For an incurable disease that affects over 176 million women globally, one would expect that so much noise would be made in sensitisation. However, this has not been the case with endometriosis for many years, especially in Nigeria.
The Endometriosis Support Group Nigeria (ESGN) embarked on the lonely journey some 10 years ago to sensitise and create awareness for care, treatment options and support for women affected with this cancer-like disease that causes extreme pain and possibly infertility.
The NGO, which is the first and only one focusing on this condition in Nigeria and even in West Africa, celebrated a decade of Endo Advocacy recently with a breakfast celebration, walk and interactive workshop at Abuja, Asaba and Lagos offices of Nordica Fertility Centre, which will culminate in the endometriosis worldwide march in Washington DC, United States of America.
According to lead medical consultant for ESGN, Dr. Abayomi Ajayi, endometriosis is an abnormal common condition. “Women should not suffer, go through this condition alone or told to shut up about it. We encourage them to come out to share their story, so that others can learn and appreciate the seriousness of the condition.”
He explained that it is time to break the silence of endometriosis.
“People should look out for it because it is there. Most of the time, it is mislabelled. If you are aware that it is something that can be solved, then you probably would have taken action when you were younger. It would not have resulted into not having children,” he revealed, as he advised doctors and patients to look well, so that a lot more diagnosis can be made.
Speaking on one of the misconceptions of the disease, he explained that there was a time doctors thought pregnancy could cure it, but with increased body of knowledge, they know better.
“There is a form of dysmenoria, which is just painful menstruation that pregnancy makes better. Now the two of them are not the same. I must say that it is better than when we started, when it was not diagnosed at all,” Ajayi posited.
Misdiagnosis, the first problem of endometriosis, is gradually being surmounted. Ajayi disclosed that most of the time, the condition is misdiagnosed, with so many women going through hell on earth. Some have been diagnosed to have cancer. The lucky ones had been diagnosed to have tuberculosis and have been on treatment for about two years.
However, in conjunction with their partners – Nordica Fertility Centre, teaching hospitals professionals in reproductive health – ESGN is making efforts to carry out large-scale research to impact positively on the lives of sufferers.
According to Ajayi, ESGN is taking the sensitisation programme to secondary and tertiary educational institutions and would have moved to the rural areas, but for limited resources.
For a journey that started a decade ago, the Endomarch country affiliate partner representative believes that, although they are not there yet, there is a silver lining in the sky as they are gradually getting the needed support.
“I guess it is what you know that you talk about, and that is why it has been a lonely path in the last 10 years. We can only thank people like the Diamond Woman that have been partnering with us in the last two years. It is getting better because there was a time we were the only one in East and West Africa,” Ajayi said.
There was also a commitment from the federal government, as the Minister for Health, represented by Dr. Olusegun Oyeniyi, pledged to aid ESGN through policy formulation, capacity building and technical support.
