KUALA LUMPUR, Jan 23 – About 350,000 women in Malaysia are affected by endometriosis, according to a report by the News Straits Time in 2022.
The numbers could be higher, said Surita Mogan, founder of the Endometriosis Association of Malaysia (MyEndosis), but awareness about the condition is still “extremely low”, which is “very disheartening and alarming”.
Endometriosis is a disease where the presence of tissue similar to the ones lining the uterus is also found outside of it, causing inflammation and scar tissue to form in the pelvic area.
Women who suffer from endometriosis often have to contend with criticisms and judgement from a society that is unable to comprehend the severity of the disease and its debilitating effects because of its obscure and intangible nature.
“Endometriosis is an invisible and whole body illness. We look fine on the outside but we are suffering on the inside and going through hail storms every day,” said Surita, during an online forum last October on Period Poverty, The Gender Pain Gap, and Endometriosis.
Pelvic pain, painful sex, painful urination and bowel movements, infertility, fatigue, depression, anxiety, constipation, diarrhoea, nausea, and severe bloating are among the symptoms of this disease.
Because these symptoms are not immediately obvious to the naked eye, women with endometriosis are often maligned for voicing out their pain and suffering.
Judgements may come from family, friends, acquaintances, health care professionals and larger society. Unfortunately, women themselves are often the harshest critics of those with this condition, said Surita.
Some of the common criticisms levelled at women with endometriosis include that they are weak for complaining about period pain because many women suffer from it, that they are mentally unstable, and that chronic period pain is nothing compared to labour pain.
“Many do not understand that endometriosis is not just normal period pain, it is chronic period pain and there’s definitely a health condition attached to the menstrual pain that we experience everyday,” Surita said.
Also, labour pain is not persistently present in the everyday lives of women.
Unremitting Pain Compromises Quality Of Life
In a study on menstrual disorders among adolescent girls in Sabah, over 70 per cent of respondents said they experienced tiredness, headaches and appetite changes during menstruation.
The study concluded that the prevalence of menstrual disorders and related morbidities were high among girls in Sabah.
It also noted that the primary outcome of neglecting menstrual disorders and their related morbidities is impaired future sexual reproductive health in adults.
Unremitting pain compromises quality of life, according to Surita.
“How can we actually cope if we are experiencing pain all the time? Can women still tolerate pain? Of course not, if you are experiencing pain every day, I’m sure you are not able to do a lot of things.”
Surita cited another study involving adolescent girls in the Klang Valley, which concluded that menstrual difficulties have a substantial impact on their quality of life.
“This means to say that when girls have menstrual pain, their academic performance and social activities suffer tremendously,” she explained.
“In this study as well, almost 25 per cent of young girls were absent from school and some of them are unable to participate in school sponsored sports activities. Now this clearly shows that quality of life is most definitely affected.”
While not all the girls in the studies may have endometriosis, the diagnostic delay of six to eight years from the onset of symptoms means that the condition will remain untreated and potential patients will suffer unknowingly for a substantial amount of time.
The studies also point out the lack of awareness among girls about conditions that can have a massive impact on their health and life such as endometriosis or other reproductive health issues like fibroids, polycystic ovary syndrome (PCOS) and cysts.
Low awareness also informs people’s dismissive attitude towards those suffering from the disease. The difference between period pain and endometriosis pain is that the pain from the latter happens most of the time, said Surita.
“What might happen is we might have ovulation pain (before period) and during period we may have severe menstrual cramps that can drag on. And of course, sometimes the pain will also carry on even after your period,” she explained.
“This unexplained pain after period is sometimes related to how this condition actually spreads to other parts of the organs. When you are in so much pain, of course you are extremely tired.
“So generally a lot of us are unable to cope with our daily life, and sometimes we bite the bullet and struggle especially when we have a family or a job to go to.”
Takes Years To Diagnose
The problem is exacerbated by the fact that endometriosis takes years to diagnose and can only be done conclusively though surgery.
“The current European Society for Human Reproduction and Embryology guidelines for endometriosis recommend that patients should at least get an ultrasound and MRI.
“If the ultrasound and MRI are negative that doesn’t mean that they don’t have endometriosis, it means that they then can have diagnostic laparoscopy,” said Dr Hannah Nazri, a fellow with the United Kingdom’s National Institute of Health and Care Research (NIHR).
“In the past, doctors have been quite reluctant to take patients to surgery, understandably, because surgery has its own risks and complications, but I don’t think there is any excuse for us not to push forward for an ultrasound and MRI.
