(The Article is being republsihed as part of FIT's #DecodingPain series, where we pull apart the many layers of pain–the sensation, the causes, the stigma, and the treatments.)
‘It’s normal to be in pain when you’re on your period.’
Sohini, 34, who has been living with endometriosis for the last 10 years, wants you to know, ‘No, it's not.’
Chrissy Tegan, Padma Lakshmi, Katrina Kaif, Halsey. What do these seemingly random women have in common, other than the fact that they’re all killing it in showbiz?
They have all lived with endometriosis. And they have all been vocal about their struggles with the sometimes-life-threatening, always-life-altering condition.
Last week, for instance, Chrissy Tegan opened up about her endometriosis surgery, and the deep trauma left by the loss of her unborn child, Jack, in a heart-wrenching tweet.
She kept her fans updated on the thread, asking them about their experience with the procedure and starting a conversation among other women with endo who shared their own stories of fear, pain, courage, and resilience.
She also added that while the recovery was tough, “it is truly still better than the contractions and the pain of endo.”
Other celebrities, too, have on many occasions spoken out about how they have suffered at the hands of the somewhat-mysterious condition and tried to spread awareness about it.
And yet it remains largely unknown, even among many medical professionals.
Endo-what?
Endometriosis is a condition that occurs when the layer of tissue that is normally found inside the uterus grows outside it.
This endometrial tissue bleeds inside your body, but unlike menstrual blood doesn’t go the usual route through the vagina. The trapped tissues can cause inflammation in the affected areas and organs.
Dr Abhishek Mangeshikar, Endometriosis Excisional Specialist and the Director at The Indian Centre for Endometriosis (ICE), tells FIT that the symptoms of endometriosis can vary depending on the part of the body that is affected and the severity, but usually results in a great deal of prolonged suffering.
The most notable symptoms include nausea, migraines, digestive issues, abdominal pain, fatigue, painful urination, and extremely painful periods.
'Like Period Cramps Times Hundred'
While describing her struggle with endometriosis to The Guardian, Former British Member of Parliament Oona King spoke of the time she was “stretchered out of the House of Commons in an ambulance, after collapsing on the floor after six hours of earth-shattering pain, when one of the attendants whispered, ‘MPs aren’t allowed to die in the palace.’” “ I remember thinking, ‘maybe I am actually dying’,” she said.
“This is what others find hard to understand about endometriosis – it’s not just a ‘bad period’, it is agonising pain beyond belief.”Oona King, Former British Member of Parliament
“My months are split into 15 days of being in constant pain and 15 days of normalcy,” Sohini who has grade IV endometriosis tells us. “That's 15 days of constantly feeling like a knife is being twisted in your stomach. It's like 15 days of period cramps times hundred.”
And It Impacts Every Aspect of Your Life
It’s not just a ‘bad period’. It’s not just something that happens once a month on ‘those days’, says Sohini. “It takes over your life.”
The pain can hit anytime, anywhere, last for minutes, hours, or days, which also means canceled meetings, weekend plans, holidays, and losing out on important projects, and career opportunities.
Sohini, an event programmer, explains that her job has always been hectic, the kind that keeps you on your toes, but in the last few years, there have been times she’s had to let go of important projects and big events because of the pain and other complications.
“For months I was restricted to the desk because I didn’t know when what would happen.”
Model, writer, television host, and activist Padma Lakshmi who started the Endometriosis Foundation of America, has on many occasions talked about how endometriosis drained her of her life.
“It impacted every aspect of my life as a woman and as a human being, professionally, personally, physically, psychologically and emotionally.”Padma Lakshmi
Endometriosis is so common that 1 in 10 women are said to have it. In fact, in India alone, around 25 million women are said to suffer from the condition.
And yet what most of them do, for years, is suffer in silence.
'Please Endo My Pain'
One of the reasons women with endometriosis don’t get the timely help they need is because their cries of pain are often dismissed as ‘normal’.
Prerna Singh Bindra, a wildlife conservationist, writes about how she’s always had painful periods, and how a doctor told her mother, “she has a low pain threshold,” when she first tried to get the agonising pain checked at age 12.
It would be another decade and a half before she is properly diagnosed.
“One of the worst things about endo is that it’s invisible. People look at you, seemingly normal and fine, and think you are faking it. The crippling agony underneath isn’t visible to the eye.”Prerna Singh Bindra, writer, wildlife conservationist, PhD candidate at Cambridge University.
When Mansi, 24, (name changed) first started experiencing unusually painful cramps, and irregular periods at the age of 20, she was told that ‘it was normal’.
She knew it wasn’t, not for her at least. She had never had any menstrual problems before, her periods had never hurt before, and they arrived like clockwork. But it still took her 6 months of being in excruciating pain and switching two different gynecologists before she was properly diagnosed.
“My first gynecologist just gave put me on Crina-NCR—a common medication used to induce periods and help with irregular periods, and told me that this was normal,” she tells us.
