Quiet no more! : Medically, socially and politically – This is why endo sufferers need our support

Words by Jumana

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It was an average Friday while a group of people gathered at Hulhumale’ Ruhgandu for a cause that silently ripples through society like a painful throb. The slogan “Her fight is My Fight” is a beautiful reminder that although the pain is insurmountable, you are not alone. Five women just at the front held together a banner that read “Together in Strength”, more metaphorical than it initially appeared. This is the story of women supporting women through insurmountable pain and chronic suffering. This is the story of Endo Maldives and lived realities.

We at Kaleo are humbled to be able to speak with the Founder and Exco Chairperson of the Endometriosis Association of Maldives, Fathmath Mizna Ali as well as the organization’s Medical Executive Dr Ahmed Shammas Yoosuf about the organization and challenges faced by this relatively unknown illness. The word suffering has found its opponent in resilience, power and empowerment in the leaders and members of Endo Maldives.

“Looking back and thinking about the March, personally it was very emotional. For us as endometriosis sufferers to be out there in public and talk about something that is a very very personal thing and it was very emotional. Dr Christina from Treetop Hospital spoke at the event about the very painful lived reality of those suffering from endometriosis and it truly touched us. There were so many tears so it was very emotional”

“When we all started the walk it felt unreal..We were all holding the banners together and it felt like a success to get the exposure since so many people (even if they know the word) don’t really understand what endometriosis is. So yes it was a very happy and emotional moment for all of us”

~ Founder of Endometriosis Association of Maldives Fathmath Mizna Ali ~

It all started with an endometriosis sufferer who took seven long years to reach the diagnosis and find out that she is at stage 4 of the disease. While it doesn’t happen in all cases, sometimes the illness causes infertility. After nine years of trying to conceive, Mizna went through one of the most painful things a mother can go through- a miscarriage. It was during these harsh times and going through the ringer of hospital visits when Mizna and her husband observed the gaping hole where endometriosis awareness and support should be. “We didn’t know it was that common back then. We personally didn’t know anyone going through it but we thought to ourselves “If global statistics are any indication, there must be many going through this”.

“Majority of the people on the board are stage IV sufferers of endo so this is a very personal cause for each and every member so we are very passionate about the work we do”

~ Founder of Endometriosis Association of Maldives Fathmath Mizna Ali ~

 

The Endometriosis Association of Maldives was officially formed three years ago around March 2019. Along the journey towards IVF and conception of her first babies, a tenacious mother-to-be wrote to several international organizations asking for guidance. Mizna credits Deborah Bush at the Endometriosis New Zealand for being one of the first supporters of the organization. Soon enough, the mother of twin babies, would be carrying forward with the organization, while going through a painful return of symptoms.

“It’s not just men who make these kinds of negative comments. To me one of the saddest things is when in situations like workplaces where women say these things to other women. That needs to change”.

~ Founder of Endometriosis Association of Maldives Fathmath Mizna Ali ~

With March being endometriosis awareness month and organizations such as the Worldwide EndoMarch, the Endometriosis Association of Maldives held their endo March with sponsors as well as medical professionals who conducted talks such as Dr Chsitina from Treetop Hospital and Caretrust Clinic’s Dr Rasheed.

If you were in a room with 10 women, it is extremely likely that one of them is going through the horrific implications of this illness.

Imagine having no choice but to try and get through daily tasks while your organs feel like they are being clawed. Basic human necessities such as bowel movements lead to you ending up on the bathroom.floor and passing out from the pain. Pain that is blatantly dismissed by several physicians. Pain that makes you throw up because of how strong it is all the while smiling through hundreds of unsolicited advice, from “just take a panadol, we all get period pains” to “I’m sure it’s not that bad”. Society is quick to impart unsolicited advice on an impossible situation they know nothing about. With that comes judgment, and with judgment comes shame and guilt, “Am I doing enough? Do I deserve this because I’m not doing everything these people are saying?”. This is the horrible reality of many that live with the disease. For most that stops after an excruciating time, only for it to come back less than two weeks later. How do you deal with having to pick up your life all over again every 2 weeks.

With most diseases like this, diagnosis comes along with some sort of solution and hopefully some relief. For those suffering from endometriosis, it comes in the form of reassurance that this is not your fault.

“One of the biggest things for me is when going through physical pain and people very often say “You are a woman, you have to be patient and bear with the pain”. That mentality needs to be remedied I believe. We don’t need to persist in pain just because we are women. Saying things like “Child labor is more painful than that, bear with the pain” negates the chronic nature of endometriosis”

~ Founder of Endometriosis Association of Maldives Fathmath Mizna Ali ~

From operating rooms, to policy floors, there is a massive unawareness and unpreparedness even within the health sector regarding this disease. As Mizna pointed out, the disease isn’t just limited to one organ. “Endometriosis is a whole body disease and is not limited to the reproductive organs. There are members of Endo Maldives who have it in their bowels, bladder, intestine or rectum even”.

The issue arises when gynecologists who do not have the formal training to address the spread in other systems cut open a patient and perform surgeries. Endometriosis surgeries are typically successful when performed by an endometriosis specialist surgeon to successfully remove the little cells that have spread across large areas. There have also been cases where endo sufferers are also advised by medical professionals to remove the uterus entirely due to misinformation.

“Despite common belief, having endometriosis does not mean you cannot get pregnant naturally. Yes, according to statistics some people with endometriosis do have difficulty getting pregnant. We have a sister in our Endo Warriors Support group who was advised by doctors to go for a hysterectomy because of severe endometriosis. She was even told by doctors that she cannot have children even if she did IVF. But she was able to have two successful natural pregnancies. Alhamdulillahi. Endometriosis affects different people in different ways. It is not just a diagnosis of infertility”

~ Endo Maldives Exco member Mariyam Shiuny~

Mizna explained how, while the gold standard for endo surgery is excision (where they remove the cells in its entirety from the root), the surgeries in Maldives through  the process of ablation where heat or cold is applied to destroy part of the lining. “When it is not removed from its root and taken out, the chance of recurrence very quickly is high”, she noted.

As for policy, Mizna pointed out that at this time, the national healthcare insurance policy Aasandha does not allow travel abroad to seek treatment for endometriosis. The notion among policymakers is that there is adequate care available in Maldives. As for approaching policymakers it is hard to make a case in the absence of official statistics.

“We have  focused on making the public and patients more aware of the disease but right now the battle is also towards making the health sector more aware and advocating. In the end they are the people we have to go to with this disease”

~ Founder of Endometriosis Association of Maldives Fathmath Mizna Ali ~