Endometriosis is a condition in which tissue similar to the lining inside the uterus (called the endometrium) is found outside the uterus, where it induces a chronic inflammatory reaction that may result in scar tissue.
According to endometriosis.org, the condition affects an estimated 1 in 10 women and can start as early as a girl’s first period. Sadly, the lack of awareness and normalisation of symptoms result in late diagnosis.
Such was the case of Nollywood actress and media personality Zainab Balogun.
In a bid to create awareness of endometriosis, the actress took to social media to share her story.
The start of a journey of pain
When Balogun saw her period for the first time at the age of 12, she knew what it was and how to take care of herself. A few weeks before that day, she had been taught about menstruation at a sex education class in primary school.
The actress was, however, not informed that the degree of her period pain could be indicative of a health condition. Sadly, the arrival of Balogun’s period, became the start of a journey of pain which she describes as ‘out of this world.’
The pain was so strong that she would take some days off school. As she grew older, her work life was also affected.
“I’ve always had extremely severe periods and pains. My period would run for seven days and I mean seven days of heaviness, pain, clotting, severe, and serious cramps. I’m talking passing out in strange places, weeks off work/school and overdosing on painkillers daily type of trauma. This was the norm since I was a teenager,” the actress said.
On the days when Balogun had her periods, she would be bed-bound, bent over, and unable to do tasks as simple as having her bath and walking straight.
The media personality also always went through a week of ‘introductory’ pain that announced she was about to have her menstruation.
“So my pain would last for the week before the period comes, the week of the period and the week after because I would also suffer from ovulation pains. I would pass out from pain simply because my body will get to a point where it will just shut down.”
The actress recalled nights and days when the pain would run for 18 hours and would only be able to sleep for just two hours – it was in those two hours that she didn’t feel any pain. However, before she could sleep, she usually did a weird melodic routine with her teeth.
“It was like a sick lullaby that would put me to sleep because of the pain. I would grind my teeth together, groan, and make a noise and that noise will make me know when that pain was coming in or was about to leave.”
A cruel pain
Noting that the pain was not mere cramps, ache, or discomfort, the media personality defined it as vicious. According to her, her period pain was so strong; she could describe them with two things.
“It was like somebody would take a knife, stab me, and move the knife around. The second thing is that when I go into labour, it’s going to be easy-peasy because of the kind of pain I was able to handle. I would simply say it was like childbirth.”
Missing out of life events
Balogun did not only miss school because of her period pain, the fear of staining her clothes also kept her away. The media personality said there were days she used two pads at a time and went to school with extra clothing.
As she grew older, the actress resorted to using tampons but her flow was so heavy that they got soaked within the hour. According to her, that meant she couldn’t stay outside for too long.
“I used to make sure I had tampons and pads in every single bag in case my period says hello. I would buy suitcases full of pads and tampons so that I don’t run out of them because I hated my period. I had a hateful energy and attitude to my period. I hated the sight of the blood. I hated the idea because in that moment, I knew that my life was going to be at a standstill.”
As a result, she missed out on many occasions including her birthdays and family functions.
The media personality remembered missing her cousin’s birthday party due to her period pain. Left alone in the house, she had to manage the situation by herself.
“The only way I could relieve myself of the pain was to lay in the bath because it was cold. I would run water because it was somehow soothing. I would jump from the bathtub to the floor, and be groaning as I lay on the cold tiles. I would be flushed in my face you could just tell that blood was leaving my body.”
Misdiagnosed all the time
In a bid to understand what was happening to her, Balogun visited her doctor who diagnosed her with dysmenorrhea but the drugs prescribed to her were ‘useless.’
“I would throw them up the moment I used them. I would then go to the pharmacy and get ibuprofen and paracetamol. In a day, I would finish an entire pack of ibuprofen and dose up on different kinds of drugs just to help me with the pain,” she said, adding that she could not divulge other things she did just to manage her period pains.
Her doctor later suggested contraceptive pills to help manage the pain but the actress refused, saying she didn’t want to mess up her hormones.
A couple of years after that, the actress complained of stomach issues and her doctor said it could be irritable bowel syndrome. A stool test was carried out and she was told she had a few bacteria in her intestines.
Balogun avoided foods with pepper and started taking gastro pills before she ate anything but the pain didn’t stop. Whether she ate or not, her belly was always protruding. She also struggled with chin acne and mastered how to take them out.
“These were all signs of hormone imbalance and endometriosis that nobody was looking out for or anybody was talking about. That was me for 20 something years of my life, not being able to explain what was going on, being misdiagnosed all the time,” she said.
