All About Endometriosis + Stories of Women Who've Lived with It8 minute
When it’s “that time of the month” for women, they experience bloating, mood swings, cramps and what not. However, for women with endometriosis, all this is an understatement. For those unaware, endometriosis is a disorder which can be extremely painful. It is a long-term condition which can affect the sexual, physical, psychological and social life of a woman.
According to the Endometriosis Society of India, 25 million Indian women suffer from this condition. However, the sad part is that it is rarely spoken about or understood owing to social taboos around menstruation. To tackle this issue, across the globe, the month of March is celebrated to raise awareness around endometriosis. Not just in India, in the UK too, endometriosis is hampering the health of women. A recent survey revealed that one in ten women suffer from this condition in the UK.
It’s not just a difficult word to pronounce, the symptoms are even more daunting. You and I cannot even imagine the pain the sufferers may be going through. The first step to tackle this condition is raising awareness.
In this blog, we aim at covering all the information you need to know about endometriosis. We will also share experiences of real women who’ve been diagnosed with this condition and the struggles of living with it.
What is Endometriosis?
It is a disorder in which the tissues which normally grow inside the uterus, grow outside it. Besides the inner lining of the womb, the tissues are found elsewhere in the body such as ovaries, bowels and pelvis. During every menstrual cycle, there is bleeding in the abnormal tissue growth. As a result of this, the tissue grows, thickens and breaks down every month. It can be an extremely painful condition as the blood collects in a closed space due to the absence of an outlet. Over time, the accumulation of blood can also turn into cysts which is not just daunting but also causes debilitating pain in the lower abdomen, pelvis, rectum, lower back and vagina during sexual intercourse.
Besides trapped blood, endometriosis can also lead to several additional problems including:
- Inflammation – severe redness in the affected areas
- Cysts – these can form in the ovaries
- Block fallopian tubes – abnormal tissue growth over the ovaries
- Bladder and intestinal problems
- High probability of infertility
Factors that Cause Endometriosis
Though so many women suffer from endometriosis, the exact cause is unknown. However, researchers believe that a combination of symptoms contribute to the condition. Here are some of them:
- Reverse Menstruation: In a normal situation, the endometrial cells in the womb exit through the vagina. However, when a woman is suffering from endometriosis, the endometrial tissues have no direct way out of the body. Hence, they migrate backwards through the fallopian tubes and get back into the pelvis. This accumulated blood releases high levels of inflammatory mediators which further causes pain and scars.
- Faulty Immune System: It cannot be ruled out that a faulty immune system can fail to destroy remote endometrial tissue. This further means that women with endometriosis might have immunity issues.
- Genetics: In certain cases of endometriosis, a genetic role may also be involved wherein this condition has been passed on by someone in the family.
- Surgery: During certain abdominal surgeries such as caesarean or hysterectomy, if the endometrial tissue is wrongly moved, it can result in endometriosis.
Symptoms of Endometriosis
The symptoms of endometriosis in an older age group differ from the younger. This makes it extremely tricky to diagnose the exact condition. Some women may even be symptom-free. However, they might experience trouble conceiving. Some of the common symptoms include:
- Painful or heavy periods
- Deep pain during sexual intercourse
- Diarrhoea, constipation and bloating during periods
- Severe lower back pain
- Bleeding in between periods
- Frequent urination
- High blood pressure
There are many women who experience these symptoms during a normal period too. That does not mean you have endometriosis. When it comes to any condition or disorder, it is important to never self-diagnose. If the pain is abnormal and interferes with your normal life, it is worth getting it checked. Experts and research suggest that if a woman complains of long-term abdominal or pelvic pain, there are chances of it being endometriosis.
How to Confirm an Endometriosis Diagnosis?
Endometriosis can be hard to diagnose because every woman experiences different symptoms. Also, certain symptoms can also be linked to other illnesses such as pelvic inflammatory disease or irritable bowel syndrome. However, most doctors and gynaecologists confirm the condition by conducting professional evaluation and several tests including:
- Ultrasound: An ultrasound is an effective method of diagnosis. It can be used to detect cysts in the ovaries or deposits in the bladder, uterus or bowel. Most doctors use abdominal or transvaginal ultrasound to display images of the reproductive organs.
- Laparoscopy: A clean blood test report does not ascertain whether you have endometriosis or not. The only definite method to identify this condition is a laparoscopy. In this diagnosis, the tissue is viewed directly. It is a minor surgical procedure. If the disorder is diagnosed, it can also be treated the same way.
- Physical Examination: Though the abdominal and pelvic examination doesn’t yield definite results, a few doctors perform it to check if there are any scars behind the uterus. The imaging is done in the form of an ultrasound or MRI.
