Endometriosis: Misdiagnosed. Untreated. Painful.

CHENNAI: From being called hysterical and dramatic, historically, women’s pain has been largely ignored in the medical field. Notwithstanding the evolution of modern medicine, a woman with abdominal pain is not taken seriously unless she’s presented with more serious complications.

Well, it doesn’t get more serious than endometriosis, a painful condition in which the tissue, similar to the lining of the uterus (endometrium), grows outside the uterus, leading to inflammation, scarring, and adhesions.

According to the Endometriosis Foundation of India (EFI), endometriosis affects one in every 10 women (biologically born female) worldwide. That’s more than 200 million people globally, and over 25 million in India. Endometriosis is also a risk factor for infertility and is found in 1/3rd of cis-women seeking treatment for infertility for more than a year.

It’s one of the most under-diagnosed, misdiagnosed, and mistreated diseases, which, on an average, takes seven-and-a-half years to be properly diagnosed from the onset of symptoms such as painful periods, gastrointestinal distress, dyspareunia (painful sexual intercourse), painful bowel movements, and diarrhoea.

Surgery to diagnose

Doctors say that the first step to receiving successful treatment is a proper diagnosis. And, surgery, and commonly a laparoscopy, is the only option to know if a woman has the condition.

However, with limited resources to diagnose and treat, many women, who do get diagnosed with endometriosis, end up undergoing multiple surgeries, only for their symptoms to return.

The process of diagnosing endometriosis is complex and tedious. “First, initial testing requires a pelvic exam and an ultrasound. A physical exam can indicate the presence of endometriosis in the cervix, pelvis, and posterior thigh tenderness, which can radiate to the cervix at the rectal wall. Ultrasound or sonogram can confirm the cause of this tenderness. A rectal exam might be necessary to determine localised rectovaginal tenderness,” explains consultant obstetrician and gynaecologist Dr Aravind Santhosh.

With a laparoscopy, the gold standard for a diagnosis, a small incision is made for the laparoscope to go in and detect the lesions. The excision surgery is performed then to eliminate prolonged pain.

“Many patients with endometriosis undergo multiple surgeries, only for their symptoms to return. That’s because the surgeon leaves behind a considerable amount of scar tissue. Therefore, choosing an experienced surgeon with the right amount of expertise is crucial,” he pointed out.

Lack of skilled doctors

Even after getting a diagnosis, a lot of women do not find the right treatment because the resources for treatment remain limited, and not many doctors specialise in the same.

“Endometriosis requires a multidisciplinary approach and the public health sector has not devised a team for treating it. People are unaware of the illness itself, and even extreme cases don’t come to the government hospitals (GH) often,” said an obstetrician from a GH.

For over two years, Jayashree (26) had been vomiting, and suffering from extreme fatigue and pain, and also had a change in period-flow. “Doctors told me it was ‘normal period pain’ and suggested painkillers. However, it was so extreme that I couldn’t bear it,” she recalled.

Over a period of time, she consulted many doctors, all of whom suspected it was endometriosis but did not want to perform the surgery. “One of them said she couldn’t do the surgery because it was complicated. Another told me to wait it out, and a hospital told me that the best doctor has to come from Mumbai. So I travelled to Mumbai for the surgery, which cost me Rs 6.5 lakh,” rued Jayashree.

Many women hesitate to opt for surgery as many insurance providers in India do not cover diagnostic procedures; in case they do, the premium is very high. Also, even after a laparoscopy, there’s no guarantee of a diagnosis of endometriosis, as it’s an exploratory procedure to determine a diagnosis.

Recurrence of tissue growth

Dr Mirudhubashini Govindarajan, fertility expert and gynaecologist and obstetrician, at Women’s Centre by Motherhood Hospital, Coimbatore, pointed out that sometimes, symptoms begin when girls get their periods for the first time.

“If a teenager needs to be taken to a hospital almost every month during periods because of unbearable pain, it’s important to undertake medical interventions that go beyond a scan or an ultrasound,” she explained. “That’s because, in endometriosis, tissue growth is on the surface and can go unnoticed sometimes, even after an ultrasound or scan.”

However, when a laparoscopy is required, parents are not keen on it especially if their daughter is a pre-teen. “Only when the girl gets married and wants a child, she’s encouraged to undergo a surgical procedure because endometriosis also impacts fertility,” she added.

Even after the prolonged diagnosis and treatment procedures, there is no guarantee that the tissue growth causing endometriosis wouldn’t recur. Also, there are only limited measures known to address the recurrence. So, it not only takes a long time for a diagnosis, but the risk of recurrence always prevails.

Case in point is Xciba, a young photographer, who had to take a high dosage of painkillers and bed rest for 2-3 days while menstruating. Since her mother had severe pain during periods, it was believed to be a genetic issue.

“Only after the pain became very unbearable, I consulted 2-3 doctors. There were all kinds of tests, and I had checked with three doctors for more than three years,” she stated. “Though the menstrual pain was always there since puberty, it worsened in the last four years. It was then found that I had endometriosis and there was a growth of 2-3 chocolate cysts.”

It was during surgery that doctors found out about the fibroids. This complicated the surgery, which lasted for over 3 hours. It costs more than Rs 1.5 lakh to have the cysts removed but she was told about the risk of recurrence.

“I can manage the pain now,” she smiled. “I was told to have a baby as soon as possible as a relapse of the condition was a possibility.”

The Federation of Obstetrics & Gynecological Societies of India states that recurrence of endometriosis is reported in around 40-45% of women, of which 27% are re-admitted for surgery within 5 years, and just over a quarter would need 3 or more procedures. Therefore, there’s an urgent need to identify an effective means of preventing a relapse.

Concurring with this was a GH doctor, who added: “There’s medical evidence that lifestyle factors affect reproductive health and worsen symptoms. However, we don’t know for sure if a lifestyle-change would prevent a recurrence. Since endometriosis affects fertility, we advise patients to plan the pregnancy immediately after removing the cysts. It has been widely reported that hormonal impact of pregnancy slows down the growth of the tissues post pregnancy,” explained a GH doctor.