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A Trinidadian Woman’s Journey with Endometriosis – Part 1

BACKGROUND STORY

“Hi, I’m A Trinidadian Woman with Endometriosis. I’m a 35 year old Caribbean woman who has suffered and still suffers at the hand of this condition. ” – Jay.

For those of you who don’t know, Endometriosis is a dreadfully painful condition where tissue similar to the uterine lining grows outside of the uterus. This pain worsens during and can be present before or after menstruation. This condition may be minimal, mild, moderate or severe. Based on its severity it can affect your overall health and general well-being.

MY STORY – Part 1

I was diagnosed with this condition at the age of 24 but had been suffering for up to 13 years prior. As a teenager during Secondary/High School I suffered through monthly period pain with no painkillers for aid. I endured this for years as I was told that this pain was normal. I was eventually introduced to medication which actually increased the blood flow during this time.   

During my latter years at University the pain exacerbated. I recall one time my heavy flow caused me to be drenched in blood with no change of garments and having to sit through a 3 hour examination as though nothing was wrong. I simply tied my jacket around my waist and proceeded as per normal.

There were countless moments of feeling unwell on non-period days, exhaustion and absenteeism from classes and eventually work as I entered the work world.

Pain became part of the norm for me and increased as the days went by. Eventually after seeing more than one Gynecologist along with having multiple ultrasounds. I was told that I have Endometriosis along with large endometriomas or “chocolate cysts” in both ovaries. Surgery was needed immediately before any kind of rupture occurred, which could potentially be life threatening. ………………………………to be continued

This is the first post on my new blog. I’m just getting this new blog going, so stay tuned for more. Visit my Facebook Page for daily updates on Women’s Health Topics and more. https://www.facebook.com/theEndoSAGA/

The “New Norm”

An already difficult situation now becomes more difficult. The limitations that pre-existed still exist but now with additional hurdles. Your world has been turned upside down by this imposter. A new norm has been imposed on everyone. It’s either you adapt or face the consequences. Some instances more dire than some but all share a common ground with common concerns. How do we live now? What kind of existence will there be from now on? Will things ever be the same again?

For a health-afflicted person it is already difficult to navigate day to day routines and obligations whilst dealing with physical restraint, say Endometriosis. Fighting the demons that may raise their ugly heads from time to time yet managing to make it through everyday and hoping for a better tomorrow. Now here comes an unwanted visitor, “Corona/Rona/Coronavirus/COVID-19” out of nowhere like a thief in the night, imposing herself on your life, giving no warning and no time to prepare.

If you’ve already been confined to the four familiar walls of your home due to illness then “stay home/work from home” is not a foreign concept. Now the rest of the world gets a taste of your reality. You think to yourself maybe now colleagues, family and friends will understand “your norm” – their “new norm”. A world that’s already filled with versions of social distancing and cleaner habits. Unfortunately because of Rona, now others get to experience the effects of loneliness and withdrawal symptoms which can result in emotional and psychological trauma for which they were not prepared.

When you thought you were falling behind all this time, you were actually ahead of the masses. Ain’t life something else. You’ve already adjusted to this “norm” to which others are now acquainting themselves. Who knew? It’s unfortunate that it took a virus to make others understand your reality.

Change is a constant factor in life with humans being adaptable and being able to navigate almost anything. At a time like this like any other, solutions will be found, connections will be made, conflicts will be resolved, truths will emerge, innovation will be used, time will be valued, life will be valued, damages will be undone, time will reset, bodies will recharge, and the list goes on and on. The burning question is “Why does it have to take a pandemic for these things to take place?” Some say that we’re ahead of our time but reality suggests that we may be more behind than we thought. We may have a ways to go but we are resilient and our New Norm will very soon be a thing of the past.

“A Healthier Woman is a Happier Woman” – The Endo SAGA

Painful Reminder

This Endometriosis journey is a trialing one. One that challenges the core of your being. It challenges your ability to cope, to overcome, your mental and physical strength and your determination. It will defeat you if you let it.

