Inspired by fellow ‘Endometriosis Warriors’ across the world and fuelled by her own struggle with the little-talked of condition, The Endometriosis Awareness and Support Foundation, the first of its kind here at home, is the brainchild of corporate lawyer, Rashani Meegama. The Endometriosis Soldier that she is, Rashani shares with the Sunday Island her chilling experience with the incapacitating condition which propelled her to reach out to fellow Sri Lankan women and young girls suffering silently …

by Randima Attygalle

“When I was 14, I almost passed out in period pain at a mid-term exam. I had to abandon the paper half way to be taken to the school sick room by my classmates where I waited for my mother to come and pick me. With the passage of time, the pain got worse and it was presumed to be just normal period pain. The obstetrician who first investigated dismissed me as a ‘fussy young girl’ who eats too much of oily food and then complains!” recollects Rashani Meegama who is a severe Endometriosis combatant.

Rashani, 41 years now, was first diagnosed with Endometriosis in her early 30s. She would go through harrowing episodes of prolonged pain, confined to bed with pain killers and heat packs. In a nerve-wracking recollection, she relives collapsing and rolling in pain in her lawn. “The washroom visits which I had to muster up so much courage to take, were agonizing due to pain and exhaustion. I would be up at wee hours in the morning with a heat pack when my mother and husband would be exhausted and flat out after attending to me and I would feel helpless, scared and desperate,” she recounted.

A painful disorder where endometrial tissue (the lining of the womb/uterus) grows outside the uterus, Endometriosis most commonly involves ovaries, fallopian tubes and the tissue lining the pelvis. “An extreme case of Endometriosis”, as she calls herself, Rashani is now at ‘Stage four’ of the condition. Still very much an unspoken topic here at home, the disease itself is a mystery she says. Although several theories have been suggested including genetics, retrograde menstruation (when some of the womb lining flows up through the fallopian tubes and embeds itself on the organs of the pelvis, rather than leaving the body as a period) and problems with immune system, none of them fully explain the reason for this ‘confusing’ and debilitating condition.

From crippling pain of body to intangible fatigue and mind fog, the condition can severely affect personal and professional life, job goals, reproductive health and self-esteem. Its symptoms varying in great degree from woman to woman, makes the diagnosis difficult. According to the Endometriosis Foundation of America, the disease affects one in 10 reproductive-aged women (aged 12-52) – an estimated 200 million individuals worldwide, and many often experience a decade-long delay in diagnosis. It is also one of the leading causes of infertility.

The physical, mental and life-altering toll Endometriosis has had on Rashani’s life drove her to champion The Endometriosis Awareness and Support Foundation (EASF) under the banner ‘Fight like a girl’. A corporate lawyer by profession, this life crippling condition has robbed so much from Rashani’s life. The excruciating pain accompanied by migraines, irritable bowels, joint and back pain, nausea, brain fog, excessive mood swings, infertility related issues, weight gain, and even bouts of depression- all by products of her condition, left her professional life at the receiving end, forcing her to give up her court practice.

“Even a small court visit would keep me tied to bed with severe migraine caused by heat, stress, and general fatigue. There were times when I had to end up in Emergency Care with injections to mitigate the pain coupled with suppositories. With all this, it would still take about five days for me to completely recover.”

No longer be able to hold to a ‘regular job’, Rashani finally created her vocation around her disease and related issues by setting up two small-scale law firms. “This way, I could have my own time and take my own leave and mercifu

 missed out on many personal milestones as well as my social life,” says the vivacious lady whose smile and warm persona are infectious. “I was so sick when I was sitting for my Masters in Law and I missed out my graduation as I had to go through emergency surgery.”

lly it has worked out well,” smiles the Endometriosis trooper that she is today. “In my struggle with the condition, I have

The girl who never missed a party and was often the last to leave one muses: “friends found it difficult to understand why I would go into a shell and stay away from gatherings, parties etc. Besides my pain struggles, I also found it difficult to make people understand my difficulty in coping with daily life. Even simple chores like doing groceries is impacted due to fatigue the condition entails. The biggest issue was that it was a debilitating disease which took a hit in all areas of my life but it was an unknown and unspoken disease which resulted in more frustration confusion and misunderstanding medically and personally.”

Inspired by Padma Lakshmi – model, author, actress and television host rolling into one and the Co-Founder of The Endometriosis Foundation of America, Rashani, set up The Endometriosis Awareness and Support Foundation (EASF), the first of its kind here at home to galvanize passionate individuals to rally around it and thereby lend a voice for the cause. “One need not necessarily be an Endometriosis fighter, anyone committed to this cause either at personal or professional capacity could come join hands with EASF.” Inspired by Endometriosis warriors like Padma Lakshmi whose experience drove her to take a personal shift in her battle with the condition, Rashani has devised her own coping mechanism besides clinical interventions. Eating healthy, indulging in physical activities she enjoys, meditation and music had made wonders in her life.

“By raising awareness in terms of the disease, its symptoms and treatment options, EASF aspires to let the rest of society know how much women with Endometriosis go through and thereby create better communication and support at the school, family and public level, to let women in this predicament know that it’s normal to feel this way and that they are not abnormal or alone in this battle and to initiate a strong support network and improved coping mechanisms.”

Although the world is yet to find a cure for Endometriosis, it could be successfully managed, notes Rashani, if diagnosed accurately with the right team of medical practitioners on board- be it western, Ayurveda or alternate medicine. Yet it is never on a platter, says the ‘Endo-Fighter’ whose platform seeks to be a harbinger of hope and guidance in disease recognition

, treatment options and lifestyle enhancement. Empowering women with Endometriosis and their families to make informed decisions on medical and child bearing options, to help them improve their quality of life are also on EASF’s mandate.

Passionate to ensure that both our young girls and older women are aware of Endometriosis and that period pain may not always be a trivial ‘girl issue’, Rashani urges to be mindful of heavy periods, unusual weight gain in young years- early markers which ought to be flagged and investigated as she says. EASF, although still in its infancy, is confidently positioned to make a positive change in the lives of Sri Lankan women silently suffering with Endometriosis and its ripple effects. EASF also hopes to facilitate more research studies on the subject locally.

Enabling better understanding of the condition at family and corporate level is also envisaged by the Foundation. While encouraging women battling with it to ‘listen to their bodies’ and afford ‘plenty of ME time’, EASF’s founder avers: “don’t build walls around you, talk to someone about your condition outside your doctors. Never let the condition control your life, goals and dreams. Most importantly, don’t let it steal away the woman in you….”

For those who would like to rally around The Endometriosis Awareness and Support Foundation, please write to LankaEndoWarrior@gmail.com