Everyone told Ajanta that her pain was normal. It began when she was in her early twenties, and would last for two-and-a-half weeks every month, starting a week before her period, and extending a week after. Throughout, she would suffer from nausea and vomiting. During her period, the pain was debilitating, and would leave her unable to do basic daily activities, often even forcing her to take a leave of absence from work.

Even her gynecologist told her it was nothing unusual. “You see, with sugar, blood pressure, or cardiac issues, there is a way to measure the level of its severity,” said Ajanta, who is now 33. “But there is no way to quantify pain.” (She asked to be identified by a pseudonym for this story.)

About two years later, she came across a disease online that she had not heard of before: endometriosis.

Instantly, she suspected she might suffer from it. Endometriosis is a disease that affects 10% of women across the world, and in which tissue similar to that which lines the uterus starts to grow outside it; the same tissue can also spread to other organs. It can lead to adhesions or fibrosis, both conditions in which clumps of thick scar tissue form between two surfaces, causing them to stick together. Endometriosis is classified into four stages, starting from minimal to mild, to moderate and finally severe, depending on various factors, such as the extent and depth of the growths, known as endometriosis implants.

The symptoms matched Ajanta’s. She brought it up with her gynecologist at her next appointment – the doctor agreed that she might suffer from it. Tests revealed that she had a large endometrial cyst weighing on one of her ovaries. Doctors refer to such endometrial cysts, which are filled with dark endometrial fluid as “chocolate cysts”. Her gynecologist recommended surgery to remove the cyst, a relatively simple procedure. Afterwards, Ajanta’s pain reduced. She was back on her feet in a few weeks.

But she wasn’t convinced that this was the end of the problem. She tried to discuss it with her gynecologist, and suggested that she could undergo an MRI scan. But she was assured that since she did not have symptoms, she was free of the disease.

In 2022, however, Ajanta began having trouble with her bowel movements. Though the natural course of action would have been to consult a gastroenterologist, her instinct told her the problem might be connected to her endometriosis.

After searching for information online, she finally found Dr Abhishek Mangeshikar on social media. Mangeshikar, who was based in Mumbai, specialised in endometriosis. “He read my discharge papers and figured out from them that besides the cyst, there had also been some endometrial growth in my bowels,” Ajanta said. “The previous doctor had not mentioned it to me, and of course, I did not know what to make of the discharge papers.”

Mangeshikar immediately ordered an MRI. The report showed that the disease had spread to her bowels, her ureter, and all over her pelvic region.

Within a week in the month of November, Ajanta had to have a surgery in which six inches of her colon were removed. The surgery took six hours and cost Rs 11.5 lakh.

“If any of the three gynecologists had hinted at this possibility and suggested a scan, I would have got it done immediately,” Ajanta said. “I’m someone who is very diligent when it comes to my health. It needn’t have gotten this bad.”

Ajanta said that after the surgery, she woke up many nights petrified that the disease would come back and impact her other organs.

Treatment of endometriosis requires long, complex surgeries that can be psychologically taxing, and place immense financial burdens on patients. Photo for representational purposes only: Monica Mwangi/Reuters.

Ajanta’s story is far from unusual. Mangeshikar, who is one of the few doctors in the country who works only on endometriosis cases, said that through in-person and digital consultations, he sees between 50 and 75 new patients every month, from India and around the world. In 2017, he started the Indian Centre for Endometriosis in Mumbai, which focuses on providing medical care as well as on spreading awareness of the disease.

In many cases, he said, patients have suffered from endometriosis for many years, and have been told by doctors and family members that they have nothing to worry about. They have also not been prescribed the requisite tests and investigations. By the time they come to him, often the problem has escalated to a severe degree, leaving no option for treatment but long, complex surgeries, as in Ajanta’s case, which are physically and psychologically taxing. “It’s one of the most overlooked diseases among women,” he said. “Doctors are often not trained to diagnose it.”

These surgeries also place enormous financial burdens on the patient. Mangeshikar explained that patients typically find it difficult to get insurance coverage for surgeries and other treatments needed for endometriosis.

A key reason for this, he explained, is that endometriosis almost always causes problems with fertility – thus, it is seen less as a disease than a hurdle to child-bearing. “Whereas in fact, it is a serious disease that can sometimes result in patients needing a transplant” if it extensively damages another organ, he said.

He explained that women’s health problems already received relatively little attention from the medical and scientific establishment. “Within that, women with endometriosis are particularly vulnerable,” he said.

