Local

Women suffer with painful disease

3 June 2005

A disease long dismissed as little more than severe menstrual cramps continues to go undiagnosed in millions of women.

Endometriosis, a hormonal and immune disease with no known cure that causes pain and heavy bleeding, is known to affect almost 80 million women and teenagers worldwide, according to the Endometriosis Research Centre in Florida.

This disease is named for the endometrium, the tissue that lines the inside of the uterus. In endometriosis, this tissue appears outside the uterus where it can form growths that usually respond to the woman’s menstrual cycle – building up, breaking down and bleeding – which can cause varying degrees of pain.

The medical community has known about this disease since the 1920s, but many women can still suffer for years without a proper diagnosis.

Gynaecologist Barry Richter has treated women with endometriosis for five years at his clinic here and seen hundreds of cases during the previous nine years he was practicing in Canada and the US.

- Advertisement -

He described the usual symptoms of this disease.

‘There are three kinds of presentations: pelvic pain and painful intercourse, painful periods and infertility,’ Dr. Richter explained.

But, for various reasons, women may not receive timely treatment, he added.

‘Sometimes not enough attention is paid to the symptoms by doctors. But, on the other hand, the disease can develop slowly and with mild symptoms.

‘It can progressively get worse. The woman may not want to complain about it at first, until it gets to the point where she can’t handle the pain,’ Dr. Richter said.

At that point, he explained, the pain could be severe enough to affect someone’s functioning where they can’t work or interact socially.

‘The disease can be very debilitating. They may be taking so much pain medication and still not be able to function,’ he said.

Diagnosing the disease

The most definitive way to diagnose the disease is through laparoscopy, a minimally invasive surgical procedure performed under anaesthesia, in which an instrument with a camera on top is inserted through a 1cm incision in the belly button

The doctor moves the laparoscope around the abdomen to check on the organs and look for endometrial implants.

During the procedure the doctor will take a sample for testing and/or remove the obviously affected tissue. This part of the procedure is performed through one or two other .5 cm incisions.

Dr. Richter performed hundreds of laparoscopies a year, for various medical reasons, during his time in North America, where he trained with experts in this field.

In Cayman, he performs 60 to 80 laparoscopies annually, many of these procedures specifically for endometriosis.

Dr. Howard Deosaran is also familiar with the procedure, having performed more than 1,000 laparoscopies. In his three years here he has done what he calls a significant amount of these procedures.

Even when the disease is confirmed, however, the treatment is far from straightforward. There is no cure for endometriosis, leaving sufferers to undergo a variety of therapies in search of one that will offer the most relief.

‘Generally, endometriosis represents a significant health problem for women of reproductive age,’ Dr. Deosaran said, adding that it affects from seven to 10 per cent of the general population and up to 50 per cent of pre-menopausal women.

Four levels

The disease is described as having four levels, ranging from stage one, which is considered minimal to stage four, the most severe form.

The stages are not proportional for the symptoms, however, he explained.

‘A woman with Stage 1 endometriosis may have tremendous pain and in Stage 3, this may be minimal,’ he said, adding that of those with the disease, 71 to 87 per cent may suffer from chronic pelvic pain.

Painkillers are usually prescribed to help alleviate one of the disease’s most debilitating symptoms.

Dr. Richter begins treatment by prescribing anti-inflammatory medication and birth control pills.

Hormonal treatments aim to decrease the development of the lining of the womb by decreasing the oestrogen production in the ovaries. These treatments include oral contraceptives, progesterone drugs, a testosterone derivative and GnRH (gonadotropin-releasing hormone) drugs.

Some women may suffer with side effects from these drugs, however. With GnRH drugs, for example, there is an increased risk of osteoporosis, Dr. Richter said.

GnRH treatments can cause complications if continued for more than six months. This course of medication should also only be prescribed once.

Dr. Deosaran described the risks. The drug blocks oestrogen formation which in turn decreases the endometriosis, he explained.

‘It is a good short-term treatment but there are complications or risks to patients if they take it for more than six months, such as temporary early menopause and osteoporosis,’ Dr. Deosaran said

Surgical treatment

Both doctors believe surgical treatment offers better results than medications.

‘With medical treatment, the disease will recur in 18 months, if we’re lucky, otherwise it could be sooner,’ Dr. Richter said.

‘The absolute best treatment is to excise the growth using laparoscopic scissors. The disease can still reoccur but the chances are much less, especially if you are thorough in removing it,’ he added.

The recurrence rate appears to correlate with the severity of the disease, Dr. Deosaran explained.

If patients suffering from a mild form of endometriosis are under medical management after surgery, the disease will recur in 37 per cent of these women after seven years. If the case is severe, the recurrence rate after seven years rises up to 74 per cent, Dr. Deosaran said.

As part of the surgical option, the doctor can remove that part of the abdominal lining, or peritoneum, which lines the pelvis. After removing the affected lining, he sprays an adhesion-barrier gel to prevent any further adhesions forming. The lining will grow back over several months and the lack of pain after that time will indicate success for the patient, Dr. Deosaran said.

He describes the removal of the peritoneum as one of the new forms of management for this disease. ‘If we remove the lining, the patients seem to have better results,’ Dr. Deosaran said.

Laparoscopy, which leaves a .5cm to 1cm scar, affords fast recovery, with patients spending up to one day in the hospital and usually able to return to work in a week. The adhesions are removed through heat (cauterisation) or cutting, since the laser option is not available in Cayman.

‘Laparoscopy has opened up a new window for treatment and diagnosis of endometriosis,’ Dr. Deosaran said.

Every patient different

The doctor stressed that every patient is different and it is important to consider each woman’s history and symptoms.

‘Using a combination of medical and surgical treatments according to each individual patient, may provide the best results,’ he said.

Two to three weeks after the procedure, Dr. Deosaran will see the patient again to discuss the surgery. ‘We will also go over medical treatment options to enhance remission of the disease following surgery,’ he said.

The doctor emphasised the importance of monitoring progress. ‘Regular follow-ups are paramount for patients with this disease,’ he said.

Two years after the surgery, he will do a second-look laparoscopy to ensure the endometriosis has not recurred.

Despite all the options for diagnosis and treatment of endometriosis, the cause of this disease remains a mystery.

Several theories have circulated, however. One suggests the cause is retrograde menstruation, where the menstrual tissue backs up through the fallopian tubes and gets implanted in the abdomen, where it grows.

Another possibility is that endometrial tissue from the uterus is spread through the blood or the lymph system.

Genetics may also play a part, with certain families more likely to get the disease.

It has also been suggested that remnants of tissue from when a woman was an embryo may later develop into endometriosis.