Two women shares their experiences of enduring severe pain each month. Physicians dismissed them with pain medications, claiming they simply had a less pain tolerance. Here’s how they ultimately discovered the cause of their suffering through an endometriosis diagnosis.
What is Endometriosis?
Endometriosis is a chronic gynecological condition characterized by the growth of tissue similar to the endometrium, which is the lining of the uterus in areas outside the uterus. This abnormal tissue can develop on the ovaries, fallopian tubes and other organs within the pelvic cavity.
The misplaced tissue responds to hormonal changes during the menstrual cycle, leading to inflammation, pain and sometimes the formation of scar tissue. Common symptoms include severe menstrual cramps, pain during intercourse, excessive bleeding and infertility. Managing endometriosis often requires a combination of pain relief strategies, hormonal therapies and in some cases surgery to remove the excess tissue.
Understanding this condition is vital for those affected, as early diagnosis and intervention can significantly improve quality of life.
Experience Of the Two Women
“I had three weeks to live every month. The pain [during menstruation] was so excruciating that I felt like someone was stabbing me from inside and twisting my intestines. Seven doctors just gave me painkillers and told me that they were just painful periods,” says Women one.
“The pain was so sharp that it felt like something was completely wrong with my body. I just felt like I was not functioning for 14 days every month,” says women 2.
The common bond between these two women is their battle with endometriosis a condition characterized by tissue resembling the uterine lining growing outside the uterus. This condition, accompanied by intense monthly pain, made it challenging for both to function normally. However, they reveal that the most painful aspect was the lack of serious acknowledgment from doctors. One woman consulted more than seven doctors over a span of five years while seeking a resolution or diagnosis for her discomfort. Each time, she was dismissed and handed a prescription for pain medication. She experienced severe pain since her first period at age 12. After enduring this agony without a diagnosis for 14 years, she finally met a doctor who recognized her pain and suggested it could be endometriosis.
“I cried that day. I finally knew that it was not in my head, and it was not because I had a ‘low tolerance for pain’,” says women one.
After enduring pain for more than two years, two women discovered a solution. Similar to many other women, she was often told by physicians, “It’s just menstrual discomfort; all women experience it. There’s no need for concern.” Fortunately, having in-laws who worked in medicine was a great advantage. Her mother-in-law believed her and assisted her in finding the appropriate specialists.
Currently, both women are working to raise awareness about this condition, which is “notoriously challenging to diagnose.” Endometriosis impacts approximately 10 percent of women (over 200 million globally). “Don’t allow anyone to persuade you that pain medications are the sole answer. Your health is worth advocating for,” states Woman two, with conviction.
‘Felt like 1,000 needles were pricking me’
“Endometriosis is a disorder in which endometrial cells (inner lining of the uterus) grow outside the uterus and respond to ovarian hormones, thereby bleeding every month inside the abdomen, forming cysts,”Dr. Vinoad Bharrati, an obstetrician and gynecologist at Rising Medicare Hospital is also the director of Elite Momz.
A research consultant named Women two, based in Delhi and holding a PhD in organizational leadership, policy, and development, had enjoyed pain-free periods for the majority of her life. However, about two and a half years ago, she started experiencing sharp pains prior to her menstruation, which severely impacted her ability to function during that time. Alarmed by her symptoms, she sought advice from her in-laws, who are both medical professionals, and they referred her to a doctor friend. At first, the doctor thought it could be appendicitis but also mentioned the possibility of endometriosis. He suggested an ultrasound, although diagnosing endometriosis is challenging and often necessitates surgery for a definitive confirmation.
“The gold standard to diagnose endometriosis is a laparoscopy, a minimally invasive surgery in which conditions inside the abdomen can be seen. However, it’s an invasive mode of diagnosis. Clinical observation is crucial based on symptoms. Sonography and MRIs are important tools that aid in diagnosis,” adds Dr Vinoad Bharrati.
In the situation involving Woman two, the ultrasound initially excluded the possibility of appendicitis.“Doctors are hesitant to perform surgery just to check for endometriosis unless it’s absolutely necessary,” she explains.
Consequently, she was recommended to take a wait-and-see approach. A few months later, however, the pain flared up again—this time significantly more intense. While she was by herself in Bengaluru, she went to the emergency department at a hospital. This time, the ultrasound showed that her appendix was inflamed.
“The doctors were confused because they thought that it wasn’t swollen enough to cause the kind of pain I was experiencing. They decided to do an appendectomy (removing the appendix),” she shares, adding, “My mother-in-law, meanwhile, spoke to the surgeon and asked him to check for endometriosis too.”
The medical team overlooked the endometriotic tissue, which was prominently displayed in the ultrasound, mistakenly diagnosing her with appendicitis, laments Women two.“During the surgery, they touched the endometriotic fluid, which led to it spreading, leading to more problems. I faced massive digestion issues over the next year and a half accompanied by painful periods due to the aspiration during the surgery,” she adds.
This situation resulted in her taking painkillers every eight hours to control her discomfort.