A few months ago, I was reminded of the beast that Endometriosis could be but moreso I was reminded of the David within me (David and Goliath). Upon conducting business with a client, a sudden pain was felt easing on. It eased its way into my conversation and interaction like a thief in the night. So much so that I couldn’t hide the discomfort that I felt at that moment. I hurriedly ended the meeting and proceeded to make my way home where things quickly exacerbated.

Little did I know that this commenced a week of hell that I was about to experience. The pain was unsuspecting and came with the same intensity randomly everyday along with withdrawal bleeding and proceeded what one would consider normal daily bodily functions.

Due to my use of Visanne for over a year and a half I had forgotten what I would imagine hell felt like in my body until this moment. I questioned the sudden change, intensity, frequency and duration of this experience. Perhaps one would question my sanity at the time but despite the tear filled ordeal in the midst of it I still managed to thank the Almighty for it in spite of the pain that I was experiencing. There is purpose for all things.

After assessing the situation, I realised that there was only one change that preceded this. I added something different to my diet. It was Bay Leaf. I consumed this tea almost everyday, twice a day for about two weeks prior. My research revealed that Bay Leaf can be taken to induce regular periods. Who knew? I surely didn’t. Click: https://www.plantshospital.com/bay-leaf/ . As one would imagine I haven’t touched the drink since, however this does not take away from its great properties. It is important to note that just like anything else research is important and also use in moderation. Thankfully, the crippling pain and ordeal ended after a week and my version of normalcy returned.

My Reminders: 1. Research everything (as much as it can be done) and consult a Physician (if possible) before consumption especially when already on Medication. The interaction of chemicals despite being “natural/herbal” with certain medicines can be detrimental. 2. We are Overcomers, already equipped with so much strength within us that exceeds what we think. A positive attitude and perspective will get us through anything.

“A Healthier Woman is a Happier Woman” – The Endo SAGA

Suffering with Endometriosis in Trinidad and Tobago

Now the number of sufferers are increasing as knowledge about Endometriosis spreads across Trinidad and Tobago and the world by extension. Many unanswered questions remain about the origination of Endometriosis. Is it diet? Is it hereditary? Is it due to a type of deficiency or malfunction of an organ? The one thing that’s for certain is the havoc it wreaks on its victims’ bodies and interference in their lives. As if Endometriosis by itself isn’t bad enough it seems that Endometriosis also brings on or may have a link to auto Immune illnesses.

In recent years, non-profit organizations like the TTEA (Trinidad and Tobago Endometriosis Association) have made efforts to edify citizens on this illness, holding seminars in schools and utilizing other forums. Doctors, particularly Gynecologists, though not specialized in Endometriosis have been making attempts to treat an increasing number of women, however this may be doing more harm than good especially in more serious cases.

This is a new arena for both Doctor and patient and so leaves the patient at the mercy of inexperience, inappropriate treatment of Endometriosis and uninformed and incorrect recommendations. This is to the detriment of sufferers creating more devastation. These recommendations have included hysterectomy, cauterization instead of excision surgery and even open surgery as opposed to laparoscopy.

Due to the great expense involved in treatment of Endometriosis, most Trinidadian women opt to join a Public Hospital Women’s Clinic which to some may not be the most desirable for checkups or even surgery. Limitations are a great reality as necessary surgical equipment for up-to-date procedures may not be available and the waiting list to receive required tests and receive surgery can extend up to a year or longer. This situation is definitely a ridiculous one and creates greater strain on women.

Making a decision to go to a Private Hospital for surgery is a highly expensive one as bills can run up to $50,000 and up depending on the hospital, surgery type, the severity of the issue and the Surgeons needed. Seeking treatment abroad is out of sight for most. In Trinidad, there are no special Funds, Reserves or Grants set aside to assist women in need of major treatments/surgeries or in dire health situations. The choices are limited and so persons in emergent situations may either publicize their issue in the hopes that good samaritans will patronize or hold fundraising events if they can be afforded. Otherwise, most simply settle for the default as most can’t withstand the expense.

