess they are expecting something bigger than this,” she laughed, pointing at her abdomen.
She prayed the tumours don’t grow back again as she is not sure she can handle the unending pressure and advice from different quarters asking her to get married.
“I actually started making plans to have my eggs frozen, I felt that was my only shot at having children in the future,”
“I hope they don’t grow back again because the pressure that comes with people telling you to get married is no joke,” she said.
Where experts disagree
Isma-il, popularly known as Baba-Aisha herbal medicine is one of the herbal medicine doctors The ICIR consulted in the course of the investigation that promised 100 per cent cure of fibroid without surgery or pharmaceutical drugs.
When the reporter approached the herbal doctor for fibroid treatments, the excited doctor hurriedly switched off the loudspeaker that was blaring out litanies of cures that his medicines offer, for the different type of ailments, ranging from Malaria to Sexually Transmitted Diseases (STD’s).
He gave the reporter three wrapped powdery mixture without names or NAFDAC registration number to be taken by the patient at the cost of N800 (eight hundred naira).
“One dose is enough to cure the fibroid no matter the level, this one is Antsi and the other one is Senyar, he explained when the reporter asked for the names and ingredients contained in the drugs.
“Just give it to your sister, she will be fine,” he said with assurance.
Initially, he wanted to know exactly how the patient was faring but relented when he was told that the patient was not in the same city but would have the drugs mailed over.
“If only I can see the patient it will be better, but take this drug, it is the end of fibroid, he added still showing the reporter some of the other drugs that he has for other ailments.
Some of the drugs advertised were also drugs for sexual organ enlargement remedies.
Another herbal remedy doctor who is notorious for advertising his herbal remedies, which he claims can cure cancer, fibroid and STDs, with the use of graffiti in highbrow areas and the suburbs in Abuja, identified as Tim Abel on the Tru-Caller identity application told the reporter over the phone that he could cure any type of fibroid without carrying out a scan or surgeries at the cost of N120, 000, 00.
He said, “I have drugs for fibroid but it is N30, 000, 00 for a dose and you need to take it for four months, but you can get cured before that four months, but you must take it for complete four months.’’
Abel promised that the medicine can be delivered to any destination the reporter wants, he gave his address at Block 90, flat 3, opposite Karu Shopping Complex, Abuja.
Abel also told the reporter to check the company’s Facebook account for more testimonies on recorded cures @halaminherbalcentre
However, when The ICIR checked the social media account, it was related to a real-estate page with the same address as the herbal centre. The real- estate page had the same name as that of the account number sent by Mr. Tim for the payment of the drugs to be purchased.
Account details–Name: Trump-Hills Investment Int’l Ltd, Account Number: 2024490977, Bank: First Bank.
However, Doctor Oladuni a Gynaecologist and obstetrics (O&G), told The ICIR that herbal remedies are not recommended in the treatment of fibroid, he said that many women sometimes put their lives in danger by inserting different toxic things into their private parts.
He also said that there are some drugs that can be used to shrink the fibroid, however, Oladuni advised that the tumuors be removed to avoid regeneration and this he said can be done only through surgery.
Also contradicting what the herbal doctors have said is Doctor Olowojebutu, who said that out of the 323 women he has operated on, about 70 per cent were initially on unorthodox treatment which he said only worsened the situation.
Olowojebutu also said that the idea of herbal remedies shrinking fibroid is absurd.
“It is just like saying you want to shrink a baby in the womb, the question now is, even if you manage to shrink it, does it stay inside the stomach, how exactly would you bring it out?
“Surgical removal of fibroids does not guarantee that the tumours won’t grow back, but chances are that before a tumour grows back, the woman might have conceived. No herbal medicine can shrink fibroid, some of these women have been cajoled, they have been wooed by people that just want to keep stealing their money,” he said.
Lovely Nwakpo, also a medical doctor in Ebonyi State who has carried out several fibroid evacuation surgeries was of the same opinion with Olowojebutu and Oladuni, she said that herbal remedies do not cure fibroids and advised that ladies get married early, or after surgical removal of the fibroids as the removal does not guarantee that the tumours won’t grow back again.
“I don’t think taking herbal medicine can remove the fibroid or shrink it, and if it did, most of the ladies that come to the hospital to have their fibroid tumours removed won’t come, because they use these things before coming in for treatment,” she said.
Nigeria does not have national data on the number of women suffering from fibroid or the numbers that have received treatment for this sickness either, but many women have died because they could not afford to pay for the surgery.
Contribution from Uzor Ogechukwu.