When I met Hellen Malika, 37, she was standing in a long queue waiting to see her gynaecologist at Mwananyamala Hospital. Wearing a long red dress with a blue scarf on her shoulders, she waved at me with a warm smile.
She was attending her monthly clinic on endometriosis, a disease that affects millions of women across the globe. Hellen is one among other 176 million women living with the disease globally. Endometriosis is a condition resulting from the appearance of endometrial tissue outside the uterus and causing pelvic pain, especially associated with menstruation. As women living with endometriosis share their stories with Woman, global statistics show endometriosis affects one in ten women and the disease is diagnosed in women between the ages of 24-34 years, with 27 being the common age of diagnosis. Between 25 to 40 per cent of women with endometriosis are affected by infertility.
Hellen is a primary school teacher, married and a mother of one child, Eneka, 11. Due to her condition she has not been able to have another child however much she has tried to conceive for the past eight years.
“My journey with this condition has never been easy. I go through severe pain during my monthly periods, also, the cost of treatment is very high for someone with medium income,” says Hellen.
Five years ago she fell ill during her menstrual cycle. She had severe and strange pain, pain she had never experienced before.
She tried pain killers but none of them worked until she was taken to the hospital and got a diclophenac injection.
The injection helped ease the pain momentarily however two months down the road the situation remained unchanged. She decided to go for check up at the Muhimbili National Hospital (MNH) and she was diagnosed with endometriosis.
Dr Living Colman, a gynaecologist at the MNH, says in a week he attends to up to three women with endometriosis. According to the doctor, majority of women who attend his clinic have no idea of what could be the underlying cause for their illness even when all symptoms of the disease are laid bare.
How it happens
Dr Living states that endometriosis happens when some menstruation blood and tissue travels out through the fallopian tubes and enters the abdominal cavity.
In most cases endometriosis can appear anywhere in the body but usually found in the pelvis and in the lower abdomen.
Commenting on the cost of treatment, Living says treating endometriosis is expensive, costing up to Sh100,000 per visit. And every month a woman has to see her gynaecologist for check-ups and treatment.
Mentioning the symptoms of endometriosis, he points to severe pain during menstruation, pain during intercourse, pain with bowel movement, blood in the urine and pain in the urination and sometimes abnormal vaginal bleeding.
He says, endometriosis can be diagnosed when a doctor does surgery to check the abdomen with a camera through the belly button and takes a sample of any anomaly.
Laisa Abdalla, 35, is a woman living with endometriosis. She has been married for ten years now. In those 10 years she has gone for several surgeries in Nairobi but has never been able to get a child.
She says it all started with painful sensations during intercourse two years after her marriage and was later followed by severe pain during her menses. During that time, she has been trying to conceive, with no success. When the pain started she decided to visit her gynaecologist. “My gynaecologist suggested I should do some more checkups to see what could be the problem. He also mentioned something about endometriosis when he suggested for its check up. Since I was accompanied by my husband he suggested we should go to Nairobi together, he had to attend to other official matters as well,” speaks Laisa.
She says it was the hardest decision for her to make because she had just started her career at a certain bank in the city. But since it was a medical emergency then she decided to sacrifice her career and joined her husband for the trip to Nairobi.
While in Nairobi she went through surgery, she had hoped for prompt results after the surgeries owing to the doctor’s statement that she’d be able to conceive soon after the surgical procedure. Unfortunately Laisa hasn’t conceived to date.
“I have undergone several surgeries to the point that I have given up on having a child because we have spent a lot of money with no ray of hope,” says Laisa.
Julius Twoli is a doctor at Mwananyamala hospital. He says women living with endometriosis differ as some might not have same symptoms and after trying to conceive for so long without success one can be advised to do elective sterilization.
Between 1-7 per cent are diagnosed at the time of their surgery.
Adding to that, the doctor says that such a situation happens to women with strong immunity and some people are likely to get endometriosis if one has a close relative with the condition, it is also genetically caused.
Commenting on why endometriosis is connected with pain, he says, when blood touches the abdomen it causes pain and sometimes it can result to a scar tissue which also contributes to pain. Between 20 to 40 per cent of women with endometriosis go through infertility issues as fallopian tubes are distorted and become unable to pick up the egg after ovulation.
Rehema Said, 39, is a business woman at Kariakoo market. Endometriosis has been a very difficult journey for her to travel for the past nine years now.
She only has one child and has since decided to concentrate on her treatment, letting go of hopes of getting a second child.
She says together with her husband they’ve worked to make sure things become better for them but that hasn’t stopped money from pouring out of their pockets trying to deal with the condition.
Rehema has even made friends at the hospital she attends due to frequently meeting them at the clinic. “I have been living with endometriosis for the past nine years now.
After six years of trying to conceive with the help of medication, nothing has worked for me and I completely chose to ignore it. It is never an easy journey to any woman,” says Rehema.
She says she has been on medication for years now to ease her pain.
In order to deal with the pain, her doctor gives her medication that affects her hormones. The pills are called ibuprofen and gonadotropin.
Rehema had to come to terms with her condition, acknowledging the fact that she will never be able to have another child.
She calls upon other women out there who are living with endometriosis to focus on other things that define them as women since trying to get children while suffering from endometriosis can be very stressful to the point a woman loses herself in the process. She advises them to be hopeful but not put their entire focus on that or make their life stop trying to overcome the condition.