“I remember one time I was in so much pain and the principal wouldn’t let me leave. My mom came in and declared, ‘I’m taking my daughter home, she’s really not feeling well.’ The principal told her, ‘Your daughter is fine,’ but my mother replied, ‘She is in pain, I’m not letting her sit here!’”

Now 25, Tzipporah Berman started suffering from endometriosis at the age of 12.

Since her teenage years, pain has become a constant companion for Berman. She recalls crouching in a foetal position on the classroom floor.

“Sometimes I would wake up in the middle of the night because the pain was so bad and take painkillers, or I would take them in the morning on an empty stomach. The problem is that if you do that on heavy painkillers you end up vomiting,” said Berman, who is now a financial advisor.

What is endometriosis?

Endometriosis binds women together through a shared experience of pain and isolation.

While many women experience discomfort while menstruating, one in ten suffer from endometriosis. For these women, the pain doesn’t necessarily stop when the blood ceases flowing. Yet, the condition is often dismissed or not taken seriously.

According to Cape Town-based gynaecologist, Dr Natalia Navikova, endometriosis is a condition in which the lining of the uterus, known as the endometrium, grows in places that it shouldn’t. The tissue can spread to the bladder, the bowels, and even the diaphragm, causing a variety of issues such as irritable bowel syndrome and frequent infections. Endometriosis is also infamous for causing horrifically intense pain.

The debilitating impact of constant pain

“It feels like my uterus is wrapped in barbed wire and a thousand ninjas are inside it and each one is stabbing,” said Rechelle Heldsinger. At age 37 she has endured endometriosis for more than two-thirds of her life.

The unsettling description does not only refer to the few days during which she menstruates.

“It would start three days before my period and continue straight through ovulation. I would maybe—maybe—have a week off where there was no pain,” she said.

For many women with endometriosis, living on pain medication has become the norm.

Despite the additional health issues that can be caused by ingesting vast amounts of anti-inflammatories and other painkillers, the consistent consumption has led to shaming — even by those who are familiar with healthcare procedures.

“Having had endometriosis for more than 20 years, my body has become so used to strong painkillers like morphine and the medication I am prescribed is schedule six. But every time I go to pick it up, the pharmacist assumes my script is fake and calls my doctor,” shares Mishkaah Buffkins who runs the Foundation for Endometriosis Awareness, Advocacy, and Support.

“It is traumatising, because I am not a drug addict. I’m taking these pills because I really need them,” she said.

Healthcare system fails women with endometriosis

Buffkins’ experiences with disbelieving pharmacists are mild compared to the responses she has received from medical personnel like doctors and nurses.

“The young nurses don’t often have a lot of compassion. There have been times when I have been rushed to hospital at 11 o’clock at night after having a bad flare-up and the nurses will say to me, ‘Are you here again?’” said the Cape Town resident who relies on state hospitals like Groote Schuur and Tyberberg.

“Doctors also undermine your experiences with endometriosis. When I am in such pain, I will tell them that I need a morphine drip as that is the only thing which helps. I often get told by them that they have been treating endometriosis for five to ten years — but I am the one who has been living with it for twenty-plus years,” said Buffkins.

Twenty-nine-year-old Halima Ismail’s encounters with healthcare providers have been similar.

“I go to the ER with a little folder. I keep a little folder just to present to them, to help them a bit so that they don’t have to, you know, do a whole investigation. Here’s the file, understand what I have, and give me something for my pain,” she said.

The scepticism surrounding the condition extends beyond hospital corridors, and into the home.

Families even sceptical about the condition

“My mother-in-law kind of never believed my pain,” said Heldsinger.

Heldsinger had a hysterectomy last year, which took three hours to perform instead of the typical hour and a half due to. Her doctors told her the damage in her pelvis was so extensive, some of her organs had even grown together.

A hysterectomy “is a surgical procedure that removes your uterus through an incision in your lower abdomen,” according to the United States-based medical research organisation the Mayo Clinic.

“Your uterus — or womb — is where a baby grows if you’re pregnant. A partial hysterectomy removes just the uterus, leaving the cervix intact. A total hysterectomy removes the uterus and the cervix,” the clinic explained.

Heldsinger said that it was only after she had this procedure that her mother-in-law understood her historic pain.

“It was the first time in the 11 years that my husband and I have been married that she said to me that she’s sorry, she didn’t know it was that bad. So not only are we fighting doctors, we’re fighting people. A lot of people kind of see it as you’re seeking attention, which is not the case,” she said.

While the pain associated with endometriosis is undeniably physical, the condition also has a mental impact.

“We’ve had about four ladies in our group who tried to commit suicide within the last three years,” said Heldsinger, who founded the EndoWarriors SA support group.

Mental health impact of endometriosis

Heldsinger , like many others who face the daily battle with endometriosis, admits to dealing with mental illness as a result of the condition.

“I went into a very bad depression. I think after years of being told that the pain is in my head, you kind of start thinking it is. I’ve woken up once or twice, thinking, I’ll just take this whole bottle of pills, then I’ll end it for everybody. And for myself. It’s dark, and it’s lonely,” said Heldsinger.

Dr Rizwana Roomaney, a research psychologist at Stellenbosch University who specialises in endometriosis said that our “local research shows that women with endometriosis experience poor quality of life.”

“In a study of 202 South African women with the condition, we found that 43% reported moderate to severe symptoms of depression. Physical day-to-day limitations such as walking, feelings about the medical professionals, and sexual relationships were significant predictors of symptoms of depression,” she said.

