HEALTH BLOODY HELL:
Endometriosis is estimated to affect 200 million women globally, causing debilitating pain and disrupting careers and relationships – yet with early detection and treatment it can be managed.
One in 10 women has endometriosis – do you?
who’d have thought bubbly Cyndi Lauper, who convinced a generation that ‘girls just wanna have fu-un’, alternated making her albums with hospital stays for excruciating pain? Or that when Susan Sarandon fainted in The Rocky Horror Picture Show, she was also fainting and bleeding off set?
Yet these and a slew of other celebs – Lena Dunham, Padma Lakshmi and Whoopi Goldberg, – are among the estimated one in 10 women with endometriosis. For all this, it’s a widely misunderstood condition. And even with several support and advocacy groups being established (Lakshmi’s Endometriosis Foundation of America; Joburg sufferer Lynne Zurnamer’s Endometriosis Society SA), diagnosis is often a long time coming, causing women to lose precious years in their prime, and costing them in careers, finances, relationships, social life, family life and self-perception.
It takes, on average, seven years and seven primary care visits before a specialist referral brings an accurate diagnosis, says Zurnamer. And women who complain about discomfort are often ignored, or labelled hypochondriacs. ‘There’s still an attitude that severe period pain and endometriosis is just something you put up with. That’s not true! What’s needed is a proper understanding of the condition.’
‘Many women live their whole life without symptoms; it’s only a coincidental finding during surgery for another condition,’ says Dr Elize Wethmar, a Benoni-based gynaecological oncologist – and fellow sufferer. ‘The grade of endometriosis is not necessarily linked with the amount of pain experienced. You must seek treatment – don’t become a slave to the disease. Whether you’re going to be a victim of endometriosis or conquer it, is your decision.’ WHAT IT IS
When you have endometriosis, cells that form the lining of your uterus grow elsewhere, especially in the pelvic cavity, creating endometrium-type tissue there. This can form lesions, nodules or cysts (‘endometriomas’) that produce a chronic inflammatory reaction, causing pain, fatigue, nausea and vomiting. Depending on where they are, there may also be bladder and gastrointestinal problems such as constipation, as scar tissue forms along with adhesions – fibrous bands of sticky tissue that can fuse membranes or organs together and cause blockages, in extreme conditions. This can cause infertility; after treatment, assisted reproductive techniques are often needed in order to conceive, Dr Wethmar says.
The reason all this happens remains stubbornly unknown. ‘It seems the endometrial tissue reacts to changing levels of hormones during your menstrual cycle,
which causes it to grow,’ says Zurnamer. One theory is that during menstruation blood breaks through the fallopian tubes, carrying the endometrial cells elsewhere, where they develop. Another is that primitive cells in the linings of organs in the pelvis develop into other kinds of tissue, including endometrial cells. Some studies also suggest that certain women may have immune response problems that prevent their bodies from recognising and destroying the unnatural growth of endometrial tissue.
DIAGNOSING IT
Extreme pain is a prime indicator. ‘Normal period pain starts two or three days before your period and subsides once bleeding starts or you take painkillers,’ says Zurnamer. ‘It’s not normal to have pain all day, every day, even when not menstruating. Or to have pain so bad you can’t function, and you vomit and pass out. And this can happen with endometriosis.’
Most patients with chronic period pain have primary dysmenorrhea – meaning no cause is found, says Dr Wethmar. ‘Only 20 percent of chronic pelvic pain is caused by gynaecological conditions, including endometriosis, uterine fibroids, adenomyosis, pelvic inflammatory disease and pelvic adhesive disease.’
Other risk factors for endometriosis are a family history of the disease; early onset menstruation (before age 11); irregular or heavy periods or spotting; blood in your urine or stools; and pain just before, during, or after sex. Apart from pelvic pain, signs may include lower back and leg pain, and pain when you urinate or pass stools. ‘In severe cases, endometriosis can grow in the stomach, causing the vomiting of blood; or in the lungs, causing the coughing up of blood,’ says Dr Wethmar. ‘It can grow in a Caesarian section scar, or in the belly button after laparoscopic surgery – it has a mind of its own.’
The problem in diagnosing endometriosis is that many of the symptoms may signal other conditions, such as pelvic inflammatory disease and irritable bowel syndrome. And up to a third of women have no symptoms at all. ‘Endometriosis can creep up, and the first some women know of it is when they fail to get pregnant and go for fertility treatment,’ says Zurnamer. Some 30 to 50 percent of women with endometriosis suffer infertility, according to the journal Obstetrics and Gynecology Clinics of North America.
