Story Updated: Jun 21, 2013 Photo: Jermaine Cruickshank Arlene Alvarez is one of the many women throughout Trinidad and Tobago battling endometriosis. One would not know that, however, upon the initial glance. In fact, when I met with Alvarez last Monday at the Express House for her interview, she seemed like any other individual. Even more, the orange tint of her mainly brown, strapless and elastic dress finished off with orange sandals mirrored the small ray of hope that is part of Alvarez in spite of the dark and ominous cloud of her illness – a hope that shone through during the interview. That Alvarez can still smile despite all that she has been through is no small feat. As Alvarez herself noted during the interview, her life is akin to a Lifetime movie, except that every moment is painfully real. It is doubtful that this 31 year old from Princess Town had suspected the misery that awaited her in the future. For the most part, Alvarez had led a fairly normal life – fairly because she had been experiencing painful periods for a while, symptoms of endometriosis, before her official diagnosis on December 17th 2010. “At the age of 21/22, I could run up and down the stairs, now, it is difficult. Alyssa would tell you – Alyssa is her best friend who sat in on the interview – that I don’t like to walk. It is tiring for me,” Alvarez stated. In fact, in spite of the crippling pain every month, pain that had been dismissed by relatives as bad cramps, Alvarez had continued to go on with her life and married in 2006. “He met me while I was a store clerk at a store on High Street, San Fernando,” she began. It was love at first sight for him because he used to stalk me. It was like a wolf looking at a sheep. He just used to stand there and stare,” she said. The following year, she enrolled in COSTATT to do a degree in HR management. . She could only complete the first two years of her degree, however, for her disease had begun to worsen. It had gone undiagnosed for so long. So in 2009, she left school. The reality of her illness had started setting in and in 2010, her lungs collapsed which resulted in her hospitalisation, and then her diagnosis. Alvarez has endometriosis of the lungs or thoracic endometriosis. “In 30 years, doctors have not seen this. My doctors treat me as if I’m rare, because lung and brain endometriosis (brain endometriosis is referred to as cerebral endometriosis) are rare,” affirmed Alvarez who has been told by one doctor that she has a very bad case of it. In effect, on more than two occasions, Alvarez’s lungs had collapsed – the disease has engulfed the right side of her lung. Furthermore, she faces the possibility of never having children. As a result, she has visited IVF clinics to find out more about the possibility of preserving her eggs. “Living with endometriosis doesn’t really allow you to have a life. I remember screaming in public because of migraines. You can’t raise your hands, you can’t cough, you can’t sneeze because it is so painful. I remember having to crawl to the toilet because of the intensity of the pain, not being able to get off the bed and the bed being covered in blood…The disease has four stages, I am in the fourth stage,” Alvarez asserted. In this stage, the organs of the individual fuse together, so that it brings on other diseases like arthritis. As regards treatment for the disease, Alvarez presently has to have monthly injections of Zoladex, which releases the hormone GNRH into the body. It stops the period. She has also had surgery – Pleurodsis or Plural Abrasions with Talic – to avoid having to continue the Zoladex injections, for prolonged use of Zoladex may lead to brittle bones, which Alvarez is currently experiencing. In four months, when she stops the Zoladex, which is supplementing the surgery that was done, she hopes to have her first period and to go through it without her lungs collapsing. If her lungs collapse while she is on her period, then the surgery has not worked. Alvarez, who is now divorced (her husband began cheating two weeks after their 2006 marriage and had eventually become verbally and physically abusive), spends her time trying to raise awareness of the disease. Unfortunately, not much attention is given to the disease here. For instance, March 4 is endometriosis day across the globe, but “there was nothing done in Trinidad and Tobago,” as observed by Alvarez. She and her best friend Alyssa had some yellow ribbons, pens and T-shirts done and handed them out on that day. Yellow is the colour worldwide for endometriosis. “It starts from school. Get your daughters tested please, take them to doctors. Don’t boil any bush tea to give to them,” she referenced the tendency of Trinidadians to treat all pains as minor and solvable with bush tea. It is a fight that Alvarez means to see through to the end.Furthermore, her friend Abisha, also an endometriosis sufferer, has started an endometriosis association that she will soon be registered. Alvarez is looking to begin one soon, but one for the friends and relatives of endometriosis sufferers to help them cope with the illness and all the difficulties it brings. She hopes to register it next year.Alvarez remains undaunted by endometriosis – thoracic endometriosis to be exact. In one month, she will return to school to complete her degree. It does not appear as though the disease has Alvarez in its grips, more like Alvarez has the disease in her grips.Individuals interested in becoming involved in this cause can visit the website on Facebook at lungendometriosis/thoracicendo. Original Print: Trinidad Express Thank You for reading x x x
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