He added, “The women who come to me are in debilitating pain and are not even thinking about fertility. All they want is to not be in pain.”

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In Priya M’s case, doctors delayed treatment for endometriosis because she didn’t complain of acute pain, and because she explicitly said she did not plan to have children.

Priya, who asked to be identified by a pseudonym, began experiencing a slight pain on the left side of her lower abdomen in late 2018. Fearing there might be a problem with her appendix, she had an ultrasound scan done.

The scan revealed that there was no problem with her appendix, but that she had an ovarian cyst. Her doctors diagnosed it as a chocolate cyst, which indicated that she had endometriosis. However, they told her she did not need to have it removed for several reasons: specifically, that it was small in size, that she wasn’t in any excruciating pain and that she wasn’t planning to have a baby.

Priya let it be. The next year, she noticed that she was having trouble with her bowel system. “It wasn’t anything major but there was some discomfort,” she said. “And the discomfort increased a little over time.” In 2020, she went back to the doctors.

She wanted to know if this was a consequence of her endometriosis. But the doctors said that since she had no other symptoms, they would not advise her to remove her cyst, or undergo any other treatment. “One doctor went so far as to say that she would not even consider my case to be endometriosis because I had no other symptoms,” she said. “I pointed out to her that I did have the cyst, and that I suffer from problems with my bowel.” She also explained to the doctors that she suffered from migraines, which she had learnt was another common symptom of endometriosis.

But all the doctors Priya met told her they would only recommend the surgery if she was planning to get pregnant. “Which is unfair to women who are not planning on having a baby.”

Though endometriosis causes immense pain to women, doctors often recommend surgery only to patients who plan on getting pregnant. Photo for representational purposes only: Mansi Thapliyal/Reuters

They also offered her another option: she could go on a course of contraceptive pills for somewhere between three months and a year. This, they said, would help her manage any pain associated with endometriosis.

“But my question was that this medication was for my pain management and I wasn’t in any pain,” she said. “So what would it be managing? I wanted to know what was causing trouble with my bowels and if there was a proper cure for my endometriosis.”

The doctors had no answer.

Finally, after doing her own research, including reading medical papers, watching surgeries on YouTube and following experts on social media, she found Mangeshikar. He explained to her in detail what her MRI reports showed. The cyst was only the tip of the iceberg, Priya was shocked to hear that the endometrial tissues had spread widely. “The endometriosis had affected my bowel area and even my appendix, which explained the initial pain I had,” she said. At Mangeshikar’s suggestion, Priya opted for a surgery. The procedure took four hours. Since then, she has been free of the disease. “I’m absolutely fine now,” she said.

Priya said she had visited ten gynecologists in Chennai – four for endometriosis, and six for another gynecological problem, which also, she recounted, doctors refused to take seriously. “For so long I had been gaslit,” she said. “Made to feel like a hypochondriac and like I was imagining it all. It took so long for me to get the help I needed.”

Women’s treatment can also be delayed because of the terms and conditions of their insurance policies – if the policies cover endometriosis at all.

An insurance seller that Scroll spoke to said that for those who opt for the surgery for health reasons, there is typically a waiting period of between one and two years. This is because the procedure is seen as “‘elective’” – that is, the beneficiary can wait and have the surgery,” she said.

Maria Rovito, a US-based PhD scholar in the field of medical humanities, who is researching endometriosis, observed that the problem existed abroad too. “Endometriosis surgery is not always covered here in the US,” Rovito said. “Our insurance system does not provide much coverage for ‘elective’ surgeries and endometriosis surgery falls under this.”

Rovito added that as a result, doctors had grown reluctant to treat patients with endometriosis. “Good specialists are out there, but often they don’t accept insurance at all,” Rovito said. “Many women here are not able to even get a diagnosis because of insurance and the cost of surgery.”

Mangeshikar said there was a risk of the same situation occurring in India. “If things don’t improve, doctors may turn down surgeries and patients may be forced to pay out of their own pockets, which they may not be able to afford,” he said.

This was particularly a problem in the case of “cashless procedures” – that is, where the patient can avail of the treatment without payment, after which the insurance company pays the hospital directly. “I’m still getting payments for surgeries I conducted in 2018 and 2019 because these insurance companies delay payments so much,” Mangeshikar said.

