She was first told that she could have tuberculosis of the bones or of the stomach yet it took Eve Lwasa five years of moving in and out of hospitals with unexplainable excruciating pain to finally ascertain what was ailing her.
“Since I started menstruating at 11 while in Primary Six, I always suffered terrible period pain to the point that I would miss school,” she says.
In 2013, she started working but all was not well.
“I started missing work because of terrible back pain, excruciating period cramps and painful legs. In search of answers, I went to a clinic and the doctor recommended that I go to Kampala Imaging Centre for a scan because my stomach was swollen. Although a number of doctors had always told me that the pain would eventually subside, the results showed a different story. After studying them, a doctor sent me to Case Medical Centre where I was told I had to undergo surgery,” Lwasa says.
The the idea of surgery was so alarming that she shelved it. However, a visit to her mother during Christmas break was the first push towards surgery. “Your stomach is swollen and your gait is twisted,” her mother told her. “I had unknowingly started to lean to one side while walking and because I did not want to worry my mother, I purposed to go for the surgery,” she shares.
In 2015, owing to the terrible pain, Lwasa went for another scan only to be told that she had fibroids and lots of water in her stomach. Her doctor once again urged her to undergo surgery. Heeding the warning, in November 2015, Lwasa went to Paragon Hospital and booked surgery. However, after tests, she was told she had a low blood count not to mention low weight (45kgs).
“I was given medicine to better my blood levels for the next two weeks although I was given an extra three pints of blood before surgery,” she recalls.
The surgery took close to six hours and Lwasa spent the next five days in hospital before she was discharged. She was allowed 37 days to recuperate but a week after resuming work, the pain returned. She went to see a doctor who gave her painkillers but even after taking them as directed, the pain worsened. One Saturday night, Lwasa called the doctor that had performed the surgery who advised her to come in for a scan, which showed that she had an eight centimetre cyst on the right ovary.
“On the basis of that, he advised for its immediate removal to avoid further complications and I was immediately wheeled to theatre,” she says.
However, this time, after the surgery, she had a draining bag on her right side and the catheter had not been removed. When the doctor came into her room, she learnt that she had several scars and that the bladder, colon and uterus were stuck together making it hard to see the cyst. More to that, the only available opening was bleeding and this had to be controlled before closing her up. The doctor also explained that the bag was meant to drain out liquid (ascites) from her stomach.
The bag was removed two days later while the catheter, which was there due to a perforated bladder as the doctor tried to find the cyst was removed 10 days later. While she was once again given time to recuperate, the pain in her stomach, back and legs returned. This time, it was coupled with painful bowel movement and indigestion. She could only take tea and porridge. Walking was also difficult due to low energy levels.
Lwasa started frequenting hospitals and infections became a common occurrence. “At one time, I had constipation, at another diarrhoea while at other times, I could barely pass stool. Every doctor had their own diagnosis and MRI scans showed nothing yet it felt like I was slowly losing my life.” One day, Lwasa felt the need to use the bathroom but due to the unbearable pain, she screamed so loudly that her workmates rushed to the door to find out what was wrong.
In November 2016, she went to Nairobi, Kenya, for further medical attention and was taken to Nairobi Hospital where she was admitted immediately. Different tests including a urinalysis and an ultrasound scan were carried out which revealed that she had water in the stomach and three litres were drained.
Then an MRI scan showed she had lots of stool in the colon. She was given two jugs of a salt mixture to clean her colon so that a colonoscopy (where a doctor looks inside your colon and rectum) and endoscopy (a nonsurgical procedure used to examine a person’s digestive tract) would be performed.
After the surgery, the doctor explained to her that her stomach was a web of things making it impossible to see anything. They proceeded to perform a laparotomy (a surgical incision into the abdominal cavity, for diagnosis or in preparation for major surgery).
Just like before, the bladder, uterus and colon were joined. “It was this that made bowel movement difficult so they tried to separate them and picked some tissue for further tests which revealed that I had endometriosis.
Lwasa learned that with endometriosis, the endometrium (the inner lining of the uterus) which is meant to be in the uterus is found in other body parts. The doctors said they did not know what causes it but presumed it was a hormonal problem and the endometrial tissues could be found anywhere although hers were attached to the colon, bladder and uterus.
Still in immense pain, she asked them about the way forward and was told there is no cure until a woman reaches menopause when the signs disappear. All they could do was manage the pain.
After 10 days, she was discharged and given medication, with the main one being Vissane, a hormonal medicine, she had to take once a day for the next six months.
“It put me in a menopausal state with hot flashes and no periods although I spotted for two weeks with a pause of one week,” Lwasa says. Reviewed two weeks after discharge, Lwasa was allowed to return to Uganda and resumed work.
However, once the medication got used up, the pain returned this time worse than before that she was advised to return to Nairobi for further treatment.
Back to Nairobi
In 2017, she went back to Nairobi for review and was given another hormonal therapy that was injected into her stomach and would last for six months. It had similar effects as Vissane but also came with anxiety and depression hence her sleep was usually affected to the point that she spent most of her nights watching movies and reading books. In November 2018, Lwasa had an opportunity to go to Nairobi for a training and used the time to also see the doctor who gave her another hormonal therapy, Zoladex which apart from the other side effects, gives her a constant dry mouth and headache. It is four months since the last dose of hormonal medicine and Lwasa is wondering what she will do next to control the pain.
During this journey, Waiting Wombs Trust, a group for women have come together to support each other and share ideas on the disease and its effects and how they can overcome some of them. “It was here that I heard about endometriosis excision where one gets reprieve from pain for five to 10 years. However, it is not done in Africa so I am still weighing my chances,” Lwasa says. She lives on pain killers but when the pain is too much, she goes for injections while she also gets plenty of rest on her days off.
12 years and no child
Editah Hadassa has also battled the condition for more than 10 years. She says it took about four years to get a diagnosis and she had excruciating period pain and painful bowel movement that she bled every time she passed stool. Hadassa’s first surgery results only showed cysts and fibroids but during her second surgery, she was diagnosed with endometriosis.
The surgeries continue and she had the third last year. “It took hours as the doctor was trying to figure out why my kidneys were hurting. Endometriosis was also found on my rectal area.
“Some days are easy but some are hard. I live one day at a time and being a Christian, I depend on God for strength every month,” she says.
Hadasa has been married for 12 years and is still childless. “We, however, do not allow this to put us down but instead use our experiences to encourage others,” she adds.
She also hopes that through her organisation, Waiting Wombs Trust, which she started in 2016, information about the disease will reach as many women as possible. “I do not want anyone to go through this kind of pain. This is the reason we are using our voices to create awareness, reach out and support,” she concludes.
Surgical treatment can be undertaken. He says this can be either laparoscopically or open laparotomy where the abdomen is cut open. Normally after the surgery, Dr Kireki says some of the hormonal medications can be prescribed for a period of three to six months.
One of the other methods of treatment is to encourage the patient to become pregnant because, “during pregnancy, the ovaries are not working and whatever endometrial tissue that might be lying somewhere is completely suppressed and the immune system can destroy it.”