• Group traces 40 per cent of infertility cases to gynaecological disease
• Endosurvivors recount their ordeals, create awareness

As the struggle for survival in the present economy continues, basic needs are now mostly unaffordable, even as the burden of basic menstrual hygiene products overwhelm many women today due to affordability concerns, while consequently increasing period poverty in Nigeria.
    
With little or no awareness of endometriosis, a gynaecological disease affecting 10 per cent of women globally, thousands of women continue to suffer in silence, both the physical and psychological trauma that is associated with the disease.
   
While most Nigerians continue to attribute infertility to spiritual problems and resort to prayers instead of seeking for medical attention, the public and most frontline healthcare providers are still not aware that distressing and life-altering pelvic pain is not normal.
    
Endometriosis is a disease in which tissue like the lining of the uterus grows outside the uterus and this can cause severe pain in the pelvis and make it harder to get pregnant; it can start at a person’s first menstrual period and last until menopause. It is a complex disease with variable and broad symptoms therefore making it difficult for healthcare providers to easily diagnose it.

    
According to the World Health Organization (WHO), the cause of endometriosis is still unknown and there is no known way to prevent it. It has no definite cure yet, but its treatment is mostly aimed at controlling the symptoms or, in some cases, surgery. Many knowledge gaps exist, and there is need for non-invasive diagnostic methods, as well as medical treatments that do not prevent pregnancy.
   
Endometriosis which most times, comes with chronic pains can affect girls/women throughout their reproductive age and sometimes afterwards and some of the common symptoms of the disease are severe or chronic pain in the pelvis especially during their menstrual cycle, heavy bleeding during or between periods, bloating, nausea, fatigue, depression or anxiety and trouble getting pregnant.
   
There is a lack of multi-disciplinary teams with the wide range of skills and equipment needed for the early diagnosis and effective treatment of endometriosis especially in low and middle-income countries such as Nigeria. Access to specialised surgery for those who need it is sub-optimal and largely expensive, while tools to screen and accurately predict patients and populations who are most likely to have the disease are lacking.
    
Period poverty remains largely unaddressed in Nigeria with over 37 million women/girls who can barely afford their monthly sanitary products. The rise in sanitary products has escalated over the roof in recent time, driving a lot of women and young girls to start using unhygienic products during their periods like tissue, rags amongst others which ultimately leads to infections and in worse cases infertility.
   
To commemorate International Women’s Month and raise awareness on Endometriosis and the importance of early diagnosis, Endosurvivors International Foundation (ESIF) organised a five kilometre walk in Lagos, which was tagged; “Walk&Cycle4Endo” to educate the public on the disease. Through the programme, ESIF is advocating for improved quality of care for patients and providing support to endometriosis patients in Nigeria.
   
According to the organisation, Endometriosis is a leading cause of infertility all over the world and about 35 to 40 per cent of infertility cases may be caused by the disease in Nigeria. Some of the members of ESIF and survivors of Endometriosis spoke to journalists and recounted their ordeal and experiences prior to diagnosis and their current pain management treatments.
     
Nkiru, a 27-year-old survivor and a member of the ESIF narrated her experiences with the disease and how she emerged a survivor. She told The Guardian about the misdiagnosis she had at first, accompanied with a couple of surgeries before a proper diagnosis was made.
  
She said: “Normally our period comes with pain but the first time I experienced severe pain was 2013 and it was unexplainable, and I was taken to the emergency unit. They first realised I had a cyst that was almost ruptured, and I had to undergo an immediate surgery. I had never heard of endometriosis and in the space of one year, I had another cyst; I had my first surgery in September and another by July and that was when they realised I had endometriosis.”
   
Nkiru, who also highlighted the negative impact of the disease on her professional life. “I work in an office and whenever I am menstruating, everyone would know; from the security man to everyone in my office. So, I will take like two days off from work to go to the hospital and coming back from the hospital usually feels like thongs are placed around my belly and most times I won’t let anything, not even clothes, touch my belly.”
   
Speaking about the impact it has made in her personal life, Nkiru said “it affected her love life, and she lost a relationship due to the constant crisis that came with having endometriosis. She said, “I lost a relationship because of endometriosis, I think he left me because I was always having a crisis, and everyone was scared that I won’t be able to have children.”
  
“My gynecologist would always tell me that once you are in a serious relationship, you should be able to tell the man you are dating your situation and if he is going to support you, he will be there. Endometriosis is not a killer, and some people will tell you that you might not have children but that is all a big lie because people with Endometriosis conceive; it might not come easy but you are a survivor.”
   
Nkiru also points out how the love and support she gets from her family has been a huge part of her survival story, “It has also given me genuine love because my family and friends also support me and they understand where I am coming from and would go through hell and high waters for me,” she said.
    
Another survivor, Olufunke Adeboje explained that the hospital at first suspected infection before she was eventually diagnosed with endometriosis. “The experience was bad and painful, and I couldn’t sleep most nights whenever I was on my period. I couldn’t hold myself due to the pain. I managed to get myself to the hospital and after several texts, they thought it was an infection until a gynecologist asked me to do some more tests and found out that I had Endo-Ovarian-Cyst,” She said.
    
The 37-year- old Adeboje revealed that despite undergoing two laparoscopic surgeries, she continued experiencing severe pain during her period. She said: “The doctor then told me I had to undergo surgery but then being a Nigerian, I tried to avoid the surgery and kept on taking drugs, but after the surgery, the pains got worse.
  
After my first surgery, the doctors discovered they did not get to where the cyst was and so they booked me again in the space of a week to undergo another surgery. Even after the second surgery, the pains continued, and I continued going to different hospitals until I went to Federal Medical Centre Ebute-Metta and that was where they took my issue up and placed me on drugs which offered me a great deal of relief from the pains and I’ve been managing those pains with those drugs till date.”
   
A laparoscopy is a type of keyhole surgery used to diagnose and treat conditions. It allows a surgeon to use only small cuts and a camera for procedures inside the tummy or pelvis. It is often done when the results of a physical exam, X-ray, or CT scan are not clear.
   
A representative of Society of Gynae and Obstetrician of Nigeria (SOGON), Lagos Sector and Consultant Gynae and Obstetrician at Lagos State University Teaching Hospital (LASUTH), Dr Modupe Adedeji, emphasised the importance of awareness to help disseminate and debunk the myths surrounding Endometriosis.
    
“Awareness is important and should start from the girls’ first menstruation. Pain can come with it, and everybody will be saying it is normal and the person will continue to live with it until she finds out it disturbs her normal activities,” she said.
  
According to ESIF, the disease management varies from woman to woman and so the NGO aims to stimulate treatments to suit patients individually, as well as provide support to help each patient manage their reproductive health.

WHO is partnering with multiple stakeholders, including academic institutions, non-state actors and other organisations that are actively involved in research to identify effective models of endometriosis prevention, diagnosis, treatment, and care; they are also pushing for adoption of effective policies and interventions to address endometriosis, especially in low- and middle-income countries.