‘Girls should be taught all about endometriosis in school so they know that it can affect their fertility...’
It took 20 years for Audrey Byran to get a diagnosis for the painful condition. Now she wants to raise awareness so others don’t suffer the same fate.
Published 12/08/2014 | 00:00
Audrey was in her late teens when the crippling pain began. It would come with her period and last for a full week each month.
Along with the pain, Audrey would experience extreme fatigue, nausea, bloating, and both diarrhoea and constipation. By the time she reached her early thirties, she was experiencing “sharp, shooting, stabbing pains” in her abdomen, pelvis and rectum on a daily basis. The pain severely affected her social life — and her intimate private life. But despite having such frequent and extreme symptoms, Audrey’s condition wasn’t diagnosed until April 2013 — 20 years after the symptoms began.
Audrey was diagnosed with endometriosis, an extremely painful condition that can cause infertility. It’s as common as asthma or diabetes, affecting one in 10 women of reproductive age, yet it’s a condition that’s not widely known about.
It’s also a condition that medical practitioners seem to have great difficulty in detecting and many women, like Audrey, suffer for years before being diagnosed.
“At the outset, I would have been in debilitating pain mainly one week out of every month, usually coinciding with menstruation,” says Audrey.
“In those early days, I would also experience cramps, bloating, nausea and other IBS type symptoms on an almost daily basis.
“This worsened over time. By the time I reached my early thirties, I had started to experience very unpredictable sharp, shooting, stabbing pains in my abdomen, pelvis and rectum. I would experience pain most days, which would get worse closer to my period. Sometimes, when I’d have my period, I would feel like an animal bleeding to death — very slowly. And I would hope and pray that someone would come along and put me out of my misery.”
The symptoms of endometriosis can be incredibly varied, but painful menstruation, pelvic pain, painful intercourse and infertility are the “classic” symptoms, according to the Endometriosis Association of Ireland.
Women may also experience cyclical symptoms — symptoms that develop a few days before menstruation and disappear a few days after — such as bloating, constipation, diarrhoea, painful bowel movements, rectal bleeding, painful urination, blood in the urine, and shoulder pain. And the severity of these symptoms varies from woman to woman, depending on where the endometriosis is in the body.
With the condition, cells from the lining of the uterus appear elsewhere in the body. And though these cells are no longer in the uterus, they still behave as though they are: growing and thickening and bleeding each month. And because the cells become attached to other organs, such as the ovaries, the bowel and the bladder, this process causes considerable pain, swelling and complications.
How the cells leave the uterus is a mystery. It’s thought that, instead of leaving the body during menstruation, some of the uterus lining moves up through the fallopian tubes and into the abdomen. This is known as retrograde menstruation. It’s the most commonly accepted theory, but it doesn’t explain why only 10 per cent of the women who experience retrograde menstruation develop endometriosis.
What causes the condition is another mystery. There’s some evidence that it’s hereditary; some evidence that environmental toxins may be to blame; and some evidence that the age at which a girl has her first period is to blame.
Others have looked at the link between endometriosis and obesity — and made some very conflicting and surprising discoveries.
An Australian study found that being obese at 10 years of age doubled a woman’s risk of having endometriosis.
However, a European study found that morbidly obese women were at least risk of endometriosis. A woman who had been classed as morbidly obese at age 18 was found to be 41pc less likely to develop the condition than a woman with a low BMI.
But, regardless of who gets it, or how, endometriosis affects a woman’s life, and how she lives it, in many ways.
“Fatigue was one of the first symptoms I experienced when I first became aware that something was wrong with me,” says Audrey.
“When you have a chronic condition with fatigue you have to adjust to the reality that you only have so much energy to get you through the day.
“On a practical level, things like travelling, working, having to be away from home for any length of time, and attending social events were challenging. I would often feel dizzy with the condition and sometimes it made it difficult to have a conversation with someone.
“I no longer drink alcohol — because it exacerbates my symptoms; and in a culture that revolves around drinking, it can be hard to feel that you belong.”
For many women, it’s the effect on their fertility that provides the biggest challenge. But it was an aspect of the condition that Audrey had been unaware of for most of the years she suffered with the condition.
