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Living with endometriosis


Living with endometriosis

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Most women who suffer from endometriosis pen life experiences of this “mysterious” disorder every night in their diaries. They share their fear of existing in a world where the symptoms of their condition are downplayed into nothingness and there is no support to take comfort in. EASY magazine talked to Krystle Carew about the ups and downs of living with the misconceived condition.

ENDOMETRIOSIS IS A disorder affecting one in ten women you know. The tissue that lines the inside of the uterus is called endometrial tissue and when it grows outside of the uterus the patient has endometriosis. The tissue may end up growing on fallopian tubes, ovaries, intestines, bladder and other areas.

When endometrial tissue is where it is supposed to be, it thickens and sheds once a month when women menstruate; but if you have endometriosis there is no exit for that tissue. When Krystle was diagnosed with the condition, all she could do was cry.

“I cried before it sunk in,” she said during the interview at the boardwalk, Hastings, Christ Church.

“Previously, I got a laparoscopy and I knew what it was for after I did some research; so when I got the news I knew what endometriosis was. I called my mum and other family members and it was a bit depressing at first but my family helped me to cope with it.”

Krystle said that after November 16, 2007, her life changed; she could no longer be as active as she once was.

“I liked running and participating in 5K walks but all that had to stop and I had to stop going to the gym because working out gave me more pain. I would still exercise now but not as much as before.

“And my weight actually fluctuates too. One minute I weigh 150 pounds, then a next minute I am 200 pounds, which is the heaviest I’ve ever been in my life.

“I try to exercise and eat properly but it doesn’t always work out like that.”

The 30-year-old explained how this affects her self-esteem.

“When you look in the mirror you tell yourself you are kind of fat and when people see you that is the first thing they say. It is sad that’s the only thing they could say. They can’t even tell you that you look nice or ask how you are doing.”

Kyrstle has endometriosis on both ovaries and she also has Polycystic ovary syndrome (PCOS) as well. She said endometriosis mostly affects the left lower half of her body while PCOS affects the upper. She realised something was wrong after she gave birth to her son in 2004. She maintained a slim figure before, during and after pregnancy but suddenly gained a lot of weight. Although her situation may seem sad, Krystle is one of the ‘lucky ones’.

Many women with PCOS and endometriosis suffer year after year before their illness is diagnosed correctly; it takes an average of seven years to be diagnosed and both conditions can lead to infertility.

“I had PCOS from the time I was a teen but after I got my son I used birth control and it got worse. I consider myself lucky because he came naturally but afterward I had to get a blood transfusion as I became anaemic.

“I lost a lot of blood but the side effects from taking medication and hormones helped me to gain weight.”

Women with both conditions are often misunderstood because it is difficult relating to their pain.

“With my endo the pain radiates right down my leg so most times I can’t move,” said Krystle. “And I can feel when my ovaries are swollen; it feels as though they are pulsing.

“It gets so painful that some days I have to call in sick to work because I have really bad cycles.”

Krystle admitted, however, it is not a case of people not being compassionate on purpose but rather they don’t know what to do to help someone with PCOS or endometriosis.

“Some people understand but they don’t know what they can do or how to react when you’re in pain. They would give you painkillers and feel that should work or tell you sit and relax and bring you food but there is nothing much they can do to help.”

This is why the event planner believes awareness about both conditions is critical.

“Most of the businesses in Barbados are made up with a workforce of mainly women and there are issues once a month between management and women because they cannot come to work. If you could educate people that it is more than just a bad period it would be very helpful toward women with PCOS and endometriosis.

“I know of cases whereby people call in sick and their boss is, like, “Because of a period?” People shrug it off, like, “It’s just a period so I don’t know why you are acting like that”.

However this is not the case with Krystle and her boss. In fact, she said she and her boss have a great relationship.

“My boss is very understanding; she knows my conditions. I am fortunate to have an understanding boss and co-workers; I honestly don’t know what I would do if they didn’t understand.

“My mum even pitches in too. When I am unable to help my son she would take care of him and he would help himself in certain areas as well.”

Krystle is therefore advocating for the employee-employer relationship to change and be more accommodating toward women with PCOS and endometriosis. She said she is frustrated when she hears, “Women only make up excuses to stay home.” She explained endometriosis can be found in places far away from the pelvic area such as the brain and lungs and therefore should be taken more seriously.

Although she has been living with both conditions for her entire adult life, Krystle does not let them hold her back from enjoying life. She told EASY about her passion for cooking.

“I love to cook, I am always in the kitchen and my mum is very excited when she sees me doing what I love.

“So also being a caterer helps comfort me, especially when I am having a bad day. When I am having pain and I go into the kitchen I don’t feel anything; once I keep moving I am fine . . . . But from the time I lie down and get too relaxed, that is when I really feel the pain.

“Cooking takes my mind from the pain.”

Last September, Krystle and a group of other women came together and formed the Barbados Association of Endometriosis and PCOS. Under the guidance of president Julia Mandeville, the members have joined their Caribbean and international sisters in a month of activities to spread more awareness of these conditions.

“Sometimes you feel so alone because you have no one to talk and relate to and when Dawn Williams, our treasurer, started a blog called Endo Facts in 2010 that helped people like me to cope with the pain and feel like we are part of something together.”

Pelvic health physiotherapist and yoga instructor of the association, Jasmine Evelyn, explained why it is important for women who do not have PCOS and endometriosis to stand in solidarity with women
who do.

“Women do not like to talk about any health issue below the belt and I think the organisation is playing a key role in breaking the silence. We are trying to get women to be diagnosed as early as possible because in most cases they only find out when it is too late.

“A lot of women are only diagnosed when they are trying to have children and then they realise they can’t, so we are trying to make PCOS and endometriosis just as widely known as cancer,” said Evelyn.