It’s a plus that Trinbagonian ladies are becoming more aware of their options, however the suffering still exists and the affordability is out of reach. There are now medications, such as Visanne (Dienogest) created specifically for the treatment of Endometriosis as opposed to the usual recommended GnRH Agonists or other contraceptive pills and coils. Of course, these medications are imported and pricey.

Though disturbing, due to the prevalence and reoccurring need for Endometriosis treatment or surgery it may appear that some Doctors may purposely not use the most effective methods that may be more definitive as a solution in order for financial benefit. However, there may be the argument that this may again be due to their lack of expertise and education on the disease and their fair attempts to simply assist a patient within the confines of their knowledge and abilities.

It’s left to be stated that it is clear that bodies within Trinidad and Tobago are making strides to educate the population as Endometriosis becomes more prevalent in women of all ages and the professional medical attention that is required is slowly becoming available and accessible.

It would suffice that Endometriosis knowledge, research and solutions become quickly available and that Endometriosis is recognized by Government bodies in Trinidad and Tobago and across the globe as a chronic illness as it continues to affect the lives of millions of women

“End ENDO in TrinBago.” – the Endo SAGA

Don’t Let The Exterior Fool You

A bright smile carried daily, laughter to fill the air that brightens up the days of others, completion of everyday routines, socializing with family and friends as though in an ideal world where all things are equal and standing in support of others whenever needed. Who would guess that behind those smiles and laughter lies the fears of what’s to come. Who would guess the constant physical pain that plagues each day. Who would guess the waves of sadness and depression where some are stronger and more prevalent than others. Who knew that the slightest off moment or comment could trigger those suicidal thoughts that were always hanging around like a loyal best friend.

Appearances fool most of us. Fixated on the exterior we fail to be observant and meticulous enough to pick up the differences in others’ behaviors or words. However, the cries for help may be subtle they are detectable. Although portraying scenes as great actors and actresses do with perfectly normal conduct, on the interior yearns and screams for love, help, attention and support. Usually fear of judgement and vulnerability hinders the willingness to expose hardships and inner battles. Lying just seems easier.

A sea of loneliness is the common secret and abandonment is the common fear arising as a result of exposure. Suffering in silence is usually the conclusion, whether forced or not. A welcoming environment that promotes openness and comfort is helpful although not necessarily the complete solution.

Don’t be fooled by the perfect appearances of others. Don’t overlook the changes in behavior. Don’t bypass the cries for help. Don’t abandon the signs. Don’t ignore your instincts. People pretend well. Love on your loved ones. Don’t let the exterior fool you.

“On this journey we need to support each other” – The Endo SAGA

“He who feels it knows it” – Bob Marley

Chronic pain is the daily reality for some of us. Until you’ve walked a mile in our shoes, you really can’t identify but only sympathize, just as the saying goes “He who feels it knows it” by Bob Marley.

Being a victim of your own body is a different kind of crime where suffering in silence is mostly the scenario which can feel like a life sentence. This can be a daunting situation for most as your quality of life dwindles before your eyes.

It’s an unfortunate reality when pain becomes a normal part of your daily routine, the old norms become a distant memory and also when you and the local Pharmacist are now on a first name basis. Pain management rituals including medicine, diet, doctor’s visits, therapy treatments, etc become a necessity and are no longer a simple option.

Pain now not only exists in your body but penetrates your emotions and mind. It’s a harsh reality to bare when the degree of pain dictates every facet of your life. This change can be damaging to relationships due to constant plan cancellations. Some effects can include the onset of other conditions like depression and self harm, which are just other forms of pain. In this case it would suffice to have the right support, mindset and treatment methods. Without them, sufferers can sink into a cocoon of devastation, isolation and resort to the life of a recluse. These can slowly develop overtime and even take years to recover.

Chronic pain sufferers have one main thing in common and that is to be relinquished from an existence of pain and return to the life they once knew without it.