‘Just listen to us; we know our body’
Bengaluru-based Women one, a biologist who shifted to science journalism, has experienced intense menstrual pain since she started her periods at 12. The time leading up to her menstrual cycle was incredibly difficult and impacted her daily life. There were instances where she had to be sent home from school because the pain became unbearable. As she moved on to college, this issue caused her to miss several days each month. Sadly, during her teenage years, she was unaware of the existence of endometriosis, which meant she had to endure the pain without understanding it. She had her first consultation with a doctor at 18, who recommended painkillers to alleviate her discomfort.
“The first assumption was always that I had a low pain tolerance. It was very frustrating as no one took me seriously. Over time, I wondered if I really couldn’t endure the pain,” She mentions that while working as a research fellow, she had to organize her tasks around this pain.
“I would work for three weeks every month as I couldn’t stand in the lab for a long time before my periods. I scheduled lighter work during the last week.”
When Women One was around 24-25 years old, she discovered endometriosis through a friend. After conducting thorough research on the condition, she became convinced that she was suffering from endometriosis. Throughout this time, she continued to see various doctors, hoping to find a solution to her pain. According to her, the first time a doctor took her concerns seriously was when her partner came with her and emphasized that the pain she was experiencing was not normal.“He insisted on further tests and the doctor agreed to take an MRI. I was undermined all these years despite knowing my body the best. They just had to listen to me; it’s not that difficult right?” she added.
The MRI confirmed Women one’s suspicions that she had endometriosis. “I cried that day. I felt robbed of so many life experiences. I wish they had just listened to me when I told them that it wasn’t normal period pain,” she says.
In December 2021, she had surgery to examine her endometrial tissue. The doctor prescribed hormone therapy; however, this treatment was ineffective for her, resulting in increased anxiety. “They closed me up and informed me that the tissue didn’t justify such pain. It affected my emotional and mental well-being,” says Woman One.
Dissatisfied with her treatment and now more informed about her condition, she sought help from an endometriosis specialist in Mumbai. Another MRI revealed that she had a cyst pressing on the ligament behind her uterus, which likely caused her pain. Therefore, in December 2022, she had another surgery to remove these cysts. A histopathology report later confirmed her diagnosis of endometriosis.
Since the procedure, Woman One’s life has significantly improved. She no longer needs to take painkillers and can live a normal life. “After a lot of gaslighting and insinuating that I was clamouring for attention, this diagnosis gave me the validation I needed. I wasn’t wrong; I knew my body,” she remarks.
‘Pain is not part of being a woman’
However, for Women two, the issues that arose after the initial surgery in February 2023 brought significant pain, even more intense than what was experienced previously.
“Since I had to travel a lot for work, I kept blaming it on water or food,” she says, adding, “It felt like 1,000 needles were pricking me from the inside. The pain was so sharp, I couldn’t stand; I would just collapse. I kept throwing up, feeling anxious and depressed.”
She also sought a second opinion from another gynaecologist in Delhi, who suggested that it could be endometriosis and recommended she think about using birth control pills. “Since the doctor didn’t insist much, I didn’t take them as I didn’t want to add another set of pills. I wish she had explained to me how it would help my situation,” says Women two.
Earlier this year, as the discomfort grew stronger, Women two had a CT and MRI scan, which showed a significant cyst measuring approximately nine centimeters. This finding resulted in another surgery. To be cautious, the operation was carried out in Delhi with the guidance of a reliable colleague of her in-laws.
“What was supposed to be a one-hour surgery extended to over five hours due to the liquid spreading across my stomach and digestive system. They also had to remove my ovary,” shares Women Two.
Recognizing the complete circumstances and prioritizing her well-being, the mother-in-law of Woman Two encouraged the doctors to extract the ovary during the operation.
“In most cases, especially with women of childbearing age, doctors usually try to save the ovary, but that can lead to further complications and more surgeries. I come from a very progressive family but I don’t know if most people will take that stand. I know of friends who weren’t even asked if they wanted to have a child. Doctors decided for them and saved the ovary. They had to undergo another surgery later,” Women two shares.
Women’s agency and their wishes aren’t taken into account, she rues. “Most doctors advise you to have children as it might sort out some issues according to them,” she says
Women one also chimes in. “I was just 25 and not married. The doctor suggested that I should think of having a child soon.”
Both women have ultimately discovered ways to alleviate their pain after enduring years of hardship. In conversations with numerous other women facing similar challenges, they note that the common agreement persists — their pain is often dismissed.
“This level of pain is not normal. It’s important to have the information to understand what your body is going through.Just knowing that it’s not in my head was hugely empowering,” says Women one.
“Why is a pain like this normalised?” asks Women One. “Pain is not a normal physiological process. Pain is not part of being a woman. This whole ‘women need to endure pain’ mentality needs to stop.”
To create a #BetterIndiaForWomen, both women emphasize that it’s important for medical professionals to pay attention to women’s needs. Additionally, it’s crucial for women to prioritize their health.“Just listen and indulge women who come seeking help from you. Hear us out. It’s not in our head,” reiterates Women One.
“If your pain is bad and not something you’ve experienced before, go to a doctor. Find one who listens to you and don’t give up. Start taking care of yourself and give priority to your own health,” she adds.