“Even now when it gets really bad, there isn’t much I can do. I don’t want to be seen as one who makes a big deal of her period troubles.”Mansi, 24
Accounts of such dismissal, unfortunately, you get to hear often from women suffering from endometriosis and similar conditions.
Sohini talks about how although she’s been lucky to have had good doctors who pointed her in the direction of more qualified specialists, she remembers how one of the first gynaecologists had told her it was ‘just period pain’, and another who called her situation a ‘gone case’.
Mis-conceived Notions
One of the major myths surrounding the condition is that ‘getting married’ (becoming sexually active) would put an end to the pain.
When that doesn’t work, women are often advised to have a child.
“The myth that getting pregnant will cure endometriosis is a popular one, and it needs to be expelled quickly,” says Dr Mangeshikar.
This myth, he explains, comes from this one specific case of leap-of-faith when during a c-section a previously existing chocolate cyst was no longer seen. “There can be many reasons for this. It is common for cysts to leak, or reduce in size during pregnancy.”
There have also been cases where symptoms of endometriosis cease to present briefly during pregnancy. Again, there is no conclusive evidence that there is any correlation between the two, because in many cases, the symptoms are known to worsen.
Moreover, in those that it does suppress, they usually come back when the woman starts menstruating again.
“We need to stop pushing these patients to pregnancy instead of fixing the problem.”Dr Abhishek Mangeshikar
Another common misconception is that it can lead to infertility.
Although this may not always be the case, it is usually the target of the treatment.
“The main concern that patients with endometriosis usually come in with is often fertility, “ says Dr Abhishek Mangeshikar, “and the fear of infertility pushes them to IVF and other fertility treatments.”
He further goes on to say that the approach is wrong because the removal of the disease will deal with the fertility and not the other way round.
“They’re usually given the Sophie’s choice between dealing with their pain vs fertility, and most women in an altruistic manner will go for fertility, saying they can deal with the pain later.”Dr Abhishek Mangeshikar, Endometriosis Excisional Specialist and the Director at The Indian Centre for Endometriosis (ICE)
Another misconception is that one must get a hysterectomy surgery—removing the uterus—to combat endo. Dr Mangeshikar debunks this myth, explaining that endo is by definition the growth of uterine tissue outside the uterus, in other parts of the body where it shouldn't be, so removing the uterus would in no way help deal with the disease.
“Doing a hysterectomy for endometriosis is equivalent to removing the uterus when someone has appendicitis. ”Dr Abhishek Mangeshikhar
Hysterectomy for endometriosis would only help to some degree if it is accompanied by other complications in the uterus such as multiple fibroids, adenomyosis, abnormal uterine bleeding, etc.
If the endo itself is not dealt with, you will have complications and symptoms of endometriosis even after a hysterectomy.
What Can Help?
Much like cancer, there isn’t much clarity on what causes the abnormal tissue growth in the case of endometriosis. Unfortunately what this also means is that there is no clear answer to what could stop it.
While some studies suggest that it is caused due to excess buildup of estrogen, others point to immune disfunction. There does, however, seem to be a strong genetic component involved.
There are different types of endometriosis and depending on the type, the treatment would vary. The most common type of endo is ovarian endometriosis or the ‘chocolate cyst’, but it can also affect the bowel, abdomen, even diaphragm.
It is best to leave the course of action to a specialist.
Dr Mangeshiker emphasizes on the importance of seeing a specialist when you experience any of the symptoms to the point where it disrupts your everyday functioning.
He also adds that optimising the testing procedure is the key to reducing misdiagnosis and unfortunately we still have a long way to go.
“Gynecologists normally rely on the reports written by radiologists who may not be trained to identify endometriosis, particularly deep endometriosis, and so it often gets missed.”Dr Abhishek Mangeshikar
Do not belittle your own pain, and do not let anyone else dismiss it as ‘normal’ and something you just ‘have to bear’. See the right person to get the right help.
A specialist, after all necessary tests, may advise surgery or hormone therapy, or a combination of both, depending on their evaluation.
Sohini and Mansi, ten years apart, are both on oral hormones. While Sohini has grade IV endometriosis and has undergone three surgeries, Mansi hasn't had to so far.
Although not a permanent cure, they’re both able to control their symptoms with oral hormones and a very controlled lifestyle—a strict diet and lots of exercise.
But taking hormones isn’t without its own setbacks.
From mood swings, irritability, spurts of anxiety, and depression, they both talk of the havoc it wreaks on their mental health.
“Its hard to wrap my head around the things I feel. I try my best to not show it and to not act out, because its often brushed off as me PMSing.”Mansi
Along with the treatment, it's a whole lot of pain management, says Sohini.
“To the women who have or fear they have endo, my advice would be, see a specialist, follow a clean, organic, and dairy-free diet plan, and workout regularly,” she adds.
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