Though endometriosis is not life-threatening or dangerous, it can be debilitating. The pain experienced by women can be physically and emotionally exhausting. It is a serious condition which cannot just be discounted as a “bad period”. Nobody can understand the severity of the issue till it has been diagnosed. Women across the globe have narrated what it feels like to live with endometriosis.
Though pain medication, hormone treatment and surgery are used to treat endometriosis, there is no definite cure. Also, endometriosis and pregnancy aren’t the best combination. Though some women are able to conceive, the process is incredibly painful and difficult.
Living with Endometriosis: What Women Experience?
Though so many women across the globe are diagnosed with endometriosis, it is seldom spoken about. Below, we have chalked out the experiences of five women in India who have battled endometriosis.
- Lakshmi Sharath, Bangalore
46-year-old Lakshmi Sharath has been battling endometriosis for nearly two decades. She said “you want to scream”. She lives her life in fear, in pain and in anticipation and fear of the pain. Her first pain attack was when she was in her teens. She got home from school crying and had to take an injection. Ever since then, she’s been experiencing anxiety, helplessness and anger. She even stated that nobody understood her pain. Her friends started disowning her as nobody was interested in listening to her “pain saga”. When she was 36, she underwent her first of the many laparoscopies. A cyst of dried-up blood was removed from her uterus. At that point, her confidence crippled and her whole life had been taken over by this strange disorder. Today, she lives with the hope and prays that someday she will be relieved and free from this pain. She is even exploring Ayurvedic remedies for pain relief.
- Meher Mirza, Mumbai
Meher Mirza is a 40-year-old writer from Mumbai. Ever since she got her period as a teenager, she battled extreme pain and fatigue. She even stated that during the first two days of her period, she would change her pad every half an hour and still find herself in a dirty, blood pool on the bed. She even experienced nausea and heavy bleeding besides unbearable pain. At one point, she even wanted to carve out her uterus with a knife. However, a plus point in Mirza’s case was that her family was extremely supportive. They would often give her hot water bags, painkillers and sympathy. Meher received her diagnosis when she was in her late twenties. Until then, she only treated it as a bad period. Neither her nor her family had heard of the term “endometriosis” till then. However, when she was diagnosed, her endometriosis had already spread to several organs. A laparoscopy helped her get rid of the scarred tissue and painkillers offered her great relief too.
- Keethi Bhaskar (name changed), Chennai
Keerthi Bhaskar, an IT consultant from Chennai said that her pain was so intense that she often contemplated suicide. She could hardly move and the waves of pain were shooting. She even said that for two weeks every month, it felt like she was trapped in the prison of her body. From confronting people who barely understood her to getting lectured that every woman has to undergo pain during their period, Keerthi faced many hardships. Family, friends or even doctors did not understand her pain and suffering. Before being diagnosed with endometriosis, Keerthi had visited two dozen gynaecologists.
- Aakanksha Bhargava, Delhi
Aakanksha was diagnosed with cysts on the outer lining of her uterus when she was only nineteen years old. She also had her first surgery during that time. To help her manage her lifestyle and control her pain, the doctor even prescribed hormonal therapy which unfortunately reversely affected her. She developed blisters all over her body. Nothing in the world could ease her pain, gas and inflammation, and overall condition. She was even suggested to get her uterus removed or get married and start a family immediately. With endometriosis, getting pregnant as you get older can be difficult. However, as a strong woman, Bhargava had decided to not let anyone else choose for her. There were days when she even took four painkillers owing to the massive cramps. However, after getting married, she went ahead and had a baby and underwent six surgeries. According to her, the best way to fight endometriosis is by building support groups and getting rid of the stigma attached to this condition. She also added that though this disorder is not curable, it can be managed by consulting qualified doctors and verified groups and women who are also battling this condition silently.
- Sanjana Agarwal (name changed), Bangalore
Sanjana is a structural engineer from Bangalore. She was diagnosed with endometriosis when she was barely seventeen years old. During that point, she had never heard of this condition and it bewildered her. Sadly, eight of ten gynaecologists advised her to get married and start a family. They tend to suggest this as an option since the symptoms are silent during pregnancy, and progesterone, the hormone that supports a healthy pregnancy tends to suppress oestrogen which causes the growth of the endometrial tissue. She stated that marriage was the last thing on her mind and she only wanted to get rid of the pain as soon as possible.
Though some of these women have undergone surgery to get rid of the chronic pain, there are many others in India and across the world who are living with endometriosis. If you know someone battling this condition, be kind and empathetic.