We all know how important statistics are in garnering attention. We’ve seen how it works be it in a workplace setting or even in school. I believe we could all agree there is a lack of statistical figures when it comes to Endometriosis here in Singapore. While there are a lot of such activities overseas, the gap here is concerning. Therefore, we have plans on equipping the community with these numbers. This is also to get more people involved by giving them the ownership to narrate these results so as to evoke awareness.
The 1st survey entitled; 'Dear Doctor please hear us out...' aims to identify the patient/doctor communication gap especially during the 1st consultation. The survey was launched on the 29th of May and ended on the 18th of July. That is a total of 7 weeks of data collection. The mode of survey is virtual, through Microsoft Forms which is shared across all our media platforms. There are 11 questions in the survey and in the end, 99 responses are collected.
The results are as follows (kindly refer to the video above for a better understanding):
Out of 99 responses, 97 are from Singapore, 1 from Malaysia & 1 from Others.
Only 27% saw the O&G directly & 73% saw 1 to 5 GPs & more before they are channeled to seeing the O&G.
50% saw 2 to 5 O&Gs & more before being diagnosed with endometriosis.
A huge 78% saw 2 to 5 O&Gs & more before they feel satisfied with the counselling they received
Why is this so? 66 % feels there was inadequate sharing of information (disease knowledge & treatment options, 54% feels doctor does not understand patient’s needs and was not empathetic, 51 % was not comfortable with doctor's proposed treatment, 42% feels doctor is not experienced in treating endometriosis, 41 % feels lack of trust in doctor's advice, 36% thinks counselling feels rushed and 28 % thinks there was inadequate counselling.
67% were not informed that endometriosis is a chronic disease that may require long-term treatment
45% were not informed that endometriosis may affect future fertility, and this is largely highlighted from the frequently asked questions about fertility in our Facebook page prominently to the lack of transparency especially the part where laparoscopic surgery would reduce ovarian reserve.
67% were not informed on the possibility of repeated surgeries due to recurrence of disease. I can relate to this. Before I’ve gotten a proper diagnosis, I was under the care of several O&Gs who kept brushing away my concerns by drilling me with how common Endometriosis is. They made Endometriosis sound ‘normal’ just like how I would usually wake up and brush my teeth every single morning kind of ‘normal’. I am made to feel that I too should put off the ill gutted feeling I have about my condition. There is no mention of how this would affect my quality of life let alone the possibility of repeated surgeries.
69% get diagnosed with Endometriosis through ultrasounds, 43% through laparoscopic surgery & 41% through physical examination.
83% source out information on Endometriosis through the internet, 65% through O&G & 52% through patient support groups. This is comforting to know that the efforts put in creating Endometriosis awareness all these years are helping patients out.
When it comes to rate the topics which are important during the first consultation, we can see from the chart that all the topics are equivalently important. For easy identification, I have segregated the result into 2 categories; red bars are topics related to emotional/social effects and purple bars are for physical effects.
In the red bars category, the 2 topics which have a higher average number are:
The impact of Endometriosis on the emotional well being
The impact of Endometriosis on my study/work/social life
In the purple bars category, the 2 topics which have a higher average number are:
Treatment options including risks & benefits
Definition, common symptoms & severity of Endometriosis
To sum up, around more than half of the responses agreed to the lack of information, transparency, understanding, expertise & empathy (Q4 to Q8) from their first consultation & this leads them into seeking a second opinion or more.
There are fellow members in our FB page who vented their frustration and confusion about their consultation. Notably the feeling of disregard upon unnecessary advices especially these 3:
getting pregnant /hysterectomy to alleviate pain,
to not think too much about it as it is a common ailment or
menopause would get rid of the agony
These remarks trivialize patient's worries and make them feel small which would usually worsen their emotional state.
We are all connected by a simple wish, to be visible, to be heard, to know that we matter. So, while the uncertainties surrounding Endometriosis are scary, let there be one hopeful certainty, that the awareness today shall pave the way to the betterment of tomorrow. Namira Mohamad Marsudi
So I implore that you use your given right to freedom of expression to take these figures and bring forth Endometriosis awareness. I am the voice of one but if all of us step forward, I am certain we can channel more attention in ensuring progression in Endometriosis support & health-care in Singapore.
Together we can make a difference! 🙌
Namira Mohamad Marsudi
E for Endometriosis