ENDOMETRIOSIS - a patient's guide
- Endometriosis is when the lining of the uterus grows outside the uterus
- Endometriosis can be found on the ovaries, fallopian tubes, bladder and bowel
- Up to one in five women experience endometriosis
- It mainly causes problems for women in their 30s or 40s
- Symptoms include pain, infertility and abnormal bleeding
- Treatment involves surgery to remove the endometriosis and drug therapy
- The disease can return in one in five women, even after surgery
What is it?
Despite being one of the most frequent diseases in gynaecology, endometriosis still holds many enigmas which we do not understand. This condition occurs when the lining cells (endometrium) which are usually inside the uterus, are found to be growing in places outside the uterus - usually on other pelvic organs and tissues.
How common is it?
Up to 1 in 5 women who have periods will experience endometriosis. For some of these women it is the cause of no problems whatsoever and is found coincidentally (e.g. at the time of being sterilised).
Endometriosis is detected more often nowadays because-
(1) Increased awareness in patients and doctors
(2) Gynaecologists recognising subtle signs of minor disease and clearer visualisation using laparoscopes (fine telescopes inserted, under general anaesthesia, through the navel).
Who is affected?
Endometriosis does not occur before puberty and is rare after the menopause. Most often it causes problems for women in their thirties and forties.
Undoubtedly pain is the most common symptom. This can be pain during the period; pain with sexual intercourse; pelvic pain or backache at other times of the menstrual cycle - especially just before the period; and pain with bowel motions during a period.
Endometriosis is detected in 60 - 80% of women with pelvic pain. The mystery is that the amount of pain is not always related to the severity of disease. Some women with widespread endometriosis have no pain, while others with only a few small areas have excruciating pain. Up to a quarter of women with endometriosis do not complain of pain.
Up to 40%of women with infertility will also have endometriosis. The more severe the disease, the more fertility is impaired. However, it is important to note that not all women with endometriosis (especially mild disease) are infertile.
3) Abnormal bleeding
Heavy periods, bleeding between periods and bleeding from the bowel during a period, may be a sign of endometriosis.
With far greater public awareness (through the media, patient support groups, the Internet) and continuing medical education of doctors - patients are being recognised as potential sufferers much sooner and accurate diagnosis and treatment should occur promptly. There are however; disappointing, tragic and frustrating situations of patients who have had delayed diagnoses and suffered longer than necessary.
One vulnerable and complex group are teenagers who have pain from when their periods first begin (primary dysmenorrhea). Traditionally it was thought that endometriosis did not occur in these people, but we now know that a number of teenagers do suffer from the disease. Most teenagers probably do not have endometriosis and their period pains diminish as they get older. The dilemma is knowing how long to wait before suspecting endometriosis and referring them to a gynaecologist. Referral would seem appropriate if painful periods lead to time off school, or interferes with the person's functioning within the family, or they need large doses of pain killers.
Early diagnosis of endometriosis helps women make sense of their suffering and increases our ability to monitor the progress of the disease. Endometriosis can be controlled and treated, but may recur to cause pain and infertility.
If mild endometriosis is found and not treated, then in about half of patients, the disease deteriorates, while in the other half it will improve or disappear.
How does endometriosis occur?
Endometriosis occurs when endometrial tissue which usually only lines the inside of the uterus - is found on other parts of the body, e.g. commonly on the ovaries, fallopian tubes and outer surface of uterus. It can also occur on the bladder and large bowel.
There are two possible explanations - neither have been conclusively proven:
(1) One belief is that endometrial cells are shed backwards from the inside of the uterus into the fallopian tubes and carried back into the pelvis to implant. This theory doesn't completely explain everything as endometriosis can occur in women who are born without a uterus and never have periods.
(2) An alternative theory is that the cells which normally line the pelvis and other possible sites, can undergo a spontaneous change or mutation to endometrial tissue when there are the right hormonal stimuli.
There is a small hereditary influence and endometriosis may be more common in some families with several sisters or mother and daughters affected.
These are mainly:
2) Medical (drugs)
3) Lifestyle changes
There is increasing interest in surgery to remove endometriotic tissue, especially in the earlier or milder forms of disease.
A major modern development has been laparoscopic surgery, whereby disease is removed through several tiny incisions (1.5cm wide) and the pelvis is seen with a thin telescope (laparoscope) inserted through the navel. The benefits of laparoscopic compared to traditional "open" surgery (which involves a larger 10 - 15 cm cut) is that the stay in hospital is shorter, there is less pain and a quicker recovery after the operation. Sometimes with severe disease it is safer and technically necessary to have "open" surgery.
Conservative surgery is aimed at removing only the endometrial implants, scar tissue or adhesions. The female organs are preserved.
Radical surgery is offered to woman who do not wish to have any more children, and who may suffer intolerably heavy or frequent periods. Removal of the uterus (hysterectomy) in these situations is very effective. Sometimes the disease is so severe and the ovaries so involved, that they are removed. This creates a surgical menopause. Oestrogen hormone replacement therapy can be started after ovarian removal, to prevent menopausal symptoms such as hot flushes.
Surgery is able to divide scar tissue and remove deep deposits of endometriosis beneath the surface and is more effective than drug therapy to remove blood filled cysts (endometriomas) in the ovaries.
If however, the endometriosis invades or is adherent to other organs such as bladder, bowel or ureter (the tube carrying urine from the kidney to the bladder), then there are risks of injury to these organs by performing surgery. Identifying and rectifying any such complications is part of the skills required to do this more complex surgery.
Even after surgical excision of all visible endometriosis, in up to 1 in 5 women, further disease can return in future years.
There are hormonal drugs to prevent ovulation and stop all periods and there is no vaginal bleeding. This deprives the endometriotic tissue of sufficient oestrogen hormone and the deposits will shrink.
There are a number of drugs including oral contraceptives, progesterone, gestrinone (a synthetic hormone) and GnRH hormone. They all have some side effects, but most women can find a tolerable drug if they wish medical therapy. Treatment is usually for at least 6 months.
Life style changes
These are important to improve the quality of life, and include:
- Healthy diets and decreased caffeine intake and no smoking
- Exercise that does not cause increased pain
- Stress and pain management techniques (e.g. massage, meditation, support groups, counselling).
Treatment for pain
Both surgery and medical therapy have good short-term relief of pain in up to 80% of patients. In patients with chronic pain however, there is a relapse and recurrence over the years.
Endometriosis can recur and further surgery or drugs or both may be required especially if the ovaries are preserved and ovulation continues.
Treatment for infertility
In infertile couples with no other obvious cause except mild endometriosis, then laparoscopic surgery to destroy mild endometrial deposits will improve the chances of pregnancy.
For severe endometriosis the results are not so clear, but there is probably a benefit from surgery provided the fallopian tubes are normal and there is not extensive scar tissue in the pelvis.
Drug therapies to suppress endometriosis have not been very promising to improve conception following treatment.
In Vitro Fertilisation is now the preferred treatment for women with long standing infertility, increased age (late 30's and over), and severe endometriosis.
Your doctor or gynaecologist will be able to help.
For addition Information and support, New Zealand Endometriosis Foundation Inc, P.O Box 1683, Palmerston North. Phone 06 3292613.