Endometriomas can been seen on ultrasound, and recto-vaginal nodules can be palpated during clinical examination, says Dr Wethmar. But the only conclusive diagnosis is by examining internal organs in a laparoscopy, and taking tissue samples for analysis.
HOW TO TREAT IT
There is no cure for endometriosis – but treatment can improve women’s quality of life. It focuses on management to relieve pain, slowing the growth of endometrial tissue and, for those hoping to have a family, improving the chances of fertility. ‘Patients with endometriosis can lead normal lives – with the correct management,’ says Dr Wethmar.
Today, options range from pain relievers such as nonsteroidal antiinflammatory drugs (NSAIDs) to hormonal medications, including birth control pills, progestin-only medications and gonadotropinreleasing hormone (GNRH) analogues, if you’re not trying to get pregnant. However, addback oestrogen therapy is needed if GNRH analogues are used, otherwise young women could suffer severe menopausal side-effects.
‘Hormonal medications can help slow the growth of endometrial tissue and may keep new adhesions from forming,’ says Zurnamer. There’s currently some controversy with regard to the use of COCs (combined oral contraceptives, oestrogen-progestogen), since the oestrogen component can aid in the growth of endometrial tissue. However, it does help control period pain, so it’s often still used, says Dr Wethmar. ‘Patients are often advised to use the active pills only in order to skip menstrual periods, reducing pain but also in an attempt to avoid retrograde menstruation in case this theory for the cause of endometriosis is correct. But these drugs don’t get rid of endometrial tissue that’s already there.’
Dienogest, an oral progestin, is the first medication specifically for avoiding infertility, and the only long-term treatment approved so far by the Medicines Control Council. ‘It also helps control pelvic pain,’ says Dr Wethmar. ‘In a large percentage of patients it will cause amenorrhea, but in some it can cause debilitating spot bleeding. It’s often prescribed post-surgery, as a maintenance medication. However, note that
Dienogest is not a contraceptive.’
If medical treatment doesn’t help endometriosis, in some cases implanted tissue may be removed surgically to relieve pain and improve fertility, usually during the diagnostic laparoscopy performed to determine the severity of the condition. ‘In early stages the endometriotic tissue can be removed, but in advanced stages careful surgical planning is needed,’ Dr Wethmar says.
Surgery isn’t always possible or successful, however – much depends on where the tissue is, and the experience of the surgeon. ‘Endometriosis needs a surgeon with sufficient skill, and deep infiltrative endometriosis needs to be operated on at a centre dedicated to the management of this condition,’ says Dr Wethmar.
‘Excision surgery doesn’t cure endometriosis, but it’s often used to treat it – perhaps overused,’ says Zurnamer. ‘There are women who have been subjected to four to 12 surgeries over two to five years. Many are led to believe surgery will be a cure and they’re left disappointed.’ ‘The more one operates, the more adhesions can form,’ adds Dr Wethmar. ‘And continually operating on young ovaries depletes ovarian reserve, so careful timing and planning of surgery is essential.’
Even removing your uterus or ovaries won’t treat or cure endometriosis, Dr Wethmar says, though some desperate women go that route – including Lena Dunham, who had a hysterectomy last year at age 31, after eight surgeries and other treatments, as she wrote in a moving essay for Vogue (do google it).
‘In a young women, reproductive preservation is paramount, so the ovaries are spared whenever possible,’ says Dr Wethmar. ‘A hysterectomy is usually performed after childbearing is completed, to control bleeding if all other methods fail. In some cases, preferably in older women, an oophorectomy (the surgical removal of one or both ovaries) can be considered since endometriosis, especially endometriomas in the ovary, can lead to endometrioid carcinoma of the ovary or type 2 serious carcinoma. It’s a diagnosis mostly made post-operatively, limiting the removal of as much of the growth as possible during primary intervention. Endometriomas in postmenopausal women can hide a more sinister condition. If you’re premenopausal and have had bilateral oophorectomies, consider HRT with both oestrogen and progesterone to try to prevent the regrowth of endometrial tissue.’
Endometriosis can lead to malignancy, so not even menopause is a sure end to the condition. The bottom line is that it’s a chronic, relapsing disorder, and doctors need to develop an individualised long-term plan of management, considering the patient’s age, reproductive wishes and painmanagement goals.