Nurses and midwives are being urged to help end the silence on endometriosis.
Every March Endometriosis Month takes place across the world to create awareness and raise funds for research and education.
Endometriosis Australia’s EndoMarch 2019 National High Teas are taking place in capital cities across the country on Saturday 30 March.
Endometriosis affects an estimated 176 million women worldwide.
Lucy Sandercock, 20, from Adelaide is among the one in 10 women who suffers from the debilitating condition.
Lucy was 15 years old when she first got her period and accompanying pain that left her unable to walk every month.
“I always had right hip pain through my whole cycle, from ovulation to my period. For 24 hours I couldn’t walk. I couldn’t go to school. I’d spend a couple of days in bed. For a 15-year old that wasn’t something I wanted to be doing, I wanted to be with my mates. I was always told I was being overdramatic and that it was normal period pain so I didn’t do anything about it.”
Two years ago the pain worsened, and extended to Lucy’s whole stomach with pelvis cramps and bleeding.
“The doctors kept telling me it was normal period pain but I thought no, something is not right. It’s really hard to push doctors and your parents when you are this young but I was in enough pain to be able do it.”
Lucy went to a Women’s Health Clinic and had a full women’s health checkup.
“They thought I had Polycystic Ovarian Syndrome (PCOS) but I didn’t have any of the symptoms. I had all my bloods taken, testosterone and hormone levels checked. They thought I might have a STD. No one ever said it could be endometriosis.”
An ultrasound revealed a small polyp on Lucy’s ovary.
Pre-hospital Lucy was told by her gynaecologist she was going to have a 15-minute laparoscopy to remove the polyp.
“When I went for the surgery the nurse said ‘you are having substantial surgery’. I said, ‘No, I’m having a 15-minute laparoscopy’. I had three and a half hour surgery, they found severe bowel and bladder endometriosis. I went from having a suspected STD to severe endometriosis.”
Lucy had the surgery four weeks ago and has been re-admitted to hospital for additional complications with the insertion of a mirena for prevention of endometriosis.
“No one tells you what it’s going to be like afterwards. I have ongoing bleeding, cramps and pain. I have been told it will settle in [the mirena] after three months.
“The worst part is that I am at really high risk for infertility. I am so young, it’s very confronting. I am having to question things I haven’t thought about yet and didn’t think I’d have to talk about at this age.”
Lucy had surgery at Burnside War Memorial Hospital, three weeks after seeing the gynaecologist.
Public hospital waiting lists are four to five years, she says.
“You can wait that long while your fertility is being affected. Women are waiting too long for surgery – potentially women who may not be able to have children.”
Up until the surgery, Lucy says she didn’t know anything about endometriosis.
“It wasn’t until I was out of surgery that I got some information on it. I didn’t know it is a chronic illness and is incurable.”
General awareness about endometriosis in the community is poor, she says.
“Some people think endometriosis is a bad period. They don’t actually know what it is. One woman said to me ‘Oh, this happened to my daughter, she had bad period pain. It’s ‘no, this is something bigger than that’.
“It’s really hard to convince some people how terrible it is. Some days I cannot do anything. People can’t see it; they say ‘take some panadol’. It really annoys me that I was told to ‘harden up’ and that ‘it is nothing’.
“I think period pain should be taken more seriously. Let’s not downgrade it but give women the space to say, ‘I’ve got a problem; something’s just not right’ and someone to say ‘Tell me what’s going on’.
“There needs to be more awareness, including the discussion around endometriosis. “’Let’s talk about it.’ ‘Have you heard about endometriosis?’ ‘Could it be this?’ “Not all endometriosis pain is the same, it varies from person to person.”