In all of these, Balogun said her period was always regular.
Unknown to Balogun, the journey to getting the right diagnosis for her pain started in July 2020 when she had two periods in that month.
Although she felt it was weird, she attributed it to stress. When the same thing happened in August that year, the actress became uncomfortable and decided to find answers to her questions.
She met a Nigerian gynaecologist, Dr Kemi DaSilva-Ibru, who told her some scans had to be carried out.
“She said we are going to take off all the different things until we figure out what it is. Is it a hormone imbalance, cysts or endometriosis? She said endometriosis is the last on the list that we try and look for.”
Balogun was referred to a radiologist who carried out a first scan but didn’t see anything that looked like endometriosis. The radiologist carried out another one called transvaginal ultrasound.
“And that was when he saw the cyst. One on my right ovary and another on the left. The one on my left was a bit bigger and it was about 10cm of the size of an orange,” she said.
“The one on the left was a torsion cyst and mine was hanging on my ovary, which meant it was applying pressure and pulling it down and because we don’t know what is inside, we had to take it out immediately because it could be anything.”
Surgery to the rescue
The actress then met a surgeon, Dr John Ojukwu, who gave her two options – an open surgery or laparoscopic – to take out the cysts.
Balogun went for the latter, which, according to her, is a procedure that entails inserting narrow tubes into the abdomen through small incisions with the aid of a camera to open and drain the cysts.
Still feeling sore from the surgery, she was drifting in and out of sleep when she learnt that she had been battling with endometriosis from her husband.
“I remember it was the first time I started crying because it was the last thing I wanted to hear because I remembered Dr Kemi said it was the last thing we were going to touch on. In that moment, I started to ask what I ate that caused it.”
Finally finding the root cause of pain
Balogun said it was after Ojukwu had tackled the cysts that he discovered during surgery that she had stage 4 endometriosis, adding that a widespread of endo cells and tissue were growing outside of her uterus on her diaphragm and liver.
According to her, endo cells are sticky, can gum organs together, and can most likely happen in the fourth stage.
“It can get to a point where they have to remove your uterus or fallopian tube or kidney or you have to wear a colonoscopy bag or find yourself not being able to walk.”
Although she was sad that she had endometriosis, Balogun was thankful that the cells did not grow in her fallopian tubes.
“I remember I was told that one of my ovaries may be removed if there were too much of the endo cells on it. My doctor, however, assured me that I would be able to have children even with one ovary.”
Balogun started treatment immediately with two rounds of Zoladex implants to breakdown the adhesions.
She described Zoladex as a form of treatment for endometriosis. According to her, the medication stops oestrogen from growing in the body as the endo cells feed on them.
“This left me in a state of menopause – without a period for one year.”
A painful recovery
Although the cause of over 20 years of pain had been discovered and taken out, Balogun described the pain she felt after surgery as deadly.
According to her, she had her last period after the surgery and she was in so much pain for two days that Dr Ojukwu had to stay awake for her.
“I am talking having to call the doctor and asking if I could take more co-codamol, if I could come back in, not sleeping and having the doctor be awake with us. I was bleeding and in pain and just finished having surgery,” she said.
The pain was so bad that the actress could not shower by herself or stand upright. She also had to stay away from foods that produced oestrogen.
The side effects that she had to face up to included lack of sleep, anxiety, depression, hair loss, and hot flashes.
“The first symptom I had was that my two boobs went from being firm to falling. They dropped and fell because I wasn’t producing oestrogen and I didn’t have that much collagen left in my body. I started getting a rash in my chest area that I couldn’t explain,” she said.
Balogun also dealt with weight loss, mood swings, bone pains, constipation, libido issues, brain fog, and vaginal dryness.
‘Severe period pain is not normal’
While expressing excitement that she finally has an accurate diagnosis for the 20-something years of excruciating pain she had been dealing with, Balogun educated women on some of the symptoms of endometriosis.
She said “painful sexes, finding it hard to urinate, bloating, vomiting, nausea, infertility, dysmenorrhea, cysts, digestive problems, period that lasts for more than 7 days, 20-something days,” could point to the condition.
The actress then urged women in pains to look for answers, saying it could take a long time to diagnose the problem.
“I want people to understand that there is nothing normal about severe period pains or hormone imbalances that affect the quality of your life. It should not be ignored. I’m encouraging women to seek answers for the little and big pains they feel. Is it a missed period, fibroids, heavy cycles, naval bleeding, hormone imbalance, fertility issues? Whatever it is, you can’t be afraid to pursue it for a healthier life. Don’t dismiss your pain ladies; get a gynaecologist that cares.”