Endometriosis occurs when tissue like that which lines the uterus implants outside the uterine cavity. The endometrial growths respond to menstrual hormones in the same way as the uterine tissue, by building up, breaking down and then shedding. Since the tissue has no means of exiting the body, it develops into painful cysts.
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The symptoms of the disease may vary widely between women, ranging from pain, usually around menstruation, to infertility.
The cause of endometriosis is not known, and it is not preventable.
Although there is no certain cure for endometriosis, medication or surgery can provide relief.
What is endometriosis?
The term endometriosis comes from the word ‘endometrium’ – the tissue that lines the inside of the uterus.
Endometriosis occurs when endometrial tissue implants itself outside of the uterus, in other areas of the body.
Most of these tissue growths (also referred to as nodules, lesions or implants) are found in the ovaries and fallopian tubes. However, they can also occur in or on the intestine, bladder, bowel, vagina, rectum, cervix and vulva.
Although rare, endometriosis can occur outside the abdomen, in the lung, arm, thigh, skin and even the brain. If endometrial tissue appears within the muscle wall of the uterus, the condition is referred to as adenomyosis.
Endometrial growths are generally not cancerous, they are merely growths of normal tissue outside the normal location.
The endometrial tissue growths respond to menstrual cycle hormones in the same way as the uterus lining. Each month the tissue builds up, breaks down and then sheds.
While blood from the uterine cavity lining can leave the body through the cervix and vagina, bleeding from endometrial implants at all ectopic (out-of-place) sites becomes trapped.
This results in internal bleeding, inflammation and the formation of scar tissue and the formation of blood-containing cysts. With each menstruation these cysts expand and cause pain.
The growths can rupture and spread to new areas. If they are on or near the bladder, bowels or intestine, they can interfere with their functions.
Some women remain unaffected by endometriosis, especially in the early stages. Others may suffer severe pain and discomfort. The symptoms seem to worsen with time, although cycles of remission and reoccurrence are the pattern in some cases.
What are the symptoms?
The most common symptom of endometriosis is pain, usually in the lower abdomen and pelvic area. This pain can occur before and during menstruation, during or after sexual intercourse, during urination or bowel movements while menstruating and in the lower back area.
The amount of pain or presence of symptoms is not related to the extent or size of the tissue growths, but rather to the location of the implants and the depth that the endometriosis has penetrated into normal tissue.
Some women show no symptoms, while others suffer from debilitating pain and infertility.
The following are symptoms of endometriosis:
Pain before and during menstruation (dysmenorrhoea): pain can begin a few days before the start of menstruation and is usually the worst during the heaviest flow.
Pain during or after sexual intercourse (dyspareunia)
Painful urination or bowel movements during menstruation
Pelvic pain: this is usually caused by the collection of menstrual blood in the abdominal cavity causing inflammation.
If endometrial tissue implants on the appendix, the pain can appear over the right lower abdomen, similar to appendicitis.
Heavy or irregular periods
Infertility (a common result with progression of the disease)
Miscarriage
Backache during menstruation: this usually occurs when endometrial tissue implants on the intestine
Gastrointestinal upsets such as diarrhoea, cramping, constipation and nausea
Rectal bleeding or blood in stool
Blood in urine
Bloating
Coughing up blood, particularly during menstruation (rare)
Shortness of breath or accumulation of air in the chest (rare)
Leg or hip pain
Fatigue, allergies and other immune system-related problems are also commonly reported complaints.
Because the symptoms of endometriosis are sometimes inconsistent and non-specific, it is possible to have some, all, or none of these symptoms.
What causes endometriosis?
The cause of endometriosis is not known. Various theories have been argued, but no one theory seems to account for all cases.
It is thought that during menstruation, some pieces of uterine lining or endometrial tissue get pushed backwards up the fallopian tubes towards the ovaries and abdominal cavity.
This tissue then implants itself and develops into endometriosis.
Another theory suggests that endometrial tissue is distributed to other parts of the abdomen and body by the lymph or blood system.
Endometriosis is often found in the abdominal surgical scars, giving rise to the theory that it is somehow transplanted during surgery. Endometriosis has, however, been found in such scars when accidental implantation seems unlikely.