Endometriosis not only causes pain during sexual intercourse, the condition also causes infertility in a large number of its sufferers.

Endometriosis can lead to infertility

“Women who have endometriosis might have difficulties conceiving because the inflammation it causes is not favourable to pregnancy,” explained gynaecologist Navikova.

The cruel irony, however, is that pregnancy prevents the swelling of the endometrium, which occurs during menstruation.

“Women may choose to go straight for fertility treatments such as IVF [to stop the pain], rather than progesterone medication like Visanne or an intrauterine device like the Mirena that stops periods in 70% of women,” explained Navikova.

In vitro fertilisation (IVF) is a “complex series of procedures used to help with fertility or prevent genetic problems and assist with the conception of a child,” according the Mayo Clinic. “During IVF, mature eggs are collected (retrieved) from ovaries and fertilised by sperm in a lab. Then the fertilised egg (embryo) or eggs (embryos) are transferred to a uterus.”

The longing for a child amid infertility struggles is another common pain for women living with endometriosis.

“My doctor suggested that maybe women with endometriosis shouldn’t go into teaching,” said Buffkins, who is a trained pre-school teacher.

“But the funny thing is, if I do statistics and surveys, the majority of the women who have endometriosis are teachers. It shows they have a passion for children,” she said.

Pressure to have children and endometriosis

At the age of 42 Kefilwe Ntshabele had a hysterectomy to alleviate her endometriosis symptoms. Since then, the biotechnologist had to put with pity or judgement from people when they learn she does not have children.

“I honestly lost count of how many people have offered to ‘take me to someone’ who can help me have kids when they learn that I don’t have any. People have made many assumptions. There are some who label me as the ‘modern-day career woman’ who cares about no one but herself, and others who think that I should just be a proper Tswana woman and bear children. It’s very sad really, because only a few want to know the actual reason why I don’t have kids,” she said.

The pressure to have children is common amongst many cultural and religious groups. Berman, the financial advisor who has lived with endometriosis since her teens comes from the Orthodox Jewish community. Her faith and culture place an enormous focus on having children and large families.

“It’s nerve-racking having to tell a guy that I may struggle to have kids. When a man gets married to a woman, there is always that risk of infertility. But when you go in beforehand, and you’re telling them upfront that there’s a problem, you don’t know how they’re going to react,” she said.

Fertility is still possible to those with endometriosis

Islam places a similar focus on having children.

“What I’ve witnessed is, if the female is unable to bring kids into the family, the guy is very quick to say, you know what, I’m going to get a second wife,” said Ismail, who is an administration clerk and member of the Muslim community.

Thankfully her husband of eight years was far more sympathetic.

“Before I got married, I explained to him that I might not be able to have kids. He was quite open. He said, ‘You know what? There’s adoption and other options,” she said.

But Ismail and her husband did not have to adopt in the end—she gave birth to their daughter three years ago. Yet, even this has been tainted by endometriosis.

“She hardly gets attention because most of the time I’m in pain,” Ismail says of her toddler.

The fears over how present she will be able to be for her daughter play heavily on Ismail’s mind: “If she goes to a debutante ball, I will need to be active and help her dress up and do other things. What if I can’t be there for her on that day because I’m in pain or bedridden? When she gives birth, I need to be standing next to her. What if I can’t do that?”

Still no cure for endometriosis

Despite the advances made in medicine, there remains no cure for endometriosis.

Although painkillers and hormonal treatments may help some get through the day, others opt for laparoscopies in which the painful tissue is removed. The surgery involves making an incision in the stomach and inserting a camera to identify the troubled tissue. Still, the operation does not prevent the tissue that causes endometriosis from growing again. It is not uncommon for women to undergo numerous laparoscopies in their lifetime.

“We have gynaecologists telling some of our girls to come every six months for a laparoscopy. Can you imagine what they’re going to look like inside with all that scar tissue after having to have a laparoscopy every six months?” asked Heldsinger.

On this International Women’s Day let us remind everyone what still needs to be done for those with #endometriosis #IWD2021 https://t.co/LXfjhSYGN3 pic.twitter.com/KuM1neDz4N

— Endometriosis.org (@Endometriosis) March 8, 2021

Novikova spoke of how COVID-19 impacted access to healthcare for women with endometriosis: “From April last year, we could not perform any elective surgeries. Many gynaecologists did not see patients who were not experiencing life threatening conditions. Once the hard lockdown lifted, some surgeons started operating but at a different pace, depending on the rates of the COVID-19 infection in their particular setting.”

Women urged not to dismiss the signs of endometriosis

While COVID-19 has made access to diagnoses and treatment more difficult, doctors still urge women of all ages not to dismiss the signs of endometriosis.

“We find that when women report the pelvic pain and heavy bleeding to people close to them these symptoms are often normalised and women do not further seek medical assistance,” explained Dr Roomaney.

Navikova concurred: “I wish people knew that painful periods are not normal, and that we can help them in one way or another.”

For the millions of women who experience endometriosis daily, help has come in connection. Support groups have created a format in which women can voice their queries and whisper their concerns without fear of judgement.

“Sometimes someone will share a random picture and it just lifts the spirits, especially on down days,” said Buffkins.

For Heldsinger, the solution lies in working together and listening to those suffering with endometriosis: “Each warrior has a story to tell. Don’t pity us; fight with us. All we need is support and someone to listen.” —Health-e News