A family disease

Katrina Alleyne has been living in pain for many years. Actually, she would tell you that her body is growing tired of that intense pain that sometimes causes her to be hospitalized for weeks, as extremely strong medication is pumped into her body.

Katrina often wishes for the day to come when she would get some ease from the painful disorder that affects her reproductive organs.

Twenty years ago, the 37-year-old was diagnosed with endometriosis.

“Sometimes I don’t think people understand the magnitude of the pain I am in. Sometimes I am hospitalized for weeks with this pain. You are in so much pain that you can’t work. I used to miss so many days of work that I had to start working for myself. I can’t plan my life.

“One minute I may be planning to go out and enjoy myself, but the next minute I might be in so much pain that I have to cancel the plans. So you don’t only suffer from physical pain, but you also suffer from that pain of uncertainty. Endometriosis is a serious disease. Sometimes people don’t believe you when you tell them what you go through, but my motto is I am not ‘ovary’ acting,” Katrina said, as she outlined some of the effects of living with endometriosis.

Endometriosis is a disease in which tissue that is similar to the lining of the uterus grows in other places in the body. These patches of tissue are called implants, nodules, or lesions. They are most often found on or under the ovaries, on the fallopian tubes, behind the uterus, on tissues that hold the uterus in place, on the bowels or bladder.

In rare cases, the tissue may grow on the lungs or in other parts of the body. The condition is most commonly diagnosed in women in their 30s and 40s. But it can affect any female who menstruates, often leading to infertility.

Laparoscopic surgery is the only way for a woman to know for sure that she has endometriosis. Katrina, who is known to have one of the more severe endometriosis cases in Barbados, has had many surgeries.

Yes, Katrina’s journey with the condition has been a long road that she is still travelling on. Recently, the young woman with the bubbly attitude sat down with Health TODAY to share what she has been doing to cope with the condition, and also how she has been educating Barbadians about the disease.

Katrina made it clear that despite the pain, she was not giving up on the fight.

“Everybody says that endometriosis is a woman disease, but honestly, endometriosis is a family disease because it affects families, it affects relationships and from experience, I know it can make you lose partners whether you are married or in a serious relationship.

“Sometimes families don’t understand how it is affecting you. Sometimes they are not educated enough to understand why you are always sick, why sometimes you don’t want to have sexual intercourse because some people have it in the vaginal cavity. They don’t understand that sometimes you are in so much pain it is difficult for you to even think,” she said.

Endometriosis can also have a detrimental impact on a woman’s life, Katrina who operates a bar at her St Philip home pointed out. It causes some women to feel invaluable, and may even hurt her self-esteem, she added.

“And then you may have a partner that tells you some of the most derogatory things as a woman. Some women can’t have children so you know you would hear ‘oh, you can’t get pregnant’, and things that make you feel less of a person. For me, after having a partner for 17 years, I would not say everything was perfect, but sometimes situations turn beautiful things into disasters,” she said.

“But what I would say is there is hope out there. I used to always see endometriosis as a curse and one of the reasons why things didn’t work out for me. But I believe it is a blessing because I get to help so many women in Barbados with the condition. I help from teenagers to middle-aged people,” Katrina added.

Katrina is the president of the Katrina Endometriosis Fund Association of Barbados, a registered entity formed to educate the public of this incurable disease, and to help those living with it survive day-to-day struggles that make them sometimes want to let go of hope, and in some cases, even life.

The Association has done many outreach programmes, including fundraising events, seminars and empowering lectures. Her Endo project at the Queen Elizabeth Hospital (QEH) provides women with packages containing personal hygiene items.

“My slogan is always ‘giving up is not an option’. For me, if you give up, it means you have let endometriosis dictate how you want to live your life. I know sometimes you can’t do everything, but just believe in yourself. If you have a key support system sometimes the major things in life seem so simple that you can just snap your fingers and have everything fixed.

“My family is there for me. But there are women who have no one to lean on, no one to depend on, and they need help. Once I know of these women, I try to be there for them,” she said.

The endo warrior believes that the island’s healthcare system is doing its best with the resources it has, to care for women who live with the disease. But she believes that more can be done to support the medical needs of women who have endometriosis.

Katrina is looking forward to the day when the QEH introduces a rapid response centre for endometriosis patients who rush there seeking relief from severe pain. “Most people would have gone to other doctors before they go to the hospital. Sometimes you go to the doctor and you are thinking that the drips the doctor gives you are going to work.

“But then the doctor has to call the ambulance to take you to the hospital because the pain is not subsiding. The pain has to be addressed urgently. Therefore, we need proactive solutions for the pain on arrival at the QEH.”

Katrina recently received the Endo Hero Award 2019, at this year’s EndoFest hosted by the Yellow Cape Endometriosis Association, in New York.

“I am very proud of this accomplishment. I would have been chosen from a long list of women from across the world. It means that the work I am doing here is valued. I want to thank all those who assist the worthy cause,” she said, assuring that Barbados and the world can expect great achievements from her Association.

Endometriosis has no cure, but its symptoms can be managed.

anestahenry@barbadostoday.bb