Endometriosis affects an estimated 25 million women in India and causes debilitating periods, chronic pelvic pain and fatigue. Yet, research around the condition remains scant.

How women with endometriosis often live in silence and pain
Delve Women's Health Wednesday, August 14, 2019 - 16:37

Lakshmi Sharath has always had agonizing, heavy periods, with shooting pain in her abdominal area, though she believed it was because of gastric issues. “The pain has been a part of me for most of my life,” she says. However, 10 years ago, she found out the real reason when a follicle on her ovary ruptured: Endometriosis. 

Since then, Lakshmi has tried almost everything to deal with the condition: birth control pills, intrauterine devices (IUD), and four surgeries to get rid of the fibroids and cysts that formed due to the condition. “My body went through hell. My personality changed – from being a strong, aggressive, and ambitious go-getter, I became an anxiety-ridden, pain-ridden person who’d break down often,” she says.

Endometriosis affects an estimated 25 million women in India and significantly impacts their quality of life. Debilitating periods, chronic pelvic pain, and fatigue are some of the physical signs associated with it. It takes an emotional and mental toll too, often causing patients to develop anxiety and/or depression – because of the nature of the disease and the complications it brings, or because of hormonal medication. “People who do not have endometriosis will never understand,” Lakshmi says.

Despite its prevalence, there is little awareness about the condition, and patients are often not given the right medical care because of lack of expertise and societal taboos.

What is endometriosis?

In endometriosis, a tissue which is like the endometrium that lines the inside of the uterus is found outside of it, and even on other organs. It produces inflammation and scarring leading to adhesions between organs --  links which cause organs to stick to each other. An example of this is ‘kissing ovaries’, where the ovaries get stuck to the uterus.

Endometriosis is classified into four stages, and can vary from mild to severe. It can also lead to infertility in some cases.

Though research on causes of endometriosis is scant, there are a few possible causes for the disease including genetic predisposition and retrograde menstruation, where some of the menstrual blood goes back into the body through the fallopian tubes. However, while retrograde menstruation is popularly believed to be one of the common causes, there has been research that shows a large number of people who menstruate have retrograde menstruation, but most of them do not present with endometriosis. In many circles, this has now been discarded as a possible cause for the disease. Ultimately, the cause(s) for endometriosis is fraught with debate.

Diagnosis and delay

Anna*, a Kerala native based in Mumbai, learnt that she had endometriosis after the birth of two children, when a scan picked up a big ‘chocolate cyst’ on her left ovary and several on her right one. A chocolate cyst is one that is filled with menstrual blood tissue.

“I always had very painful periods,” Anna says, but doctors kept telling her this was normal, and she just had a ‘low pain threshold’. When she was in college, she would ask someone to check on her in the toilet if she didn’t come out in five minutes, because she may have passed out from the menstrual pain.

Like Anna, most women said they were often told to just deal with the pain, leading them to assume that it was normal. However, Dr Abhishek Mangeshikar, an endometriosis specialist, says, “Parents must listen to tell their child when she's complaining of period pain so bad that she wants to skip school, instead of thinking she is malingering.”

Studies show that endometriosis is usually diagnosed a little over six years after symptoms first start to show, although estimates vary. “Both patients and clinicians contribute to the delay in the diagnosis of endometriosis: Women are often reluctant to report the severity of their pelvic pain symptoms, and clinicians often under-respond to a patient's report of severe pelvic pain symptoms,” one report states.

Mindfulness instructor Sarabsri, for instance, was diagnosed only after marriage. “The doctors only started checking if my uterus was fine once I got married. They wanted to check from the viewpoint of fertility. Otherwise, no one wants to know about your heavy periods and discomfort,” she says.

There has been little clinching evidence on why some women develop endometriosis, and the diagnosis and treatment available is troubling for a disease that was discovered in 1860. 

Dr Hema Divakar, a Bengaluru-based obstetrician and gynaecologist, says that the gold standard for diagnosing endometriosis is laparoscopy, a process where an instrument is inserted into the abdomen to examine organs or perform minimally-invasive surgery. In younger people, doctors say the pain won’t be attributed to endometriosis until evidence is seen in an ultrasound scan. Even still, it may show unless there are adhesions or chocolate cysts.

However, Dr Abhishek, who specializes in excision surgeries (procedure where endometriotic cysts are surgically removed) says that sometimes signs may show up early – he has operated on patients as young as 11.

‘Cure’, but not really

Sarabsri believes she could have received help much earlier, but outdated notions of virginity hampered a timely diagnosis or effective treatment. Her mother refused a transvaginal ultrasound, recommended for Sarabsri when she was a teen, because of the device that is inserted into the vagina for examination. 

For Bengaluru-based human rights lawyer Urmila Pullat, 32, tests deemed “intrusive” were also denied by technicians despite prescription.

One of the biggest myths surrounding the disease is that pregnancy makes it go away. Patients report being routinely by doctors that they must have children soon, because the disease affects fertility.

Urmila was told to have children at the age of 20. She was even denied the option to surgically remove endometriotic cysts because there was a chance it could reduce her fertility. “I was clear I did not want children. I just wanted to live a normal life that didn’t involve me pumping myself with painkillers and having to take leave from college every month,” says Urmila.

