"It's Just IBS"
Shirley Forrest* remembers back to when she was only 12 years old, how the pain was so bad sometimes, she would almost pass out. "God! It felt like I was being stabbed with a knife, from inside my body," she recalls. When she turned 13, her mom took her to her regular family physician who said Shirley had to accept that this type of pain was part and parcel of becoming a woman and that she needed to learn to cope and live her life in spite of the agony.
But Shirley couldn't focus on her homework and often had to miss school. During the following decade she lived on painkillers, made good use of hot water bottles and heat patches, and tried breathing exercises. At some point, another visit to the doctor led to Shirley being told her pain was, "just IBS."
Thank goodness for the internet. It finally occurred to Shirley, at age 23, to Google her symptoms. What do you know? The word endometriosis came up in hit after hit.
Endometriosis is a disease in which tissue resembling that found in the lining of the uterus grows in other areas of the body, most often in the pelvic area and around the ovaries. Doctors still aren't sure why this occurs.
During the course of a woman's cycle, hormones stimulate the tissue cells. This stimulates tissue growth which is followed by degeneration and bleeding, just as in the menstrual period. This makes for excruciating pain and extra-heavy periods. Since the tissue has no way of exiting the body, in addition to pain, inflammation occurs which may be followed by cysts and the formation of scar tissue.
Sometimes affected organs will adhere to each other, for instance the ovaries may become stuck to the bowel. This causes chronic pain plus bowel symptoms. Women with endometriosis may also have problems of the bladder and uncomfortable sex, not to mention infertility.
In Britain, it is estimated that 2 million girls and women have endometriosis. But the National Endometriosis Society believes that almost 70% of them are incorrectly diagnosed. Women with endometriosis may be told they have irritable bowel syndrome (IBS) or that the pain is all in their heads, which suggests mental health issues or hypochondria. It tends to take 8 years from the time a first complaint is made to a general practitioner until a woman receives the correct diagnosis. In the meantime, a woman's life is pure misery.
After Shirley found out about endometriosis during her internet search, she saw another doctor who told Shirley that her pain was normal and that she was too young to have endometriosis. Many doctors persist in the erroneous belief that endometriosis affects only women in their 30's and 40's. But Shirley decided she wanted a second opinion. At last, a gynecologist performed a laparoscopy and confirmed what Shirley already knew: she had endometriosis.
Philip Kaloo, a spokesman for the Royal College says, "[Doctors] are wary that the procedure might not find any endometriosis. But I see that as reassuring for the woman to know, and if it is endometriosis then it makes sense to treat it early on."
*Not her real name