Insurance companies rarely approve of claims for endometriosis. As a result, doctors may grow reluctant to treat patients who seek treatment under their insurance policies. Francis Mascarenhas/Reuters

Insurance companies’ reluctance to provide coverage for endometriosis is part of a larger systemic problem – according to a survey by ICICI bank in 2018, only 39% of women in India are covered by health insurance. Even among those who did have insurance coverage, 48% did not know what kind of insurance they had.

In Ajanta’s case, the list of diseases for which her insurance provided coverage did not include endometriosis. For diseases not mentioned in the list, her policy mandated that she wait at least 48 months for her surgery. Ajanta had not waited – she had needed surgery immediately.

Later, when she filed her claim, for more than three months, the insurance company responded with repeated queries. She had to request Mangeshikar to write to the insurance company about her case and state that it was a valid claim. “I’m still waiting to hear back from them,” Ajanta said when we spoke in February.

In Priya’s case too, her insurance policy’s terms did not offer her the coverage she needed for endometriosis treatment – when she approached her insurance provider, she was turned down because she wasn’t eligible for uterine-related surgeries for the first three years of her insurance, and she was only two years into it. “They told me I had to wait for another year.”

Eventually, she filed her claim through her husband’s company’s insurance. “Corporate insurance usually doesn’t ask too many questions,” she said.

But a year later, Priya is still waiting for something that should ordinarily have taken 30 days. So far, she said, she has only received a little over 25% of her the amount she spent from the insurance company.

“Even if not the full amount, they should at least reimburse 75% of the costs,” she said. She has appealed again to the company, and is considering pursuing legal remedies if her claim is rejected.

Through the third party agent that facilitates the proceedings between Priya and her insurance company, she learnt that one of the company’s problems pertained to the doctor’s fees. “They want to know why I consulted a doctor who charged as much fee as he did,” she said. But, Priya pointed out that there were only a handful of surgeons who had the expertise to perform these surgeries. “They have no idea of the severity of the problem,” she said. “Nobody should be making a decision about whether my choice of doctor was okay or not.”

She added that the questions were particularly irksome because the policy had not mentioned any limits to coverage of doctors’ fees. Further, she said, she had submitted her reports ahead of her procedure, along with estimates of the costs, and received an approval from the company.

A doctor from a private hospital in Mumbai who herself suffers from endometriosis said she was only able to have her claim processed because she knew higher-ups in the insurance company through other colleagues at her hospital. “I was able to call them up and accuse them of harassing me over this claim,” she said. “Because I was a doctor myself, I think they took me seriously and reimbursed me.”

It was a familiar problem to Mangeshikar, who has written several letters of support for endometriosis patients, who are routinely denied coverage for their treatments. He noted that other diseases specific to women, such as fibrosis, cysts, and adenomyosis were similarly routinely denied insurance coverage because they are connected to the uterus, and so are perceived as fertility treatments. “The insurance system in India is entrenched in misogyny,” Mangeshikar said. “If a man is in pain, no questions are asked. But if a woman is in pain, insurance people will ask so many questions and try to somehow get out of providing any coverage for them.”

This attitude of the companies overlooks the health risks associated with endometriosis spreading to different parts of the body, which can lead to the damage of several organs. The disease can also cause immense suffering – for many women, the disease means an extremely painful period, accompanied by pelvic pain, pain in the lower back, abdomen pain and cramping. Some also suffer from painful intercourse, pain with bowel movements and urination, excessive bleeding during periods and even in between periods, fatigue, diarrhea, constipation, bloating and nausea. Often, women have to put their lives on hold for days at a stretch when these symptoms set in. Due to the severity of the disease, women are also at a risk of developing depression and anxiety.

Mangeshikar explained that apart from interrogating women on whether their treatments for endometriosis were “fertility-enhancing”, insurance companies also tended to nitpick about the costs. “For no other surgery will companies ask doctors to explain their fees, but for surgeries like these, we are asked to,” he said. The day that Scroll spoke to Mangeshikar, he had just completed a surgery that had started at 8 am and ended at 1 pm, in which he had to remove six inches of the patient’s intestine. “These are very complex surgeries that require doctors from multiple specialities,” he said. “But nobody wants to understand what goes into these procedures.”

Ajanta explained that the companies’ lack of understanding was reflected in the queries they asked her. In her medical reports, the doctor mentioned that she had “endometrial implants”, the term for the growths of endometrial tissue.

“The company sent back a query asking when I had gotten these implants done,” she said. “They did not understand the word ‘implant’ and assumed I had actually gotten something implanted in me. That is how little they know about women’s health.”