Because having a family history of the condition makes severe endometriosis more likely, some also argue that the condition may be carried in the genes.
An emerging theory is that there is an abnormality of local immune responses in the pelvis in susceptible women.
Can endometriosis be prevented?
Endometriosis cannot be prevented, especially if there is a family history of the disease. Using oral contraceptives may reduce the risk of developing endometriosis or prevent it from becoming worse.
Pregnancies before the age of 35 are protective in most women.
What is the course?
The course of endometriosis is unpredictable. Although endometriosis is a chronic and usually progressive condition, the rate of progression varies from woman to woman.
Symptoms may remain stable, decrease without treatment, or suddenly increase. Symptoms may disappear with treatment, but then return later.
As the disease progresses, pain that is unrelated to the menstrual cycle may occur.
Stages of endometriosis
Established criteria for classifying endometriosis are based on where the endometrial tissue is located, whether it is on or buried beneath an organ's surface, and whether growths are thin or dense.
The severity of endometriosis is determined after studying the uterus, fallopian tubes and ovaries, usually through laparoscopy or surgery. It can be classified as minimal, mild, moderate, or severe.
Stage one endometriosis is mild, where tissue growth is slight, scattered around the pelvic cavity and easy to treat.
Stage two is still mild, but is situated more deeply in the tissue.
Stage three endometriosis is moderate, with larger patches of endometrial tissue that is more widely spread. Cysts may be present.
Stage four is severe, where tissue growth is large and deep and most of the organs in the pelvic cavity are affected. The uterus and ovaries are often covered in scar tissue and the fallopian tubes are often blocked.
Complications
Endometriomas
Endometrial tissue attached to an ovary or inside an ovary can form an endometrioma or ovarian cyst lined by endometrial tissue.
These cysts are also called chocolate cysts, because of the dark, red-brown blood inside.
As the endometriosis grows and sheds every month, the fluid inside the cysts accumulates and the cysts grow. These can be serious, as they will progressively destroy normal ovarian tissue, causing infertility.
An endometrioma can rupture or leak, causing sudden, sharp abdominal pain. The material inside the cyst can adhere to surfaces within the abdominal cavity and cause irreversible damage to the fallopian tubes.
Other less common complications of endometriosis may include kidney impairment due to scar tissue build-up blocking urine flow or bowels. The growth of endometrial tissue in the lungs can cause the collapse of a lung while growths in the brain or spinal cord can lead to seizures or paralysis.
Infertility and endometriosis
Although mild endometriosis is not a major cause of infertility (but even with mild endometriosis infertility may occur), about three out of ten women who have endometriosis will have difficulty falling pregnant.
The number of endometrial growths and where they occur will determine whether fertility problems can occur.
Scar tissue formed around endometriosis implants can change the shape or location of the ovaries, fallopian tubes, or uterus. This tissue can block the fallopian tubes, preventing or slowing the movement of eggs from the ovaries to the uterus or surround the ovaries, preventing eggs from moving to the fallopian tubes.
What are the risk factors?
Women in their reproductive years - aged 15 to 50 are the most susceptible. Endometriosis does not usually occur before puberty and is rare in teenagers. When it does however, it appears most often in teenagers who experience painful periods.
Endometriosis usually disappears after menopause. The symptoms may also decrease during pregnancy. This is because no ovulation occurs during these periods of a woman’s life. It is, therefore, the rationale behind using the combined oral contraceptive as treatment as it abolishes ovulation and, therefore, decreases the progression and “shrinks” endometriosis in most women. The amount of vaginal bleeding is decreased by the use of the combined oral contraceptive and so to any bleeding from endometriotic deposits at other sites in the body.
As a woman grows older, her risk of developing endometriosis increases, until menopause, when menstruation ceases and the risk disappears. A family history of the disease, where either a mother or sister suffers from the condition, makes severe endometriosis more likely. The risk of inheriting the condition seems higher from the mother.
Irregular menstrual periods also increase the risk of developing endometriosis. Short menstrual cycles of less than 28 days or long menstrual flows of more than one week increase the risk.
