Endometriosis diagnoses still a rare commodity
People who suffer with endometriosis face inordinate hurdles in accessing care for their condition, but believe they are warriors despite a medical system that doesn’t always believe them, writes Dalaine Krige.
“By 17 I was experiencing nausea, vomiting, insomnia, excruciating pain in my pelvic area and sharp pains in my bowels that would stop me dead in my tracks,” says Natanya Voutsinos.
“I was told to relax and stress less, says Voutsinos, a 31-year-old tax and secretarial consultant. She has been living with endometriosis since she was 15-years-old, when her symptoms first started.
People like Voutsinos – who suffer from endometriosis – describe themselves as warriors.
“We thought the stomach cramps and bad periods were age and stress-related,” she says. “I was always tired and couldn’t focus on schoolwork. The doctors ran some tests and I was put on iron pills for anaemia,” explains Voutsinos.
She was diagnosed with Irritable Bowel Syndrome (IBS) and told to make radical changes to her diet. After about two years with no improvement, her menstrual cycles were debilitating, and her chronic fatigue meant that she often had to miss work.
In 2018 she told her gynaecologist that she thought she had endometriosis. “My doctor shrugged it off and said I don’t, that I just have ovarian cysts and possibly PCOS.”
Two months after this doctor’s visit, she woke up screaming with pain. “I have never felt pain like that in my life,” she says. “I could not walk, I could not sit, I didn’t know what to do. I was rushed to the ER where they did scans and found three uterine fibroids.”
Her doctor had not picked these up during their consultations and scans.
During surgery to remove the fibroids, the doctor found extensive lesions caused by endometriosis all over Voutsinos’ pelvis, as well as on and inside her bowels. Her right ovary was twisted and stuck to her bowels and her left ovary was severely damaged. Recovery from the surgery took three months.
Racial and gender bias
According to Dr Francois Retief, obstetrician and gynaecologist, endometriosis is the condition where endometrial cells or tissue are found outside of the uterus. The endometrium is the lining of the uterus and is specialised to allow a pregnancy to implant and grow.
“During menstruation, if pregnancy has not occurred, the endometrium breaks down in preparation for a new cycle,” says Dr Retief. “This is an inflammatory event that is safely contained inside the uterus. However, the endometriosis tissue outside of the uterus also undergoes this cycle which results in inflammation and pain.”
Finally, after 16 years, Voutsinos received her diagnosis: Stage 3 endometriosis, Fibroids, Polycystic Ovarian Syndrome (PCOS) and anovulation.
In a society where women’s pain is not taken seriously and an endometriosis diagnosis takes years to be made, Voutsinos feels that the medical community needs to be more proactive in their treatment approach to avoid these diseases as well as improving the screening process.
“If it was a man’s illness 100% there more would be done to diagnose and treat this illness earlier and better treatment. If it affected everyone, more would be done about it.”
Dr Tlaleng Mofokeng, a sexual and reproductive health doctor explains that medical research is still racially and gender biased.
“There isn’t as much money going into female reproductive health research as you have with male sexual dysfunction, comparatively.” This, she notes, is why the research doesn’t always move as fast.
Retief explains that the stages of endometriosis are determined by a scoring system based on the size and number of endometriosis deposits and adhesions in different areas of the pelvis.
“This system was developed to try and predict the likelihood of spontaneous pregnancy, and to assess the fertility response to different treatments in these women,” he explains.
‘A daily struggle’
Voutsinos has taken her health into her own hands and believes she has cured her PCOS by following a very strict ketogenic diet.
Today she still struggles with severe endometriosis, daily pain and infertility. Her ovaries are damaged from years of undiagnosed endometriosis.
Mofokeng notes that this is a common problem in women who have lived for years with undiagnosed endometriosis. Inflammation, when left unchecked, can wreak havoc on your pelvic floor.
“It is a daily struggle to overcome the side effects such as anxiety, pain and chronic fatigue,” says Voutsinos. “Each day is a battle to do basic chores, work and keep up communication with family and friends.”
“I am in some sort of pain three out the four weeks of the month. Sometimes I have moments that I break down and I feel like I cannot cope anymore due to the pain and exhaustion, but I get up and push harder.”
Portia*, a 24-year-old hailing from KwaZulu-Natal, is currently working towards her PhD in the United States, and calls her journey towards receiving her endometriosis diagnosis “traumatic”.
“Growing up, the horrible and excruciating pain that I felt was normalised by my family and peers,” she says. She was told to take pain medication and stay active, even when her legs would swell up and she could barely function. She would finish a box of pain medication each week.
“The scariest memory I can recall from my first hospitalisation occurred during a final matric exam,” she says. “I had been feeling very nauseous that morning and my mother said it was just anxiety so I went ahead to go write.”
“However, midway in the exam I kept feeling a stabbing pain in my stomach and my lower abdomen was on fire. I kept trying to ignore it until I couldn’t breathe and fainted.”
She woke up in hospital and her doctor told her that she had lost a lot of blood from menstruating. Her doctor diagnosed her with dysmenorrhea – painful cramps during menstruation – but in university she decided to seek out a specialist.
“This gynaecologist suspected endometriosis but said I could be exaggerating so she placed me on birth control instead,” says Portia. “After a year of trials with different medication there was no change and I was hospitalised multiple times for pain and other symptoms.”
A different gynaecologist in KwaZulu-Natal dismissed the chances of operating or referring her to someone else, and placed Portia on Visanne, a popular medication to treat endometriosis.
“The side effects were unbearable and I still had to rely solely on Tramadol and other medication in order to function,” she says.
Eventually, Portia saw a specialist in Somerset West. “He did something so phenomenal before even operating and that was to believe me,” she says. “He believed that I was actually in pain.”
Portia was diagnosed with stage 3 endometriosis which he located just behind her bowels during a laparoscopy.
Black women not taken seriously
Mofokeng states that there are no official statistics on endometriosis in the public sector. “I know for sure that patients’ lived experiences are true – it can take a long time for people to be believed about their pain,” she says.
“It was so difficult to hear him when he told me the diagnosis after the operation, it felt surreal, although I had expected it,” Portia says.
This condition has made it difficult for Portia to form romantic and sexual relationships. “I am always torn between explaining my condition and expecting people to know enough. Whenever I have told someone about my condition, the conversation almost always goes to his worries of fertility and what it means for sex.”
Portia wishes she had known that she is not alone in this confusion and suffering. If she had known more about the condition, she feels she would have pushed harder for a diagnosis.
“As a black woman, I definitely do not think the medical fraternity takes such issues seriously,” she says. “A gynae that I saw once told me that they would not place me on contraceptives because the best solution for my pain would be to fall pregnant and let nature handle the rest.”
Public healthcare strained
According to Retief, the biggest obstacles in state hospitals are resources, as there is a shortage of specialist gynaecologists.
“In both state and private hospitals, the obstacles are a lack of knowledge and training, and healthcare workers not being aware of the referral system that is available for these women.”
Mofokeng echoes this and adds that the level of corruption and maladministration in the public healthcare sector complicated the treatment process.
“If you have that much of a dysfunction it frustrates the entire system and all of the people involved. Unless we get leadership in these places that actually know what they’re doing and understand and use evidence-based research, the expectations we have are going to be beyond what the old archaic medical system can provide.”
She explains that one of the consequences of the lack of accountability is a waiting list of up to four years for a laparoscopy in a public health care system.
However, Retief wants women to know that endometriosis is a treatable disease. “There is specialist help and treatment available and that if you have pain, it is not all in your head.”
Mofokeng urges women to keep a diary of their symptoms and advocate for themselves when seeing a doctor. – Health-e News