The pain began when Rehanna Ramdath got her first period at just 10 years old. By the time she was a teenager, it was debilitating.
“From the time when I was about 13, every month I would get sick, I would be doubled over in pain,” she said. She would visit the emergency room “like clockwork” and be given pain medication, then sent home, despite also having problems with her bowels and nausea.
It took doctors years to figure out what was wrong — at first, she says, she thought she just had cramps. The diagnosis, which came when she was 16, was endometriosis: a common but little-discussed condition affecting an estimated one in 10 women.
Ramdath’s case was particularly bad and led to severe complications, including multiple surgeries over her lifetime and the eventual removal of her appendix, her uterus and pieces of her bladder. She still experiences pain and anxiety related to her illness.
Although endometriosis is not fatal, it can cause severe pain that interferes with a sufferer’s normal life, or even infertility. Here’s what doctors want people to know about the condition.
What is endometriosis?
Endometriosis is when cells that normally make up the lining of the uterus are found elsewhere in the abdomen, usually in the pelvic region. This can cause severe pain, particularly during menstruation, or it can contribute to infertility, said Dr. Sukhbir Singh, vice-chair of gynecology at the Ottawa Hospital.
In Ramdath’s case, these cells eventually wrapped around her bowels and some other organs.
What are the symptoms?
The most common symptom is extremely painful period cramps, according to Dr. Catherine Allaire, medical director of the BC Women’s Centre for Pelvic Pain and Endometriosis.
Other symptoms can include pain during ovulation, pain during intercourse, and in more advanced cases, pain during bowel movements or urination.
Finally, some patients don’t have any pain at all and only realize they have the condition when they’ve been trying to get pregnant but can’t, she said.
When should you see your doctor about menstrual pain?
Menstrual cramps that are easily treated with over the counter medication like ibuprofen likely aren’t too serious, Allaire said.
It’s when that pain interferes with your life that you should consider seeing a doctor, Singh said.
“Any pain that results in missing time off work, off school, that requires regular medication use to control, isn’t normal.”
“For most of my teen life, I had no life,” Ramdath said. “I did everything around my period.” When it was coming, she made sure she would be at home in bed with her heating pad and pain medication, and not far from the toilet. “That was how I would carry my whole life out.”
Allaire says that many women with endometriosis end up arranging their lives around their periods in order to be able to cope. If you find yourself doing this, or if you have nausea, vomiting, or have to be in bed all day with a hot water bottle, you should bring it up with your doctor, she said.
If it affects so many people, why isn’t it more well-known?
Endometriosis can be difficult to diagnose – taking an average of seven years from when symptoms first appear. But doctors think that the delayed diagnosis isn’t just because the disease is tricky to spot.
“There’s this normalization of menstrual cramps that’s occurring in general society that’s leading young girls and teenage girls to be told that it’s normal to have cramps that make you faint and missing school and all that. It’ll get better, it’ll pass,” said Allaire.
This might cause a delay in a patient seeking care, as does a general reluctance to discuss issues relating to menstruation.
WATCH: It’s a condition that impacts nearly ten per cent of Canadian women but it was over a decade before Calgary mom Casey Clow-Domenjoz realized endometriosis was causing her debilitating pain.
In Ramdath’s case, the delay in her diagnosis and treatment allowed her condition to get worse. She believes that had she been treated sooner, she wouldn’t have developed nearly as many problems.
She urges women to seek treatment as soon as they believe it’s a problem.
“It’s not in your head and a lot of times you feel it’s in your head. But the pain gets worse, the problems get worse.”
What should you ask your doctor if you’re experiencing painful periods?
Both Singh and Allaire say that you should emphasize to your doctor how the pain is interfering with your life.
You should say how long you have been experiencing pain, what aspects of your life have been affected, whether you have pain during intercourse or pain with other systems such as your bowel and bladder, said Singh.
Although it’s a chronic condition and there is no cure, there are a number of ways to treat the symptoms, depending on your precise condition. This might include drugs to suppress menstruation, or in more serious cases, laparoscopic surgery to remove the affected cells.