It was late in the night and Meera* was tossing and turning in her bed unable to sleep due to the severe stomach cramps. Biting down on her bedsheet to muffle her screams of pain, she clutched her stomach and tried to get up. Luckily, her husband woke up and quickly guessed what had happened.

Gently urging her to relax, he rushed to the kitchen, heated some water, filled it in a hot water bottle and placed it on her tummy. Encouraging her to take deep breaths, he tried calming her, hoping it would ease her condition.

This was not the first time Meera had been experiencing pain and although it was extremely severe, she put it down to painful periods – a condition nine out of 10 girls and young women experience, according to a 2018 Australian report.

But in Meera’s case, the pain she was experiencing was not near the uterine region – as is usually common in period pains – but rather in her upper abdomen, and despite consulting doctors, including gynaecologists, she found no relief. She was told her uterus and ovaries were fine, yet with every menstrual cycle the debilitating pain would recur, persisting even after her periods.

"When Meera met me three years ago, I suggested she undergo an ultrasound scan, but the reports did not reveal anything to be concerned about," says Dr Lakshmi Archana Kumar, specialist in obstetrics and gynaecology at Aster Clinic, Abu Hail.

However, after conducting another examination, the doctor suggested Meera take another ultrasound scan and instructed the radiologist to conduct a more detailed scan in a particular area of the patient’s abdomen.

"Based on the second ultrasound scan, we discovered that she had a rare kind of endometriosis on the rectus abdominis, a muscle in the abdomen," says Dr Lakshmi.

Endometriosis is a condition where a tissue, similar to that found in the inner lining of the uterus called endometrium, is found growing outside the womb – for instance on the ovaries, fallopian tubes, surgical scars or tissues that are away from the pelvic region as well.

Dr Lakshmi, who has more than 15 years of multinational clinical experience under her belt, says that to date, the causes of endometriosis – which affects one in 10 women worldwide – are still not properly understood.

Retrograde menstruation is one reason – as yet unconfirmed – that is believed to be a cause for endometriosis. While in a regular menstrual cycle, blood along with the inner tissue lining of the uterus is expelled from the body, in retrograde menstruation, the blood and tissue flows in the reverse direction through the fallopian tubes and get deposited in the pelvic cavity leading to extreme pain, discomfort and potentially serious health issues.

"Endometriosis can cause extremely severe pain and sometimes heavy bleeding. But it is often [dismissed] as just signs of heavy periods," says the doctor.

Many women believe that endometriosis affects only the uterus and ovaries. "But it can also affect other organs, the abdominal muscles and in extremely rare cases, even the lungs."

Severe abdominal or pelvic pain is often considered by many as a sure sign of endometriosis. "Again, this alone is not an indicator for this condition," says Dr Archana. In fact, some patients may have endometriosis but suffer little to no pain. In such cases, the diagnosis of this condition occurs incidentally during related medical procedures."

Another popular belief is that endometriosis will subside post menopause. "That too, unfortunately, is not true. The damage caused to the body by endometriosis can continue to trigger painful episodes even after menopause."

To get a better insight into this condition that affects millions, Friday spoke at length with Dr Lakshmi Archana Kumar.

Excerpts from the interview:

What are the symptoms of this condition?

The most common symptom of endometriosis is severe pain during menstruation. Normally, many women experience some pain during their menstrual cycle but in those with endometriosis, the pain is extremely severe and unbearable. They may faint, throw up, and have a heavy and/or irregular menstrual cycle.

Besides menstrual pain, a woman may also experience a constant, nagging pain without menstruation, termed as pelvic pain, or pain during bowel movements. This constant pain, fatigue and discomfort could even affect their psychological health. Those with endometriosis could also face fertility issues.

What causes the severe pain in those with endometriosis?

In simple terms, the endometrial lining is shed and expelled from the woman’s body during every menstrual cycle.

In a case of endometriosis, the endometrial tissue that is present in the fallopian tubes and ovaries also starts to shed in a similar manner. It could also result in inflammation and bleeding in these areas. Our body tries to heal or fix this by scarring.

Endometriosis can cause extremely severe pain and sometimes heavy bleeding, but many times these are dismissed as just signs of heavy periods, says Dr Lakshmi

To better understand that, imagine a cut to a finger. In this case, there will be some bleeding for a while before the cut heals and a scar forms over it. This is exactly what happens inside the body as well where healing occurs by adhesions. Adhesions are scar-like tissues which resemble a spider’s web. In some instances, these adhesions can cause tissues to stick to organs in the pelvic cavity, like the bladder, intestine or the ovaries. Initially, these adhesions are flimsy and can be easily separated or treated by laparoscopy. However, over time these can become dense and firmly affix themselves to the organs leading to inflammation and pain.

What are the risk factors for developing endometriosis?

Family history is one. If an individual’s mother or sister is suffering from endometriosis, there are high chances for that person to be diagnosed with endometriosis.

Increasing age, excess use of alcohol, early menarche and prolonged menstrual flow could also be risk factors, but I must say there is still no concrete evidence pinpointing risk factors.

How is endometriosis diagnosed?