“When I was first diagnosed, the doctors kept referring to my age and how much of a problem this was going to be if I wanted to have a baby,” says Audrey.
“I found this very upsetting because no doctor or gynaecologist I had seen over the years had mentioned the possibility that I might have endometriosis — that I had a condition that affects fertility.
“It’s very possible that I will never be able to get pregnant or carry a baby to term. This is something I have had to make peace with.”
Audrey had to endure her pain for more than 20 years before her endometriosis was diagnosed. This is exceptional, but far from unique. A study of endometriosis across 10 countries found that, from the onset of symptoms, most women would have to endure those symptoms for an average of 6 to 7 years before being properly diagnosed. The same study found that most women had consulted their GP about 7 times before getting a referral to a specialist.
Why does it take so long to get an accurate diagnosis?
“The symptoms of endometriosis are not very specific,” says Kathleen King, chairperson of the Endometriosis Association of Ireland.
“A diagnosis of endometriosis cannot be made on symptoms alone. The only way to diagnose endometriosis is via a laparoscopy, an invasive surgical procedure carried out under a general anaesthetic.
“Additionally, women are not aware that endometriosis exists, or that severe menstrual and pelvic pain is abnormal.”
Because the symptoms are not very specific and are similar to those of other more common conditions that women are often treated for — appendicitis, ovarian cysts, diverticulitis, fibroids and a whole host of other ailments.
“I received a diagnosis of irritable bowel syndrome (IBS) when I was 21,” says Audrey. “I feel that this was a major obstacle to me obtaining an accurate diagnosis of endometriosis, because I now know that what I was experiencing was endometriosis of the bowel. The IBS diagnosis meant that doctors were quick to attribute my symptoms to IBS and not so quick to explore other possibilities.”
Audrey was finally diagnosed with endometriosis when she was 39. After an ultrasound scan had revealed ovarian cysts, a follow-up laparoscopy detected endometriosis.
She had surgery. But a few months later it became apparent that it had been unsuccessful. The pain and all of the other symptoms returned. And the surgeon was suggesting that Audrey should just learn to live with it.
“Having waited so long for an answer, and finding out that there was a disease with a name that was responsible for the pain I had felt for so long, I was now being told there was nothing that could be done to help me and that I just needed to suck it up.”
Audrey didn’t suck it up. She got to work researching the condition: treatments, surgical techniques, specialists — everything.
“About a year later, I finally found a gynaecological surgeon who was skilled in excision, who took the time to listen to me, and to explain things to me about my condition.
“Two months ago, I had surgery to remove the endometriosis and scar tissue that had formed throughout my pelvis. After the surgery I noticed an almost immediate improvement in my symptoms.”
Endometriosis is a chronic condition and there is no cure; many women have to accept that their symptoms may only improve for a while. Audrey is very aware of this.
“Because I have the most advanced form of the condition, and it’s a very aggressive disease, there are no guarantees that it won’t return. But so far things are looking positive for me. My quality of life is already dramatically enhanced.”
Because endometriosis has had such an impact on her life, Audrey is keen to alert other women to the condition.
“It’s absolutely vital that young women are informed about endometriosis in school, so that they can learn about its impact on fertility and to recognise that, while some discomfort with menstruation is to be expected, ‘killer cramps’ that disrupt or impede your ability to attend school, or work, or other activities, are not at all normal, and indicate that something is very wrong.”
According to the Endometriosis Association of Ireland, there are many things that need to change in the treatment of endometriosis, such as training gynaecological surgeons in the techniques that have the best chance of success with this condition. But earlier detection is crucial.
“Endometriosis can have such an impact on people’s lives, but with early diagnosis and appropriate treatment tailored to the individual it need not be so,” says Bebhinn NicLiam of the Endometriosis Association of Ireland.
“It’s important that young girls and women who now present with endometriosis symptoms be investigated further and treated in a timely and appropriate fashion, so that the disease does not impact on their ability to continue with their education or career, to fulfil their wish to have children, to be able to live their lives as completely as possible.”