The insurance company also demanded to know why an assistant surgeon was present during her six-hour-long surgery. “My surgeon was not allowed to do the surgery without having another surgeon in the room,” she said. “There had to be someone who could staple the ends of my colon together. But it is so sad that I had to explain something like this to a health insurance company.”

The company also tried to deny the insurance claim by linking her condition to the fact that she had asthma. “Asthma is just part of my history and I’m not even actively taking any medication for it,” she said. “But somehow they wanted to link asthma and endometriosis.”

She contrasted this with her experience of dealing with the same company for an open heart surgery that her father underwent. Though the insurance process was somewhat complex because he had to get an additional “top-up” to his claim, the claim was cleared smoothly. “Even if it is a complex claim, they didn’t mind getting it done and immediately sending us the money,” she said. “I was the one who did all the paperwork there as well. But somehow for me, they have so many queries.”

Mangeshikar explained that insurance companies’ reluctance to pay for endometriosis treatment was exacerbated by the medical community’s poor understanding of it.

For instance, he said, doctors often prescribe oral contraceptive pills, without doing detailed investigations or considering surgery. At other times, even when they determine that surgery is needed, they stop with the excision of a cyst and don’t investigate the problem further – despite the fact that once they operate on the patient, they have an opportunity to fully examine them and determine the extent of the disease’s spread. “Even though the MRI scans help diagnose endometriosis, often only after we start to operate can we find the full extent of the spread,” Mangeshikar. “So it is important to invest time and effort into ensuring all the tissues are removed properly.”

As a result, doctors don’t obtain a full diagnosis of the patient, he explained. Thus, the treatment also remains incomplete, and the problem persists, with cysts often returning repeatedly.

According to him, insurance companies cite this persistence of the problem as a reason to deny patients coverage. “If doctors try to figure out the reason why the cysts are coming back instead of just removing them every time they appear, insurance companies cannot have an excuse to exclude coverage for these diseases,” he said.

He added, “As of now, expert surgical excision is the gold standard for treatment. In terms of improvement in symptoms and quality of life as well as reproductive outcomes.” While the possibility of recurrence could not be dismissed entirely, he noted, “the chances are very low after surgery.”

Further, he said, many doctors don’t have the patience, or the resources, to conduct full investigations and treat patients. “Removing a cyst only takes 20 minutes, and doing anything more requires a lot of time and effort,” he said.

In some cases, women who suffer from endometriosis also find themselves rejected from health insurance in general.

Such was the case with 30-year-old Mamta, whose struggles with endometriosis began when she was still in college. A few years later, early in July 2015, Mamta began experiencing unbearable pain. After suffering for two weeks, she was rushed to a hospital in Dehradun.

The first doctors she met made her take the CA-125 test, a cancer antigen test – when results show a high level of CA-125, it could indicate that the patient has cancer. Mamta’s test results showed high levels of CA-125. The doctors told her that she should rush to AIIMS Delhi for further treatment, because she could have cancer. “They said they may not be able to operate on me without removing any of my reproductive organs,” she said.

She added, “Because the spread was so wide, even my reproductive organs weren’t properly visible in the scans.”

A second consultation revealed that she did not have cancer, but had endometrial growth all over her pelvic region. That was when she learnt that while a high level of CA-125 can indicate cancer, it is also a test that indicates the presence of diseases like endometriosis, adenomyosis and fibrosis. Though endometrial growth can spread to other parts of the body, the tissue itself does not behave in the same destructive manner as cancer cell.

The second set of doctors assured Mamta “that they would be able to conduct the surgery,” she said. They spent the next eight hours carving out all the endometrial tissues.

Since then, Mamta has had to spend about Rs 1,500 each month on oral contraceptive pills; further, when the pain is very intense, she has to get painkiller injections that cost between Rs 8,000 and Rs 10,000 each. “I think this is a huge burden for patients from low income families. It took a huge toll on me as well,” she said.

Apart from surgeries, other treatments for endometriosis can also be expensive. Oral contraceptives can cost Rs 1,500 each month, while painkiller injections can cost up to Rs 10,000 each. Photo: Hannah Beier/Reuters

Bhuvana Balaji, who has worked in the field of menstrual and sexual and reproductive health, criticised the fact that medications like contraceptives are not covered under insurance.

“The narrow perception of contraceptives as medication for fertility and reproduction only, eliminates financial support for such procedures and medication, resulting in females having to self-fund these treatments, or not undergo treatment at all because they are unable to afford it,” she said.

