Ask a group of women what they know about endometriosis and chances are most will be clueless.
Yet endometriosis affects millions of women – an estimated one in 10 – in the prime of their lives, causing chronic pain, damage to pelvic organs, exhaustion and, sometimes, fertility problems.
In many cases, it can take eight to 10 years to be accurately diagnosed, and because the condition is linked to the menstrual cycle, many sufferers believe that pain is something they just have to endure.
Pauline Sangham, a producer and presenter of the Life and Style morning show on Lotus FM, knows first-hand how it can blight lives – and she wants to raise awareness of it.
“I did not know it was a long-term condition. I thought it was something that could be sorted out by an operation,” she says. “Sadly, I was mistaken.
“I lived with pain. It affected my work, caused me to lose my husband – and it earned me the title ‘Monster Mom/Wife’ from my family, as I was always irritable, in pain and would snap at everyone.”
Pauline, 42, and a mother of two teenagers, said she started experiencing pelvic pain, irritability and fatigue at the age of 36. At 37 she tried to fall pregnant again, but because endometriosis was causing obstructions in her uterus this became impossible.
“I never thought it was a serious gynaecological problem. I was constantly sore, irritable, had lower back pain and pain with intimacy.”
Heavy periods, pelvic pain and painful intercourse are common with endometriosis. Some women also experience pain when having a bowel movement when they are menstruating. Some have no symptoms and are diagnosed only when they seek help for infertility. The pain caused by endometriosis can be physically and mentally exhausting and can impact on a woman’s life – usually when she is in her prime.
“It affected my productivity,” says Pauline. “I was always sick and I had to take time off work and be hospitalised for laprascopic procedures. Eventually, I had to have a hysterectomy in the hopes that I would be pain-free – to no avail.”
Finally, endometriosis was diagnosed and Pauline underwent surgical procedures to remove lesions from her abdomen.
Endometriosis occurs when tissue that resembles the lining of the uterus is found elsewhere in the body, such as the ovaries and other organs in the pelvis. Once outside the uterus it reacts to changing levels of hormones in the body and starts to grow and slough off, causing inflammation, adhesions, organ and nerve damage.
In Pauline’s case, the lesions were on her uterus and ovaries and she had several operations to remove them.
There is no permanent cure for the condition.
The aims of treatment are to relieve pain, slow growth of endometriosis, improve fertility (if a woman wants to have a child) and prevent it coming back after a successful treatment.
The most successful treatment is a laparoscopy which is used to diagnose (through actually seeing where the lesions are) and treat (by removing the lesions and scar tissue) endometriosis. But, because the endometriosis grows under the influence of hormones, it will recur over time. Treatments include painkillers and hormonal therapies like the contraceptive injection or oral contraceptives. Some women have success with nutritional and complementary therapies.
Pauline believes the condition is aggravated by stress.
“Stress definitely made it worse and I have had to learn to manage that too. Now, I go to gym three times a week, I read to relax and live a healthy lifestyle. I have been well for a while but I still experience pain.
“My advice to women is: don’t just put up with pain. See your doctor and if you are not satisfied, seek a second or a third opinion. Endometriosis can be treated and managed better if it is caught early. Mine was advanced and perhaps if I had known more about it and started treatment earlier, there would have been a better outcome.”