The pain of endometriosis can occur during sex, around the period or throughout the cycle. Even after treatment, it is one of the commonest causes of infertility. We consider the treatments.
Endometriosis is an extremely common condition, often overlooked by doctor and patient alike, and is the best known example of a common medical condition in which normal tissues are found in abnormal sites. In this case, it is where the lining of the womb, the endometrium, is found anywhere other than the womb cavity.
The most common site of all for endometriosis is on or around the ovaries, usually both at once, but it is frequently found at other sites, often including the outer walls of the uterus or vagina. Now and again it is also found on organs such as the bowel or inside the bladder, where it can cause monthly bleeding. There are recorded cases where endometriosis has been found on the arm, leg and even the nose of sufferers.
Endometriosis is sensitive to sex hormones in just the same way as the lining of the womb, and just like the lining of the womb it undergoes cyclical bleeding. This monthly bleeding is the cause of many of the problems associated with endometriosis because, unlike tissue in its normal site, there is no escape route for the menstrual blood. The trapped blood accumulates every month, causing pressure, pain and eventually the destruction of the affected organ.
Many causes have been suggested but none seems to fit all the facts. Most gynaecologists are agreed that deposits of endometriosis in different sites arise in different wavs.
It is probable that deposits of endometriosis in the muscle of the womb arrive there by growing outwards from the lining, though why this should happen is unknown.
This theory doesn’t explain how endometriosis spreads around the abdomen and pelvis. Gynaecologists explain this by what they call ‘cellular spill’. This suggests that during menstruation minute seeds of the womb lining pass back along the Fallopian tubes and out onto the ovaries and beyond. This theory is supported by the observation that some of the lining of the womb is still living, healthy tissue even after it has been shed.
Neither of these theories is an adequate explanation of how endometriosis can be found in places as far away from the womb cavity as the nose. Perhaps this represents tissue that has developed within the body abnormally and only resembles the lining of the womb by chance.
Endometriosis never occurs before puberty or after the menopause, but between these two extremes it may strike at any time. Most women become aware of it for the first time in their twenties or early thirties.
It is more common in Europe and North America and almost unheard of in Africa or the West Indies. Like other hormone-related conditions, it is more likely to be experienced by women who delay pregnancy and by those with smaller families.
The commonest symptom of endometriosis is pain. This may occur throughout the cycle but usually it is during or just before the period. In many cases the amount of pain seems to bear little relationship to the severity of the disease. Some women have excruciating pain from tiny deposits whilst others are pain free despite extensive endometriosis. Some women only experience pain during intercourse, and even then only in certain positions.
In many women the first clue that they have endometriosis is not pain but infertility. It is difficult to see why infertility should be the common problem it is. Tests usually show that everything is fine, but still pregnancy is impossible. In some cases internal bleeding has scarred the ends of the tubes and eggs are unable to reach the Fallopian tubes or even be released. It is likely that, in some cases, the mild endometriosis often seen during laparoscopy is used as a convenient scapegoat for what is often an inexplicable condition.
Forms of treatment
The symptoms of endometriosis regress completely after the menopause and during pregnancy, sometimes for good. This regression forms the basis for many of the most effective treatments.
Many cases of endometriosis go unrecognized. The sufferer just accepts that her periods are more painful than her friends and takes stronger painkillers. Other women know within themselves that something is wrong but cannot convince their doctors.
If, in these cases, simple painkillers or altering positions for sex are sufficient, there is probably no need to take the matter further unless there are fears over fertility.
The only remedy 30 years ago was pregnancy, and this is still a highly effective treatment. Unfortunately, in many cases this is undesirable, and in some cases physically impossible.
For some women, who only have one or two spots of endometriosis, simple surgery is usually enough. Unfortunately this is rarely the case and more extensive therapy is usually found to be required.
Aside from pregnancy, treatment is divided into surgical and hormonal. Except in the case of very extensive disease most gynaecologists would be loathe to perform surgery on younger women without at least trying out hormonal therapy.
The basis of hormonal treatment is the complete suppression of cyclical hormonal changes in the body and thus the abolition of menstruation.
Large doses of progestogens may be given for nine to 12 months to mimic the effects of pregnancy. The symptoms of endometriosis are suppressed throughout the treatment and may not recur, certainly not at once, when the course is stopped. Unfortunately, side-effects including weight gain, breast enlargement and skin changes make this treatment unacceptable to many women.
An alternative is a drug called Danazol, which inhibits the growth of the lining of the womb and, though more expensive than progestogens, is probably more effective. Some women, however, experience severe side-effects including weight gain, a deep voice and increased body hair, which may be permanent.
However effective hormones seem to he, the condition often recurs and only about 50 per cent of patients treated will be able to conceive a child without medical assistance.
If further treatment is needed it must be surgical. A sensitive gynaecologist will tailor the procedure carefully according to the patient’s wishes and her plans for the future. Young women who have hopes for a family may have their pain relieved and their fertility enhanced by simple procedures such as removing endometrial cysts from the ovaries.
More extensive disease can be located using a laparoscope and destroyed by the application of heat. Even if this is done with great care, the results are often disappointing, both from the point of view of pain and fertility. If assisted conception techniques such as IVF are still needed after treatment, the earlier surgery may help in egg harvesting.
Women who no longer wish to become pregnant may prefer the thought of more radical surgery to the uncertainties of prolonged hormone treatment. In these cases the final and definitive ‘cure’ is achieved by removing the womb and all its appendages, including the tubes and ovaries. Removal of the ovaries ensures that any spots of endometriosis left behind will, robbed of their hormonal drive, regress naturally.
The early menopause that this causes, while curing one problem, may cause others in the form of hot flushes and all the other symptoms of lack of oestrogens. Fortunately, the more up-to-date methods of hormone replacement therapy can confer all the benefits of a normal hormone profile without the risk of a flare up of the endometriosis.
Many women, who find that their condition is not too painful, choose to live with the discomfort once they have achieved a diagnosis. Unwilling to suffer hormone-induced indignities and distrustful of surgery, it seems easier to live with this disease than it is to live happily without it. For those who don’t have this choice, however, it’s a long time to wait between puberty and menopause.