After suffering the financial shock, Mamta decided that she needed to find a way to be more secure in case she encountered any other health troubles in the future. “But right at the beginning itself, doctors told me that with endometriosis there was no chance that I was going to get insurance,” she said. So she gave up on the possibility.

In some cases, women are denied insurance even if they haven’t previously incurred major costs on endometriosis treatment. Such was the case with Miriam James, who lives in Bangalore, and was diagnosed with endometriosis six years ago, when she was 25.

James’ pain was debilitating, sometimes limiting her to her bed for months together. It did not occur only around the time of her periods, but every single day. Most doctors recommended that she go on contraceptive pills. But James knew that contraceptive pills had several side effects – they could cause hormonal problems, unusual bleeding between periods, mood swings and weight gain. “It is basically a pill that stops your body from going through the natural cycle and I did not want to force any changes in my system,” she said. She also chose not to have surgery, and instead managed the pain with a combination of allopathic and alternative medication.

James did not have health insurance coverage through this time. It was only after she got pregnant in 2022 that she began to consider buying a policy that would cover her husband and her child. Some of her doctor friends recommended her an insurance provider. But while the company agreed to provide coverage for her husband and child, it cited the fact that she had endometriosis to deny her coverage, though she was the primary beneficiary. She was surprised, because this was a relatively generous policy – for instance, while most policies typically only cover hospital admission costs, this one also covered outpatient visits. “So I didn’t think that I would be refused coverage,” she said.

She added, “I have never been admitted to the hospital or had any surgeries. I have no idea on what basis they are denying it to me. So for any other health issue that may crop up in the future, I cannot get any financial support because I have endometriosis.”

All the six women Scroll spoke to for this story said that they hoped more women would start speaking up about problems related to their reproductive health. “We don’t have the culture of speaking out,” Ajanta said. “Women feel ashamed about talking about periods or the problems associated with their reproductive organs.”

Ajanta herself has attempted to take some steps towards this end. In January 2023, she wrote a Twitter thread about her struggle with the disease, talking about how long it took for her to get a diagnosis, how it was important to meet the right doctor, and how women should never stop trying to look for a solution if they felt that there was something wrong with their body. “I barely have any people following me, and still so many women responded,” she said.

She recounted, “Among them two women realised that they may be suffering from the same.” The women messaged Ajanta privately and spoke about their symptoms, saying that they feared that they were also downplaying their problem. Ajanta immediately suggested that they seek medical opinions.

“They went to the doctor and found out that they were right and underwent treatment,” Ajanta said. “That is why it is so incredibly important for women to speak about their health issues.”

In 2020, in perhaps the most prominent instance of a woman speaking out about the discrimination women face from insurance companies, Hollywood actress Hilary Swank sued her insurance company for refusing to give her coverage for treatment for her ovarian cysts, calling it a “sexist” move. In a statement, Swank said that she had decided to speak up after “years of experiencing my own health issues and the ensuing denials from my healthcare company for services that are medically proven to preserve my life”.

The problem of insurance coverage for women came into the spotlight after the actor Hilary Swank spoke out about her struggles to secure coverage for her treatment for ovarian cysts. Photo: Mario Anzuono/Reuters

In the statement, the actress said insurance companies’ “policies are antiquated, barbaric and primarily view the role of women’s organs solely as a means for procreation.” She added that she hoped to create change “for all women suffering from women’s health issues that have to battle with insurance companies who diminish the significance of their problems, don’t believe the patient’s (or their doctor’s) explanations surrounding their suffering, and severely preclude coverage to only incredibly limited services and procedures.” In 2021, Swank settled the case with the providers.

Priya said she was hopeful that these problems would begin to be discussed more prominently. “Speaking up will automatically drive change in the medical, pharma and research industries,” she said. “As a society, we shy away from talking about anything to do with sexual health, especially if it concerns women. As a lay person, I can’t say much about the medical or the insurance industry, but unless we begin to talk about the problem, we cannot drive any change.”

Corrections: 1) In a description of endometriosis, the phrase “the tissue that lines the uterus starts to grow outside it” was changed to “tissue similar to the lining of the uterus starts to grow outside it”. 2) A mention of tissue spreading to a patient’s “urethra” was corrected to “ureter”. Scroll regrets the errors.

This reporting is made possible with support from Report for the World, an initiative of The GroundTruth Project.