You may ask, how do I know, who am I to speak on this?
Well I’m no Psychologist but speaking from the position of an endometriosis chronic pain sufferer, experience qualifies me as one of the greatest teachers. In other words, “I feel it so I know it”.

“No one should ever have to be alone and suffer in silence.” – the Endo SAGA

Healthier and Happier

My personal experience is that “A healthier woman is a happier woman” but by extension generally “A healthier person is a happier person”. I’m fully aware that this doesn’t always hold true but ideally shouldn’t this be the case? We’ve all heard that when you look good you feel good, but the inverse can also hold true.

A healthier lifestyle may include a healthier diet, habits, thoughts, communication or even relationships. A change which may include all or just a few of these may make for a happier existence i.e a “happier you”.

We all struggle at some point and none of us are exempted from the challenges that life throws at us, especially when it comes to health. None of us really know what our fate will be and when, however any improvement or ray of hope whether vast or small somehow can suddenly change our perspective and then every minute thing now becomes valuable and cherished. Somehow, we become elevated in our emotions and happier in our daily existence.

Ultimately, endometriosis and any other illness or situation can bring about a cloud of despair that snatches our happiness and peace of mind. However, a domino effect occurs when we make small adjustments day by day that will bring about small victories that can result in a healthier, happier you.

“One does not have to relate to the other but we cannot deny that a change in our health can drastically change our life – for better or worse.” – the Endo SAGA

Perspective

What’s your perspective on your situation? Is it positive or negative? Is it inspiring or is it discouraging?

Maybe you have a health issue that has hindered your progress in life? Maybe you received an unexpected diagnosis and the sudden news rocked your world in such a way that you’ve been unable to find your bearings? Maybe you were once a free-spirited person and now you’re crippled by fear of the future? Maybe you feel alone and that no one really understands your situation?

It’s important to remember in these moments that we always have a choice, “freedom to choose our thoughts”. A choice to see the glass half empty or half full. Our choices can steer our future. A choice to believe in better days, the potential to heal, change, success, God and so much more. What we bring ourselves to believe can direct and drive us in a totally opposite direction than where we currently find ourselves.

Perspective can turn your world around – a positive body image, increased confidence, belief that we can conquer anything, mend broken hearts and relationships, achieve what seems unattainable, soar beyond the comfort zone limits that we have set for ourselves, rise to any occasion and even inspire someone and make a difference in their life through our struggles.

Imagine how different, liberated, happier and meaningful our days could be if only we had a better view on things.

“The power of change is not denied to anyone. The key to change lies within us. Change your perspective and change your life.” – the Endo SAGA

A Trinidadian Woman’s Journey with Endometriosis – Part 2

BACKGROUND STORY cont’d

MY STORY

Laparoscopic surgery was finally performed and aftercare treatment consisting of three months of GNRH injections was given. I’m sure this may sound familiar to some ladies. When I thought that my years of suffering would finally cease, the SAGA had just begun. I experienced major side effects such as chest pains, dizziness, menopausal symptoms like hot flashes, sleeplessness and elevated cholesterol levels. To my dismay when I demanded to be taken off this medication, I suddenly experienced lack of motion in my legs accompanied by breathlessness. This occurred for months. How could a procedure designed to assist me seem like such a nightmare?

Fast-fowarding, about a year and a half later the symptoms made their way back and the cycle of menstrual pain, heavy periods and monthly torture eased its way back into my life. This was then followed by more years of trying to figure out a final solution with trials of diet changes, enzymes and other hormone-related medical options.

Unfortunately in 2019, eight years after my initial surgery I am on medication daily and yet again I find myself where I started, staring down the barrels of major surgery once again.

This is the reality of Endometriosis sufferers within the Caribbean and worldwide.

Endometriosis does not discriminate. This is the reason why women of all ages, ethnicities and cultures need to be edified about all aspects of women’s health.

“A Healthier Woman is a Happier Woman” – The Endo SAGA