Oprah Winfrey once said, “We can’t become what we need to be by remaining what we are.”

As healthcare professionals, continuous growth is a must, and we must strive forward to become better. Well, what better way to achieve this than our very own YPC Live Podcast! In this second edition, we are focusing on a topic that is very close to our hearts and is a vital part of our jobs – Patient Touch. Communication is key to better healthcare and for it to work effectively, and it has to work both ways where patients and healthcare practitioners contribute in the process.

Penang General Hospital’s Nuclear Pharmacist, Ren Zhang moderated the fruitful session with our guest of honour, Ms Surita Mogan, the founder of MyEndosis.

Endometriosis – the Misunderstood

Endometriosis is a condition whereby endometrium-like tissue grows outside of the uterus especially around the pelvic area, bowels and in rare instances, the stomach or lungs.

Chronic period pain is a common symptom, yet it is often overlooked because that is what periods ‘should’ be. Should women’s pain be ignored? When is it categorised as abnormal?

#1 The Symptoms

Simply put, people suffering from endometriosis have one common symptom – chronic and severe period pain. We’re not talking about normal period pains. This pain often occurs before and during menstruation in the lower abdomen and they are painful enough to affect daily activities. As Ms Surita puts it more objectively, ‘I only have 15 pain-free days a month. The painkillers just keep getting stronger.’

There are instances whereby patients experience pain in other areas of their bodies as well where endometriosis occurs in the other organs.

#2 Hush-hush

It is hard to tell people about endometriosis. Some have never even heard of the disease. Since the most common symptom – period pain is near-universal to all women, it is not easy to overcome taboos against women health. Periods, or generally any form of illness that is related to the female reproductive system is often hushed in Asian culture. Many are not able to discuss it openly, let alone know when to seek help.

#3 Neglected and Discriminated

Ms Surita pointed out that HCPs generally had a side-eye towards her condition.

“It is just period pains, everyone has it.”

“Is it really that painful?”

On one occasion she was even mocked by a GP saying that ‘Indians have low pain threshold’! Such a terrible response has been experienced by a patient herself and we should question ourselves, are we doing enough? Are we caring for our patients? Family members often misunderstood that she is exaggerating her pain. Doctors dismissed it with stronger painkillers after each visit. Nurses think she is overreacting. Superiors at work thought that she just wanted to laze around with some ‘painful’ excuse.

All the years prior to her diagnosis, it had been dark and lonely. Not only do people close to her do not understand her pain but even HCPs did not acknowledge her circumstances as well.

Journey of one to be heard

MyEndosis stemmed from a journey. A journey to ensure every woman is heard and not misjudged because of a painful condition.

The depressive state due to the suffering from endometriosis led Ms Surita to search for encouragement by connecting with people like her from abroad. MyEndosis was born because there were no representatives from our country participating in the EndoMarch in the United States and Ms Surita stepped out of her comfort zone to become a voice for fellow Malaysians suffering from the disease. Registered legally in 2014, the road towards awareness was set and she never looked back since.

MyEndosis currently encompasses committees and members from all walks of life – from patients, HCPs, spouses and the public. This amazing team of people are coming together to ensure that Malaysians understand more about endometriosis and that the community can empower and help people suffering from it.

Delayed diagnosis

Visits upon visits, there was no solution to her chronic period pain. It was just the addition and stronger painkillers to curb the pain. Many GPs had dismissed it as something ‘normal’. Had not Ms Surita’s aunt, a nurse, referred her to a gynaecologist, she would still be in so much pain! Nevertheless, it still took a long six to seven years before she was properly diagnosed with endometriosis. How can HCPs do better?

HCPs: Listen up!

After listening to Ms Surita’s journey as an endometriosis patient, it would be a lie to say that it did not wrench your heart a little, prompting us HCPs to do more and do better in our profession. These are the gold nuggets that were suggested throughout the podcast that would help us to have that ‘patient touch’ in our line of work!

#1 Acknowledgement, empathy & listening skills

Endometriosis patients are in pain. Some may have mild symptoms, while others who are not so fortunate, have severe pain that lasts for weeks. If your patients keep coming to you with complaints of pain, take time to listen to their symptoms. Allow them to explain and empathise with their situation. It would not benefit the patient to solely treat the symptoms and dismiss them with painkillers after each visit. Acknowledge their pain and discomfort, place yourself in their shoes and understand them from their point of view. By providing the acknowledgement they need, it would lead to quality care and treatment.

#2 Be well-informed and equipped

In an era where everything can be at your fingertips and Google is your next best friend, patients are coming to HCPs with a lot of information (the good and the bad). It is vital to understand that our roles have shifted into guiding patients with professional advice and having a discussion with them regarding their disease and treatment options. Gone were the days where ‘doctors are always right’! It is high time HCPs upgrade themselves with updated information about endometriosis and the various treatment options and side effects. This will enable us to better advise our patients and refer them to a specialist if required.

#3 Laying out the options: the good and the bad

One of the points discussed in the podcast was that patients were not informed of the bad side of different treatment options. Taking Ms Surita’s case of going through laparotomy, she was not aware that surgery would impair the quality and quantity of her eggs! This should not be happening, especially when disadvantages of treatments would affect a patient’s future as a child-bearing age woman. HCPs should lay out the benefits and downsides of each treatment option so that patients would know what to expect. It is not right to solely make decisions on what is best for the patient based on our understanding. Patients should have a say in what form of treatment options they prefer.

#4 Cooperation: allowing patients to make decisions

Having said that, all important information should be given to the patient, this is where the tricky part comes. Many a time conflicts happened in the consultation room due to differing opinions between patients and the HCPs. It is great to constantly have this reminder that some suggested treatment options may not be what the patients want. Take an example discussed by our speaker, the patient was asked to get married and have children even though she did not want to, citing that would be the solution to relieving endometriosis symptoms. HCPs should allow patients the final ultimatum in deciding their treatment options. If one strongly believes that the benefits outweigh the disadvantages in a certain treatment, the HCP should be able to list down all the supporting reasons for the solution so that patients can have the necessary knowledge to reconsider. At the end of the day, it is still all for the health of the patients.

Pharmacists: another bridge to better patient care

Quoted from Ms Surita herself on a positive experience with a pharmacist, to only get some painkillers from the counter, she received quality and sincere care from the pharmacist herself. She was asked the reason for purchasing strong painkillers and advised to seek medical attention if the pain persists.

HCPs constantly need to deal with time constraints especially when there is a large flow of patients be it in the pharmacy, clinic or least to say, hospitals. This is an important and realistic visual where patients can receive a positive impact when we take a little time to show empathy and care. Provide the acknowledgement towards their concerns and ailments so that patients are able to feel that they are understood. When patients can feel the sincerity and trust their HCPs, they will open up and this will help in the process of recovery.

Patient touch, an intricate process. All HCPs including pharmacists should be encouraged to add some effort to the daily lives of our profession. It can brighten a patient’s darkest moments and direct them to better quality care.

Interested in endometriosis awareness? 

Log on to their website, MyEndosis or check out their Facebook page – Endomarch Malaysia.

This article is part of the YPC Live Podcast series. Missed out the first part which we discussed about workplace communication? You can catch up here

The opinions expressed in the article are the writers’ own and do not reflect the view of MPS YPC.