‘Our battles with incurable health disorder endometriosis’ The Nation Newspaper

It is believed that between 30 and 40 per cent of women in Nigeria suffer from endometriosis, a health disorder that manifests with pains, menstrual irregularity and, quite often, infertility among women of reproductive age. Ironically, they show no symptoms, and diagnosis only occurs years later. ADEOLA OGUNLADE shares the heart-rending stories of some victims of this health condition from the second international conference of the African Endometriosis Awareness and Support Foundation held in Lagos recently.

  • Victims recall ugly experiences with little known ailments afflicting millions of women

  • I lost my navel because of it, says survivor

  • ‘How pains from endometriosis regularly forced our absence from school, office for weeks’

  • Everyone thought I had been used for rituals, says victim

Aona Dintwe’s life was virtually at a standstill after the broadcast journalist from Botswana was diagnosed with endometriosis in 1997 at the age of 14.

Like many other women in her shoes, Dintwe suffered only the pains and stigma that come with the ailment but also the misdiagnosis that often attends it. In her own case she was thought to have been infected with one of the sexually transmitted diseases.

Recounting her experience with endometriosis, she said: “In my teenage years, I was always in pains and I was made to believe that it was normal.

“At 14 when I first saw my period, literarily from the first month, I was that young girl who would miss school and throw up, and most times, I would have to be taken to the hospital.

“I always had sharp pains and heavy period, and we did not know what it was until 14 years after the excruciating experience.

“I had an appointment with the doctor while I was trying to conceive, and it was then that I knew I had endometriosis.”

Before then, she said, she had been wrongly diagnosed with sexually transmitted diseases. She said the next time she visited the treatment centre, she was accused of having an abortion because she was bleeding heavily.

Dintwe said she was basically living on drugs until she decided that she should not become addicted to pain relievers.

She said: “As I am sitting down now, I am in pains but I have to bear it. I have learnt to ignore the pains so I don’t become an addict.

“By then, I was not yet sexually active, and that was where the misdiagnosis came from. The doctor told me I had an STI even when I did not have sex.

“At that point, I had not tried to make babies but my friend advised me to go for a test. The test proved that one of my fallopian tubes was blocked.

“But after surgery, the doctor said the chances of having pregnancy were high, and that was how I conceived.

“There is no cure for it. You just have to manage the situation. But early diagnosis would help you to manage it effectively.

“It took me 14 years of misdiagnosis and going to the hospital every month with my life being disrupted.  I did not hear anybody talk about endometriosis.

“In my case, I got married and I am still waiting on the Lord even after coming out with my story in Botswana and sharing my journey.

“I have been creating awareness about endometriosis for seven years, not minding the odds.”


‘I forced myself to function in school, but at home, nobody could sleep’

Miss Patricia Raymond, 43, an entrepreneur and criminologist had been living with endometriosis pain since her first menstruation at the age of 14, though people around her didn’t know what she was going through.

Initially, she did not know what was happening to her and her parents could not do much to help her situation.

She said: “I am so overwhelmed to hear that there are other women who are going through this condition. I can relate to them.

“Endometriosis is scary. I was 14 years, and the first question I asked my guardian with tears was how I would stop the thing.

“At 14, I started seeing genealogists. I visited gynecologists and they told me that it is normal.

“When they saw the challenges I was going through, they asked whether the condition was there when I started my period, and I said yes.

“They said that it was normal and would stop as soon as I started to give birth. I was only given a pain reliever.”

Raymond recalled that she could not function well as a school pupil while another classmate of hers named Elizabeth would faint on the assembly ground and would not come to school for one week.

In her own case, she said, she would force herself to school, but at home, nobody can sleep”.

The problem however persisted even after she graduated from school.

She said: “I would take seven days off from work at times. They knew at my place of work that within those days, I could not function.

“They had the choice to say go home, but they did not fire me. Some ladies took four or five weeks off while I only worked for about three weeks or less in a month.

“During the remaining days, I did not know what was happening in the world. l could not function. I could not move or talk, and with every surgery, it got worse.”

