Disease of a modern woman: There's no need to suffer

By admin
29 May 2009

It’s frequently overlooked by doctors. It can be incredibly painful, sometimes disrupts your menstruation and is one of the leading causes of infertility in women. Endometriosis is on the rise in South Africa and around one in 10 women will suffer from it during her fertile years. But it can be treated

By Marie Opperman and the Health24 team

“I just can’t take it anymore.” Dani* (23) is as thin as a rake and has dark shadows under her eyes. Her story makes you shudder.

“I was only 15 when my doctor told me I had lesions caused by endometriosis on my bladder, intestines, ovaries and uterus.

“I know it sounds ridiculous but I was using about 60 tampons a week – that’s about 240 a month and 2 880 a year. It’s so bad now I’ve been bleeding continuously for the past year. I’ve menstruated for 365 consecutive days.

“I’m amazed I still have the strength to get out of bed. I’m in pain all the time – sometimes it’s so bad I’m on the verge of fainting.”

She has little energy and her weight is dropping: last year she weighed 54 kg – now she weighs 10 kg less. Her hair falls out by the handful and she’s been told she needs blood transfusions and will possibly have to have a hysterectomy too.

“What if I can’t have children? I don’t know what to do. I’m emotionally exhausted,” she says.

Layla* (28), an artist who lives in Port Elizabeth, knows just how Dani feels. “As a young girl I knew periods were part of being a woman. And that they could be painful. We were told to accept the cramps, pain and bloating by grabbing a hot water bottle and a handful of painkillers and staying in bed.”

But for Layla “being a woman” became a living hell. “Eventually after who knows how many years I was diagnosed with endometriosis. It was an enormous relief to give a name to the monster that had debilitated my body month after month.

“At least I could stop feeling like a hypochondriac with an overactive imagination and a below-average pain threshold,” she says, her eyes filling with tears.

Endometriosis is on the increase in South Africa. Today it is one of the most common gynaecological problems, affecting about one in every 10 fertile women.

Dr Johan van Schouwenburg, an expert in reproductive medicine at the Medfem Clinic in Sandton, even calls the condition “the disease of the modern woman”.

“It occurs mostly among perfectionists and professional women whose jobs and lifestyles are accompanied by sustained, low-grade stress,” he says. But professional women aren’t the only ones who suffer from it, cautions Dr Johan van der Wat, who specialises in reproductive medicine at Johannesburg’s Park Lane Clinic. According to him the problem is far more common.

“I’m seeing it in a range of patients, including those who don’t lead a stressful life. But it’s frequently misdiagnosed and as a result many women suffer unnecessarily.”

The cause remains a mystery and many women suffer in silence because they feel their pain – especially during intercourse – is too personal to discuss with their doctors.

According to Dr Van der Wat, who is also an editorial advisor for Endozone (www.endometriosiszone.org), a website about the condition, there’s no reason why women have to live with the pain and bleeding.

“It can be treated. Medical aids pay for the treatment, whether it’s surgical or medical.”

Endometriosis is a painful, chronic condition that occurs in the endometrium, the mucous membrane that lines the uterus. It can also occur outside the uterus – in fact anywhere in the abdomen, including inside the ovaries and Fallopian tubes, on the ligaments that support the uterus and deep behind the womb.

Sometimes lesions form on the bladder and intestines or in old scars from a Caesarean section or where a laparoscopy had been performed. In rare cases endometriosis can occur elsewhere in the body – there have even been cases of lesions developing in the lungs, brain and nose. These are, however, the exceptions rather than the rule.

Wherever endometrial cells grow they behave as if in the uterus. During a woman’s period the cells multiply in preparation for an embryo and are then shed during menstruation. But while menstrual blood leaves the uterus through the vagina, endometrial blood and tissue have no way out and accumulate in lesions. This leads to inflammation in surrounding tissue.

Endometriosis often causes growths in the abdomen that can completely disrupt a woman’s internal anatomy. In serious cases organs can even start growing together, a condition called a “frozen pelvis”.

The intense inflammation of the lesions, along with the growths that pinch tissue and pull at organs, often leads to unbearable pain during menstruation. Sometimes that pain can last throughout the month. It often radiates to the groin, back and thighs and is sometimes so intense that it seriously disrupts a woman’s life and her relationships.

“It feels like a pair of pliers is gripping my uterus,” says Amy*, another sufferer. “Everything centres around the pain and it’s difficult to focus on anything else.”

Pain during and after intercourse is another common symptom. Diarrhoea, constipation, bloating and blood in the urine also frequently occur. Many women, like Dani (although her case is extreme), experience abnormal and irregular vaginal bleeding.

But not all endometriosis sufferers have equally extreme symptoms. Some women experience barely any pain at all despite having serious lesions, while others who have relatively few lesions have a really tough time of it. Some find out they have the condition only when they can’t fall pregnant.

“Endometriosis is one of the biggest causes of infertility we see at the clinic,” Dr Van Schouwenburg says.

