Shyla Serrao first felt shooting pains in her lower abdomen at age 43. The pain would come and go randomly during the month. This was followed by abnormally heavy bleeding and cramps during her menstrual cycle. As someone who had never experienced extreme pain during her cycle, she was baffled.
“I felt it was normal and would settle down. I’d sit in my chair at my workplace in a fetal position and with a hot water bag at home,” she says.
The pain got worse with time and as a workaholic, she’d pop painkillers and get back to work. Two years later, she noticed blood clots and her flow was at an all-time high. “I was fatigued all the time. Nausea and lower abdomen pain had also become common. This was when I decided to go see a gynecologist.”
The first suggestion by the physician was internal sonography which failed to give a clear picture. When the CA 125 (the protein cancer antigen 125) blood test showed a high range, the doctor suggested an MRI. He suspected Endometriosis but wanted to investigate further.
“The MRI reports showed clear endometriosis. Saying I was scared is an understatement. I was terrified.”
According to a recent survey by the Apollo Hospitals, an average of one million cases of endometriosis are recorded in India each year. When it comes to teens, the Indian Center for Endometriosis (ICE) states that “adolescent girls (13 to 19 years) constitute around 3 to 5% of the patients suffering from endometriosis.”
WHAT IS ENDOMETRIOSIS?
According to the ICE, “Endometriosis is an inflammatory disease that resembles endometrial tissue when examined under the microscope. The endometrium is the inner layer of the uterus that is shed off when a woman gets her period.”
However, when a woman has Endometriosis, this tissue grows outside the uterus. Commonly around the intestines, ovaries, ligaments of the uterus, peritoneum, and the gastrointestinal system. It has three types, namely, peritoneal superficial endometriosis, ovarian endometriomas, and deep infiltrating endometriosis (DIE).
Symptoms range from mild to severe, depending on the stage that you’re at. Common ones include extreme pain during menstruation, abnormal menstrual flow, pelvic pain, spotting at regular periods, constipation, and pain during sex, urination, or passing stool.
Another common symptom is subfertility. It means that women with Endometriosis may find it more difficult than most women to become pregnant. The ICE states that this is because “Endometriosis causes adhesions and scar tissue which cause the internal organs to get stuck to each other” resulting in “blockage of tubes or ovaries.”
There is a possibility that the numbers are far lower than reality. India has a history of prejudice against menstruating women, which dissuades them from reporting abnormalities in their cycle.
A survey by the NGO Dasra made news in 2014 when they reported that 23 million girls drop out of school annually due to a lack of proper menstrual hygiene management facilities. The cost of sanitary napkins is also high, even after the 12% tax on it was removed in 2018. For women who cannot even afford sanitary pads; paying for consultations, numerous tests, surgeries, and expensive medication is beyond their reach.
There is no cure for Endometriosis. A laparoscopy is usually done to remove scar tissue from time to time to ease the pain. However, an oophorectomy (removal of the ovaries), or a hysterectomy (removal of a uterus) is a solution if one doesn’t want to have children.
In 2018, Shyla underwent a hysterectomy. “The MRI showed Endometriosis on the uterus and surrounding area. They decided to take out the uterus, Fallopian tubes, and one ovary. The other ovary was retained,” she says. “The ovary that was retained had slight Endometriosis, which was destroyed using electrocautery. I had to take medication for the next six months. The CA 125 test also had to be repeated every three months to keep check,” she adds.
Early diagnosis is key. However, the problem arises when full-blown symptoms of the illness are ignored as normal period pain. Another issue that women with Endometriosis face is a misdiagnosis. The condition is often given the name of bad period cramps resulting in a life filled with pain medication. While medication is important, visiting an experienced gynecologist is key. You have to be honest and open about your history and symptoms for the physician to come to a conclusion.
Celebrities Who Have Spoken About Their Struggle With Endometriosis
The actress spoke about her battle with the illness with E! News, where she confessed to having kept the illness a secret from her husband. According to E! News, the star viewed herself as a “competitor” who could conquer whatever life threw at her. It was after an extremely bad episode with the illness that she decided to tell her husband.
Whether that’s your significant other, your family, a friend, your coworkers, whatever it maybe this should not be something that you should be afraid of. It doesn’t define who you are. In fact, I own it now and I am so glad that I have a voice to be able to help people with itJulianne Hugh
Sarah Hyland in an interview for Self Magazine on her kidney transplants also spoke about endometriosis. The actress has undergone several laparoscopic procedures to remove the lesions caused by endometriosis. She describes her endo-flare ups as times when “it’s hard to stand.”
“It affects so many women, and so many women go undiagnosed and just think that they’re having horrible cramps and they’re being dramatic because that’s what they’re told.”Sarah Hyland on Endometriosis
Padma Laxmi has been very vocal about her struggle with endometriosis, which started at age 13. She co-founded the Endometriosis Foundation of America as a resource for women around the world battling the illness.
“We used to plug in my heating pad under the judges’ table. When I was standing, as the camera would pan away from me, I’d sit down — I had a little wooden box my assistant would drag on set with me. After the first few seasons, I got a dressing room so I could lie down on a couch.”Padma Laxmi on her struggle with Endometriosis while being a judge on Top Chef
The author does not profess to be a medical expert and the information provided is for the purpose of awareness only, based on thorough research and a personal interview. Do not use this website for treating or diagnosing any health conditions. Always speak to a health professional before taking nutritional supplements, homeopathic or ayurvedic drugs or over the counter allopathic drugs. Contact a professional if you experience any abnormality in your regular menstrual cycle.
Read More About Endometriosis
The Indian Center for Endometriosis: https://www.endometriosis-india.com
The Global Portal for Endometriosis: https://endometriosis.org/topic/resources
UCLA Health: https://www.uclahealth.org/obgyn/endometriosis