Eventually, in 2003, she had her first surgery. She bled for days and thereafter started looking for financial assistance to augment her salary in order to go for treatment. She had lived with the problem for decades. From weighing 69, Raymond went down to 41. At a point, she could neither eat nor drink because she was bloated.

She said: “I was like a skeleton. I went to the military hospital and started with a Human Immuno Virus (HIV) test and others.

“I went for a CT scan, which cost me N45,000, but they didn’t see anything because water had taken over my body.

“I had another surgery, which took away my navel. As I speak, I don’t have a navel because of endometriosis. I was told to remove it because they said that my life was dependent on it.

“I have decided to tell my story to help others living with this condition and to create awareness on the need for on-job education for medical practitioners, who were also ignorant of the condition.

“At age 14, if I knew what endometriosis was, I would not be here right now. I am so livid that medically, my doctors, surgeons, and gynecologists were clueless, and because of that I suffered.

“I will hate for any little girl to go through what I have experienced.”

Dintwe and Raymond were among three women who share their stories at the 2nd international conference of the African Endometriosis Awareness and Support Foundation (ESGN) held in Lagos recently. It was tagged Endometriosis – An Unrecognised Burden in African Women.


‘I was told I had been used for rituals’

Annie Jimmy, a 33-year-old business administration graduate of Federal Polytechnic, Okoh, Anambra State, also shared her story on endometriosis.

“I used to work but had to stop working because of the pains and challenges that came with endometriosis,” said the entrepreneur.

“I find it difficult to work because there is no place for people like me in this country. My cycle comes in three weeks.

“I don’t have up to 24 days in a month. Every three weeks, I have to take a break. Hence I had to go into personal business.

“My family members do not know what is going on. I only had to tell them the severity of the condition.

“I went to different hospitals and they said that l had fibroid. I did more than 20 scans and the result was that I didn’t have fibroid.

“At the end of the day, one of the hospitals categorically said that they would refer me to a hospital where fibroid surgery would be carried out on me.

“I was perturbed because the scan did not show that I had fibroid. I complained to everybody in pain but nobody could hear me out.

“On getting to the hospital, I was referred to do fibroid surgery. They checked my stomach but they could not find any fibroid or any symptom of fibroid.

“Before then, I had done many hormonal tests and had become tired.

“People told me I had been used for ritual. At a time, I was tempted to believe them, and I started calling people on the phone, telling them that l had been used for rituals.

“Finally, I went somewhere and the doctor listened to me. They told me to go and do a transvaginal scan. I did and the result showed that I had endometriosis.

“That was how I was diagnosed and I know that I have hope. It is a different ball game if you don’t know what you are fighting against. I know how to handle it now.

“I remember whenever I was in pains I did not know what to do. I was suffering. I could not work and I could not leave my house. I had to resign from my job.

“I want to advise women going through pains to seek a medical advice so that their problems can be solved on time.”

At the event, A consultant gynecologist and obstetrician and the Co-Founder, African Endometriosis Awareness and Support Group, Dr. Abayomi Ajayi, said the aim of the groups that are being supported by other groups across Africa – Botswana, Lesotho, Zimbabwe, Kenya, South Africa, Ghana, and Nigeria– is to raise awareness about the health condition among the people living with it.

He highlighted the major concerns about the condition as inaccurate diagnosis, dearth of trained medical personnel to handle it, and obsolete equipment used in medical facilities across the continent.

“For women living with this condition, life seems very unfair. The pain, the tough choice they have to make in determining if they would have children or not, their sexual life, relationship challenges, and general well-being should be of grave concern to all of us.

Ajayi, who is the Managing Director, Nordica Fertility Centre, added: “Up to 50 per cent of women who have this condition may experience infertility. Endometriosis cells secrete substances that affect the sperm and eggs. This causes progesterone deficiency in women thus preventing normal implantation.

“These implants are most commonly found on the ovaries, the fallopian tubes, outer surfaces of the uterus or intestines, and on the surface lining of the pelvic cavity. They can also be found in the vagina, cervix, and bladder, although less commonly than in other locations in the pelvis.