A Specialist Gynaecologist makes the diagnosis in three systematic ways:

a. Clinical diagnosis – based on patient’s complaints and examination on table

b. Radiological diagnosis – using imaging techniques like USG and MRI, if needed

c. Surgical diagnosis – during laparoscopy/hysteroscopy/laparotomy where staging of endometriosis is done

To simplify, based on a patient’s symptoms and condition, the GP does a clinical diagnosis.

Next, the patient is asked to get an ultrasound scan done, which can help shed light on the kind of endometriosis she is suffering from. For example, endometriosis within the ovary forms a cyst, which is referred to as chocolate cyst or endometrioma. Endometriosis found within the uterus is called adenomyosis.

Since similar symptoms can also be associated with other health conditions like pelvic inflammatory disease (PID) or irritable bowel syndrome (IBS), a radiological diagnosis may not be sufficient. Hence, a doctor may opt for a surgical diagnosis.

What are the treatment options available for this condition?

There are a various treatment options depending upon the age, requirement as well as the stage of endometriosis. An unmarried teenage girl will be advised a different treatment protocol compared to an older, married woman who is suffering from infertility issues or a woman who has completed her family, but is still suffering from pain and/or heavy bleeding.

Does diet/lifestyle play a part in being susceptible to this?

They could have an effect, but it is still not proven. Exercising regularly, for instance, takes care of your fitness, weight and BMI. If these parameters are controlled, your hormones will be balanced to a large extent.

It has been found that taking steps to modify lifestyle like consuming less alcohol, maintaining a proper BMI through regular exercises and cutting out certain food products like dairy products can lead to improvement in the condition of those with endometriosis.

At what point should a woman consult with a GP with concerns relating to endometriosis?

If a woman’s menstrual pain is severe enough to disrupt or prevent her from carrying out her day-to-day activities, be it studies in the case of a student, or work in the case of a working woman or even household work in the case of a homemaker, this means the pain is not normal. In such cases, it could be endometriosis, although do keep in mind, it can also be a result of certain other conditions as well. A gynaecologist would be able to run a few tests and offer a proper diagnosis.

If a woman, a few months after undergoing surgery such as C-section, begins suffering from a pain that is not usually considered normal after surgery, or has atypical pain that increases in every menstrual cycle or coincides with the menstrual cycle, or experiences bleeding that is more than normal, she should consult her gynaecologist.

Dyspareunia is another medical concern a woman can suffer from and must also be checked with a GP.

What is the earliest age a woman can be diagnosed with endometriosis?

Sadly, today a lot of teenage girls are being diagnosed with endometriosis. Of course, once a teen reaches menarche, it takes a good three or four years to be diagnosed with condition. We have received quite a few cases of endometriosis in girls as young as 20 years.

Why do you think society is yet to open up and discuss this condition with the importance it deserves? Why are women reluctant to open up about their struggles with this condition?

Living in the 21st century, it’s upsetting to witness that women are still shunned or shamed when opening up and talking about their health issues and conditions pertaining to their reproductive system.

I believe there could be different reasons. One can be due to the fact that this condition is related to menstrual pain, menstrual flow and blood, which many people consider dirty and impure.

Another reason could be the fact that this health condition is invisible. So quite often, women are told many a times that the menstrual pain they are suffering from is just related to their periods and it’s "all in their head".

This medical condition can affect a woman’s physical, psychological and marital well-being and hence, many of them feel the need to hide it as they feel embarrassed about it.

I believe one way to change this mindset or at least bring about awareness is through education. Women at home like our mothers, grandmothers, aunts and even girls in school should be taught and be made aware that such a health condition exists. Teachers and mothers should listen to their wards/children and not just dismiss them when they complain about severe menstrual pain that is worse than normal.

Can you tell us how you treated your patient Meera?

Meera’s case was unique. She had endometriosis in her abdomen muscle. A plausible reason for this could be due to her caesarean delivery three years earlier. Caesarean delivery involves making an incision in the abdomen as well as the uterus to deliver the baby. After the incisions are closed, rarely, the endometrial tissue can spill outside the uterus. This is what could have happened to Meera. We believe the tissue could have seeped through the layers and deposited itself in the abdomen leading to endometriosis.

She underwent surgery; the rectus abdominis muscle was fixed and the tissue removed and sent for biopsy where it was proved to have been a result of endometriosis.

Meera is now happy and has gone back to living a normal pain-free life.

*Name changed to protect privacy

‘Awareness important to support women with endometriosis’

Endometriosis, says Dr Jennifer Kasirsky, consultant obstetrician and gynaecologist, Mediclinic Parkview Hospital, is when the lining of the uterus, the endometrium, gets outside of the uterus and implants in other parts of the body. Usually this is the ovaries and other pelvic organs. A woman should consult a gynaecologist when she has pelvic pain or heavy painful periods, the doctor says.

While eating right and exercise are an important part of any woman’s health, endometriosis is not caused by poor diet or health. Treatment for this condition usually involves medicines to control a woman’s period and pain management. In extreme cases surgery is needed, she says. An awareness that periods don’t have to be painful and that chronic pain can be treated, is an important step to support women with endometriosis, says Dr Jennifer.

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