“There are many studies trying to optimise ultrasounds and MRIs to especially diagnose the lower stages of endometriosis.
“Endometriosis, you have Stage 1 to Stage 4. Stage 4 is considered more invasive and widespread and that’s diagnosed visually during surgery and to a certain extent you can see it in an MRI, but it’s really hard to see the lower stages of endometriosis on ultrasound and MRI,” Dr Hannah explained.
Without a non-invasive way of diagnosing patients, however, they remain in the same situation of being misdiagnosed and disbelieved, she added.
A diagnostic surgery could be the first of many surgeries for women with endometriosis.
“Some of us go through repeated surgeries and if you look at the type of surgeries that are done on us, we have the laparoscopy — which is the key hole surgery, a puncture on our abdomen, and it takes one to three weeks if you ever go through that surgery (to recover) — and the laparotomy — it takes one to two months of recovery.
“So what you see here is a lot of these women are on medical leave,” said Surita.
However, even after going through repeated surgeries, women might still be struggling with the condition.
“The strange thing is we do see health care professionals who think one surgery can solve the problem or sometimes some health care professionals think if we go on medication or hormonal medication, everything will magically disappear,” Surita said, adding that an available cure was among some of the myths about the disease that MyEndosis was trying to educate the public about.
Dr Hannah agreed with her.
“There’s a lot of myths going around like surgery can cure endometriosis and some patients believe this as well. I’m sorry, in my clinic I have to tell them there is no cure, sometimes surgery can work for patients, sometimes it doesn’t, and it’s not something that we can predict.
“To be honest with you, I don’t think there’s anything exciting yet in terms of a cure. There’s lots of research on how to manage symptoms and on pain and pain relief, because at the moment for pain relief, patients take the normal simple anaesthesia like ibuprofen, paracetamol and hormonal treatments,” she said, adding that hormonal treatments may not be suitable for everyone, especially those who want to conceive.
“Obviously hormonal treatments are also contraception and can affect your menstrual cycle — not in the long term but just when you’re taking it,” said Dr Hannah, pointing out that parents may also be unhappy that their children are put on contraceptives.
“So there’s a lot of things to unpack here,” she said, adding that in a nutshell, there was nothing interesting in the way of diagnostics or a cure as yet.
“Unfortunately, there isn’t a cure and there’s a lot of research going on and my main concern when I went to the World Congress on Endometriosis is that there’s not a lot of research from Southeast Asian countries,” she said, adding that her concern was whether studies done in Europe or North America are applicable to the Malaysian population.
“That’s one of the things that I would like to try and address. Surita rightly says that some health care professionals have very wrong ideas about endometriosis and that is a detriment to any research or any patient being taken seriously,” said Dr Hannah, who has completed a Doctor of Philosophy degree in endometriosis research at Oxford University.
“We are trying our best to work things out to make sure that people in Malaysia and women around the world can get the best endometriosis treatment.”
“When We Are Unable To Conceive, We Are Deemed Not Woman Enough”
Aside from physical pain, women with endometriosis also have to deal with emotional pain, which stems largely, again, from lack of comprehension about the disease.
“There are husbands and partners who are not supportive, and if they do not understand what you are going through as a patient, we have seen a lot of our members (of MyEndosis) actually speak about their spouses who left and then they finally got divorced,” said Surita.
“So this is one of the emotional hurdles that we go through.”
Infertility is another emotional challenge for women with the disease.
“Society places a lot of demand on us as females. When we are unable to conceive, we are deemed not woman enough. I guess this is society’s perspective, that a woman’s role is reproduction,” Surita said.
“So because we cannot conceive, for those of us who want to conceive we tend to experience depression or sadness if we are unable to do it.
“Even if there are ways to conceive like IVF (in vitro fertilisation) and IUI (intrauterine insemination), sometimes for women like us it is a challenge, because one cycle is not enough, we have to go through many or repeated cycles.”
Furthermore, fertility treatments are expensive, said Surita, adding that it puts an enormous dent on the financial ability to manage the condition.
Women with endometriosis may also have difficulty finding a partner.
“For those who are single, they are unable to look for a spouse or partner who can understand them, or sometimes family members at home and friends would not understand. So this is the judgement that we face from society.”
Single women also face financial limitations that make it difficult for them to manage their condition or infertility issues.
“And for those who cannot afford insurance with high premiums, this will actually pose a big financial constraint on them,” Surita said.
For working women with endometriosis, their situation is made more stressful when employers and colleagues fail to understand their predicament.