“Rarely, endometriosis implants can occur outside the pelvis, on the liver, in old surgery scars, and even in or around the lung or brain. While they can cause problems, they are not cancerous.

“Endometriosis affects an estimated 1 in 10 women during their reproductive years, usually between the ages of 15 and 49, which is approximately176 a million women in the world.”

Ajayi also noted that severe endometriosis is often associated with infertility due to the chronic inflammation which occurs as a result of the abnormally positioned endometrial tissue. All endometrial tissues, whether located in the womb or not, respond to the normal hormones that regulate the woman’s menstrual cycles.


Symptoms of endometriosis

The Nation learned that the Symptoms of endometriosis include pain, especially excessive menstrual cramps that may be felt in the abdomen or lower back, pain during sex, abnormal or heavy menstrual flow, infertility, painful urination during menstrual periods and painful bowel movements during menstrual periods.

Endometriosis, Ajayi said, can be suspected based on the woman’s pattern of symptoms and sometimes during a physical examination, “but the definite diagnosis is confirmed by surgery, usually laparoscopy.”

According to him, treatment of endometriosis includes medication and surgery for both pain relief and treatment of infertility, if pregnancy is desired.

It was learned that though endometriosis is associated with inflammation and immunological dysfunctions, it has not been proven to be an autoimmune disease.

On the diagnosis and management of endometriosis, Ajayi said a good clinical history and a thorough clinical examination with a high index of suspicion help to point in the direction of the correct diagnosis.

“To confirm the diagnosis, it is advised that the patient undergoes vagina ultrasound assessment and laparoscopy. A minimal access surgery that employs a keyhole camera procedure is considered the ‘gold standard tool.

“Laparoscopy also allows for classification of the extent of disease and histological diagnosis.

“Endometriosis can be managed either with the help of drugs or with surgery.

“The drugs used for the management are geared towards pain control and reducing the impact of the estrogen hormone.

“In those with mild to moderate disease, conception can occur spontaneously. Failure to conceive following six to 12 months of trying may necessitate help in the form of assisted conception treatments, mainly invitro-fertilization.

“Fertility treatment protocols must be tailored to the individual’s need to achieve the desired outcome. “Experience revealed that 25 per cent of patients undergoing Assisted Reproductive Technique are affected by endometriosis, and up to 40 per cent of these patients show ovarian endometriosis.

“During endoscopy surgical procedure at Nordica, endometriosis is the third commonest finding (15.7%) at laparoscopy. It is possible for those with endometriosis to live above the pain and achieve their desired goals and aspiration despite the condition.”

On how endometriosis leads to infertility in women, a consultant surgeon and gynecologist with Epe General Hospital, Dr. (Mrs.) Cynthia Okafor, said: “Endometriosis can influence fertility in several ways: distorted anatomy of the pelvis, adhesions, scarred fallopian tubes, inflammation of the pelvic structures, altered immune system functioning, changes in the hormonal environment of the eggs, impaired implantation of a pregnancy, and altered egg quality.

“At the time of surgery, your doctor may evaluate the amount, location, and depth of endometriosis and give you a score. This score determines whether your endometriosis is considered minimal (Stage 1), mild (Stage 2), moderate (Stage 3), or severe (Stage 4).

“This scoring system correlates with pregnancy success. Women with severe (Stage 4) endometriosis, which causes considerable scarring, blocked fallopian tubes and damaged ovaries, experience the most difficulty becoming pregnant and often require advanced fertility treatment.”

On the treatment, she said: “Endometriosis needs the female hormone estrogen to develop and grow. Birth control pills and other drugs that lower or block estrogen can be effective in improving pain symptoms.

“For patients who wish to become pregnant, medical therapy may be considered prior to attempts at conception, but this treatment usually does not improve pregnancy rates.

“The combination of surgical and medical therapy may be beneficial in patients attempting to conceive through in vitro fertilization (IVF). Overall, treatment is highly individualised for each patient.

The health intervention and programmes evaluation expert said “while it is important to seek government’s assistance with such projects, it is a call to duty for everyone to strengthen informal and formal groups that can tackle the issue of endometriosis awareness”, noting that “education, not income, is the best predictor of long life.”

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