He explains: “Fibrin, a kind of ‘glue’ that forms naturally in the blood, ‘sticks’ the Fallopian tubes to the pelvis. This prevents the tubes from picking up the egg and causes infertility. “The old, accumulated blood breaks down and releases toxins. This leads to spasms in the intestines or Fallopian tubes, which also disrupts their functioning and hampers pregnancy.”

In addition, the toxins weaken the quality of the uterine mucous membrane to which the egg must adhere in order to develop. If the egg can’t attach it can’t grow and so the woman can’t fall pregnant.

“Endometriosis occurs in between 60 and 70 per cent of all infertile patients we see at the clinic – usually among women in their 20s and 30s,” Dr Van Schouwenburg says.

* Not their real names.

Causes

Endometriosis is an enigma. There’s no certainty as to why it develops. It’s generally accepted that it is brought on when menstrual blood – containing bits of uterine lining – is “pushed” back through the Fallopian tubes into the pelvic cavity during menstruation.

Research has shown sufferers’ immune systems are affected so it’s likely they develop the condition because they don’t produce the antibodies needed to stop the abnormal growth of the endometrium.

Endometrioses has even been blamed on the use of tampons. Most are made of bleached paper and consist of wood pulp and chlorine. This contains the toxic chemical dioxin, which can hamper physiological processes because it poisons the body.

“But there is no evidence tampons cause endometriosis,” says Dr Merwyn Jacobson, a reproductive specialist at the Vitalab Clinic in Morningside, Sandton.

Tampons that do not contain dioxin, such as those made of pure cotton or organic material, can be bought at health shops.

Symptoms

Pain is a striking symptom of endometriosis. “If pain lasts longer than a day during menstruation you should be checked for endometriosis,” specialist Dr Johan van Schouwenburg says.

Pain during and after sex is another common symptom. It’s a deep-seated stabbing pain that sometimes lasts up to two days and occurs especially when you have lesions in the deep hollow behind the uterus and the vagina.

Sufferers sometimes experience abnormal and irregular vaginal bleeding.

Intestinal irritation is another symptom. This includes a swollen abdomen – often wrongly diagnosed as a spastic colon – and constipation or diarrhoea during your period and at other times.

When lesions are present in the bladder or intestines they can cause bloody urine or stools, which can be accompanied by discomfort during urination and sharp rectal pain.

The risk of getting endometriosis increases throughout a woman’s reproductive years. After menopause when menstruation ceases the risk drops dramatically. Symptoms also often improve during pregnancy and breast-feeding.

Diagnosis

When a doctor suspects endometriosis the first thing he does is an internal examination. “If the patient has the condition she’ll experience pain when the cervix or uterine ligaments are manipulated,” Dr Van Schouwenburg says.

“After that, an internal sonar is done to determine if there are lesions on the ovaries.”

A laparoscopy is used to make the final diagnosis. A small incision is made in the navel and a tiny camera on a thin rod is inserted into the abdomen so the doctor can look for any lesions.

“If endometriosis is present the lesions are usually removed immediately,” he says. One or two small incisions are made low in the abdomen in the pubic hairline. The surgeon inserts forceps and scissors and removes the tissue in accordance with images sent from the camera to a TV screen. The tissue can also be carefully burnt away with a laser. The incisions are so small only one stitch is needed to close each wound.

Deep lesions require the skills of a gynaecological surgeon with comprehensive experience in endometriosis treatment as delicate work has to be done to prevent more growths and scars.

Pregnancy

There are four degrees of endometriosis.

Grade one and two are light. There’s usually a good chance you can fall pregnant within about six months of having surgery. After pregnancy the condition usually clears up by itself.

In grade three and four cases there’s only a 50 per cent chance you can fall pregnant but your best chance of this happening is also within six months of the operation.

After that your chances of pregnancy drop drastically. “If you can’t conceive naturally, in vitro fertilisation is recommended,” specialist Dr Johan van Schouwenburg says. If you don’t want to fall pregnant immediately you will probably have to have another laparoscopy in order to remove any regrown endometrial tissue.

In serious cases surgery is effective for only 12 to 18 months after which the tissue grows back. If you want a baby you should conceive as soon as possible after a laparoscopy, before endometrial tissue regrows.

Unfortunately every operation does a little bit of damage and leaves scars on the parts from which the tissue has been removed such as the bladder or abdomen, so doctors don’t like operatingtoo often.

Other treatments

Surgical removal of lesions remains the best treatment. For symptomatic relief painkillers containing an anti-inflammatory can be taken.

Mirena, a vaginal contraceptive (IUD) that secretes progesterone, can also bring relief and it sometimes helps to use a contraceptive pill or the contraceptive injection Depo-Provera.

In serious cases endometriosis can be treated either with variants of the male sex hormone testosterone or with Zoladex, which induces temporary menopause in a matter of days. Both shrink the endometriosis lesions but have negative side effects.

“Among other things, the male hormone causes weight gain, acne, a lower voice and hair loss,” Dr Van Schouwenburg says. “For the duration Zoladex is used it causes early temporary menopause along with bone decalcification and osteoporosis. For this reason it’s prescribed for only three to six months.

“A hysterectomy doesn’t always help as endometriosis develops outside the uterus. The uterus is only removed in serious cases.”

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