At the peak of her childbearing years, Dawn Williams had a hysterectomy. It had nothing to do with a lack of desire to become a mother; the pain she had suffered from was just too much to bear.
But the 32-year-old admits having the massive surgery wasn’t a difficult decision to make.
Endometriosis is a condition in which uterine tissue grows outside the uterus, causing pelvic pain. The pain is at its peak during a woman’s period.
Speaking openly and directly about her experience during an interview at her St. Lucy home, Williams told Barbados TODAY about enduring almost two decades of pain and having to rely on medication for temporary relief from the condition which affects women worldwide.
It all started for Williams around the age of 13 when she began her menstrual cycle. In those early teenage years, she thought there was nothing unusual about the pain.
“I honestly thought that that was the normal pain to have,” she said, shaking her head.
But it was experiencing a blackout while delivering a presentation as a student at the University of the West Indies that Williams began a journey to unravel the mystery of what was causing the intense pain.
She went knocking on the doors of physicians, seeking answers, until eventually she visited the office of gynaecologist Dr Hugh Thomas who suggested that she might have endometriosis and would need surgery to diagnose it.
“In 2006, they found that I had it. I was never told what stage I was at, though there are four stages. I don’t think that I am at a severe stage,” she said.
“But the thing about endometriosis is that the stages are not correlated to the pain. You can have someone at stage four and they are okay but someone at stage one is going through hell. It is all about location and if it is sitting on a nerve or a particular organ,” Williams explained.
After the surgery, she was told that the majority of her endometriosis was situated near her bowel and could not be removed because of its location.
In 2008, she travelled to Florida to go under the knife again, at the hands of an endometriosis specialist, in hope that she would get relief from the effects of the condition.
“I had [the surgery] and everything was good for about three to four months and then the pain returned. I could not believe it because I have heard of people who had years without pain after they had this type of procedure done. He did about four different procedures in that surgery, cutting some nerves to help reduce the pain,” Williams recalled.
The young woman was desperate for permanent relief and went the route of trying natural remedies after monthly injections were just not working.
In 2009, Williams was rushed to the hospital in severe pain and underwent emergency surgery. Doctors thought there was a problem with her appendix, but it turned out to be the usual cause of her pain.
Williams decided she had enough and that painful episode made it very easy for her to make the decision to have a hysterectomy in 2014.
“I just could not live with it any longer,” she said.
“I really don’t know if I could have children. The decision was easy after years of frustration. I just said ‘man take out everything’ because the pain was too much. The pain was even affecting my work because I was constantly in pain.”
Today Williams is regretting having that hysterectomy.
“…Because the pain is actually worse. Some of the endometriosis is still in there. When I had the [surgery] it cut some of the nerves and there is actually nerve pain that the doctor is telling me may be there for life,” she explained.
Williams explained that she has a boyfriend who is already a father of one, and he is very understanding about
“I know that I can’t have children. I state my claims early. Even with applying for work, during the interview I let you know ‘this is what it is, I have this condition and I expect to be out of work at least two days a month, sometimes more, sometimes less’.”
Williams is still in pain – sometimes so much that it feels like a knife is cutting into her tummy – and it has led her to making major changes. She has quit her job as an internal auditor to become self-employed.
But the former Queen’s College student was quick to note that there were women experiencing worse pain.
In a quest to get in touch with other women in the same boat, Williams started a Facebook page, Endo Facts, two years ago. That page, which has attracted women locally and internationally, seeks to share information about endometriosis and allows women to talk about their experiences.
Williams, who is working towards establishing an endometriosis association, said she wants women to understand that unbearable menstruation pain is not normal and should be checked out.
“The symptoms for endometriosis are the symptoms for a lot of other illnesses. The earlier you get checked the better. It can grow anywhere, even as far as the brain or anywhere in the body. Endometriosis puts you at a higher risk of developing endometrial cancer. Yes, it is something you want to know about,” said Williams in a serious tone.
“I realize here that doctors tend to only treat pain rather than the holistic approach. There is actually a diet for endometriosis which is essentially an inflammatory disease. So you want to reduce inflammation as much as possible. So things like wheat and dairy, soy and red meat are things that you should cut back on. But it is a really expensive diet. It can be a bit rough but there are some decisions you have to make for yourself,” she added.
After years of unsuccessfully fighting the condition, Williams is at a point now where she is getting used to living with it.
“Sometimes it would hit you for six, but you are getting used to the fact that okay, this is my reality and you do things to make life easier,” she said.