“Working can be very, very difficult, even maintaining job performance when you’re in so much pain. Some women tend to be absent from work or they take MC, or even if they are at work, they are unable to work productively,” said Surita.
“How do we actually explain this to our employers and worse still, to our colleagues, who might think we are lazy or we are exaggerating our pain, or we are just avoiding work.
“So, these are all the misconceptions that we see when it comes to endometriosis that we are trying to deal with.”
Enigma Of Endometriosis
It doesn’t help that endometriosis is an “enigmatic” disease, said Surita, adding that endometriosis patients range on a spectrum from those whose symptoms are mild to those with severe symptoms.
She added that studies on endometriosis patients have also “shown some strange things” that make the disease even more confounding.
“We have seen a lot of girls who have mild symptoms or no pain at all but they were diagnosed as having endometriosis by their health care professionals.
“Studies have also shown sometimes that if you have severe symptoms, there is a possibility that you can conceive, and yet on the other end, you have patients with mild symptoms and they cannot conceive. So I think it’s an enigma and more research needs to be done.”
Doctors In The Dark
Although MyEndosis has been around for 10 years now, Surita said they still “see a lot of health care professionals who are unsure of what to do with patients like us or perhaps they wouldn’t know how to handle patients like us.”
This poses a major problem for patients, especially when they seek treatment in public hospitals. While patients can easily set an appointment with a gynaecologist or specialist in the private sector, in public facilities they have to get on a more circuitous path to seeing the appropriate doctor.
“In government hospitals, the first line of interaction are general practitioners and usually they are the gatekeepers who determine whether your problem is serious or not,” Surita explained.
“A lot of times, members have come to us and told us that they have been dismissed or brushed off by their general practitioners, and that some general practitioners didn’t want to refer them to see a specialist.”
To address this problem, MyEndosis has reached out to general practitioners in government hospitals to educate them about endometriosis.
“When we talk to general practitioners we actually talk about our thoughts as patients and what are the challenges we go through. I think it’s important for doctors to understand that as there could be doctors who are still in the dark.
“We always inform our members to look for doctors who are supportive, and if possible, who can actually help you. We have actually seen doctors who force certain medication or surgery on patients, and we are trying our very best to give our patients the autonomy to make decisions, especially informed decisions.
“I am not surprised that sometimes health care professionals here in Malaysia do brush people off. It’s been happening up to now and I think we have a long way to go but we have to start somewhere.”
Don’t Brush Off People In Pain
The biggest way people can help women with endometriosis is through acknowledgement and empathy, said Surita, and this extends to larger society. “So please do not brush off anyone around you who is experiencing pain, especially the young ones.”
MyEndosis has come across a lot of girls in pain that first emerged when they were still in school, Surita said.
“That’s why it is very important for us to educate girls in schools and universities, as well as teachers. Teachers need to know this.”
She said the association runs awareness programmes in schools and would like to work with like-minded organisations to educate girls about menstrual hygiene, menstrual health and the difference between normal period pain and what is considered not normal period pain.
Surita added that employers also need to be educated about work flexibility and working from home.
“Of course, in Malaysia, we do tend to see a lot of employers who believe that working from home is our way of escaping but it’s not, really. Some of us do need that, or some of us thrive by working at home.
“And I think employers should be given incentives if they allow employees who have health issues to work from home.”
Menstrual Leave To Help Women Continue Working
While menstrual leave may be a “controversial” topic in Malaysia, Surita said it has already been implemented in countries like Spain, Taiwan, Japan, and Indonesia.
“Should Malaysia implement menstrual leave? At our association we are trying to drive home this message about creating an environment that can actually help women who are facing this problem, simply because we want them to continue working if they want to.
“There has been a lot of pushback on menstrual leave because there is a perception that it will dent our economy. This is not the case.
“If we talk about menstrual leave, it can be given to women if they actually have a letter of support from their gynaecologist or perhaps their specialist so they can continue working, and not stop when their employers are not supportive.
“We believe that if the mechanism is in place, and if there is a way of managing menstrual leave, it can be done. It’s just that we need the support from all of you.”
She said MyEndosis has worked with companies like Sephora, Maxis, and Great Eastern to educate their staff about endometriosis.
“So we need a lot more companies to open up to creating empathy and support for their female staff.
“Menstrual health and of course women’s health should not be swept under the carpet anymore, it should be taken seriously, and I think we ourselves can be the catalyst for actually pushing this agenda forward.”