Dr Aruna Muralidhar, a senior obstetrician and gynaecologist at Bengaluru’s Fortis La Femme, says that the process for treating endometriosis is to use hormones such as progesterone to suppress periods or control the bleeding using birth control pills. “We can give painkillers, but that won’t stop the disease’s progression. Increased intake of painkillers over time can also affect the stomach lining and kidneys,” she says. Apart from hormones and painkillers, patients may be prescribed progesterone therapy through injections or IUDs too.

A thread among the women TNM spoke to was that they were prescribed drugs that induced menopause temporarily to stop menstruation in an attempt to control endometriosis, and brought all the symptoms of menopause with it — hot flashes, mood swings, fatigue and so on. For Anna, one such drug called Leuprorelin made her depressed and anxious. “I had terrible phobias, like I would die if I drove. I felt like I was going crazy,” she says. 

Dr Hema says that this treatment is outdated, and is only prescribed when an IUD is not an option or doesn’t work. However, women often do not have full agency in choosing their treatment. Urmila, for instance, was denied an IUD by one of the many gynaecologists she has visited because she was unmarried.

Endometriosis patients may also present with adenomyosis, a condition where the endometrium grows within the wall of the uterus, which is found to co-exist with endometriosis in 30-35% of cases. Having both conditions also makes it harder to treat.

The last resort for patients is the surgical removal of the uterus, known as a hysterectomy. But, this too is not a foolproof solution if the disease has spread to other organs. The pain may continue to persist. “So, while hysterectomy may resolve adenomyosis, it is not always necessary that it will solve endometriosis,” Dr Abhishek says.

There is a possibility that endometriosis can be cured with laparoscopic surgery — an excision to remove cysts and adhesions. “You have to be very thorough with it because then, with as much disease as you leave behind, you are going to increase her chances of having another surgery,” Dr Abhishek says.

Effect on daily life, relationships

Sarabsri used to run a mindfulness clinic in Bengaluru which she had to shut down because of her endometriosis. She soon found herself unable to sit for long and developed low-grade fever by the end of the day. “I realised I couldn’t do a regular job. My career almost came to an end,” Sarabsri says.

Patients’ social lives also take a hit: plans are cancelled, anything avoidable is off the schedule, and it’s not just the period days that are hard to endure. Urmila, who describes endometriosis as “a cumulative chronic stressor,” says, “I was tired throughout. The run-up to those days and even recovery after that is difficult.”

Due to the nature of medication and the disorder itself, endometriosis takes a toll on personal relationships too, physical intimacy included, as it may include pain during sex. “The endometriotic spots tend to irritate the nerves and cause local inflammation. That makes the pelvis sensitive, so penetration becomes painful,” Dr Aruna explains.

A woman who has endometriosis told TNM that the mood swings due to the hormonal medication along with the inability to have and enjoy sex because of the pain deeply impacted her sense of self. “It took a long time; he (my partner) helped to make me feel less attached to the expectations I had from myself sexually, and its effect on my self-image,” she says.

Meanwhile Deepika*, a 25-year-old Mumbai-based copyeditor, has held back from dating altogether. “I have never had sex, so it’s not yet been a concern. But endometriosis is one reason why I choose not to pursue relationships. I'm not ready to face it,” she says.

This affected, and eventually, played a role in the failure of Sarabsri’s first marriage too. “You cannot have a normal sex life. There are going to be weeks when you’ll be down. Your disease will decide what you can do and where you can travel. My disease and my ex-husband’s response to it made me realise that we couldn't work,” she says.

However, support from Sarabsri’s current partner has made all the difference. After facing fertility issues, they decided to discontinue treatment, and adopt their second child.

If there was one common story among all the women, it was that their pain had been dismissed. The bias is apparent in research on women’s health and endometriosis too.

“It's a disease that has the same incidence as diabetes. Everyone you ask has heard of diabetes but no one would have heard of endometriosis unless they are doctors. This disease doesn't affect men, so all the research funding was never sent to endometriosis, but other diseases. It never got its due. Now, there is research money coming in, so some people are studying it,” Dr Abhishek points out. 

And though it may be getting more attention now, the lack of understanding and research has meant that women living with endometriosis have had little to bank on except an individual doctor’s judgment and expertise to manage their disease.

Sarabsri, for one, was planning to go ahead with a hysterectomy when she spoke TNM, despite knowing that it might not rid her of endometriosis. She is part of several online groups , which is often the only place patients can find solace and stories similar to their own.

“We are diagnosed very late, and there is no complete treatment. I am going to have a hysterectomy but I am very scared. My doctor has told me that there is no guarantee that it will get rid of the pain. But with a heavy heart, I am doing what is available to me. I cannot suffer anymore,” she says.  

Note: An earlier version of this story referred to the tissue that lines the outside of the uterus in the condition as the 'endometrium.' It has been amended to say it is an endometrium-like tissue. An earlier version of the story also referred to retrograde menstruation as a possible cause for endometriosis. The story has also been amended to include research that disputes retrograde menstruation as a potential cause for the condition.

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