Starting menstrual periods at a young age (before 12-years-old) also increases the risk.
The older you are at your first pregnancy, the higher the risk of endometriosis.
How is it diagnosed?
The diagnosis of endometriosis starts with visiting a doctor and describing your symptoms, menstrual periods and how long you have had problems.
The doctor can perform a pelvic examination, to feel whether any growths are detectable. It is important to visit the doctor during menstruation or when the pain is greatest. Although this can be embarrassing, this is when the endometrial implants will be at their largest and easiest to feel.
Other tests, such as ultrasound scans, computed tomography (CT), and magnetic resonance imaging (MRI), may be used to determine the extent of the disease and follow its development, but their usefulness in diagnosis is limited.
The only sure way to diagnose endometriosis is by a laparoscopic exam.
Laparoscopy is a surgical procedure done under general anaesthetic. An incision is made into the abdomen (through the navel), and a telescopic instrument, called a laparoscope, is inserted so that the doctor can see the reproductive organs and abdominal cavity. One or two more 1cm incisions are also made to put instruments through so that the internal organs may be manipulated and inspected. This is a “day case” procedure and the woman may go home within a few hours of the procedure, although she may not drive a vehicle for 24 hours after the anaesthetic.
Because carbon dioxide gas is used to inflate the abdomen so that organs can be safely visualised, the woman may feel some abdominal discomfort and shoulder pain (the gas irritates nerves on the diaphragm which lead to the shoulders) after the procedure, but this is transient and resolves after 24 to 48 hours.
If growths are found, a small sample of the tissue may be taken for examination at a laboratory, after which a diagnosis of endometriosis can be made. Generally, this is not necessary as endometriosis is diagnosed on naked eye inspection. Photographs (taken by attaching a camera to the laparoscope) are now more commonly taken. These are kept on record and allows the doctor to visually compare findings before and after treatment, should another laparoscopy be necessary later on. It also allows patients to share in visualising their pelvis.
This procedure helps to determine the location, size, and extent of the growths, which can influence treatment options.
When to see a doctor
Women who experience mild endometriosis symptoms, or who are approaching menopause, may decide to adopt a “watch and wait” approach. This involves waiting through several menstrual cycles to monitor the symptoms and to discuss them with their doctor during their next visit.
If a woman begins to experience pain that interferes with daily activities, pain during intercourse, pain during urination or bowel movements, blood in the urine or stools, or finds that she is unable to fall pregnant after trying for 12 months, she should consult a doctor.
Giving your doctor a good description of your symptoms is important. Noting a family history of endometriosis will assist your doctor in attempting to diagnose the disease.
Although there is no cure for endometriosis, a variety of treatment options exist. It is important to find a specialist who can prescribe the most appropriate form of treatment for the disease.
Medication can be prescribed to shrink the endometrial growths to control symptoms, or surgery may be necessary to remove the implants, or in severe cases, the uterus and ovaries.
Deciding on a treatment option
Deciding which treatment option to follow can be complicated, so it is important to evaluate the following:
Whether the symptoms are serious enough to require treatment
Whether you plan to have a child or more children
Whether you are close to menopause – symptoms should stop naturally after menopause. If you are close to menopause, it may be worthwhile to control the symptoms with medication until then.
Whether you prefer to treat your symptoms with medication or surgery
Whether a second opinion from a doctor would be useful
Home treatment
For mild symptoms, where infertility is not a threat, home treatment, as a supplement to professional care, may ease the pain and discomfort of endometriosis.
Painful menstrual periods are the most common symptom of endometriosis. To relieve menstrual pain:
Try an over-the-counter painkiller such as aspirin or ibuprofen, but in some cases, prescription painkillers may be necessary.
Apply heat to the abdomen in the form of a hot water bottle or take warm baths. The heat will improve circulation and blood flow and relieve pain.
Regular exercise also improves circulation and encourages the production of endorphins, the body’s natural pain relievers.
Hormone treatment
Hormone treatment aims to stop ovulation for as long as possible, using oral contraceptives including oestrogen and progesterone, progesterone alone (the two injectable contraceptives, Depo Provera® and Nur-isterate®), testosterone derivatives known as danazol and gestrinome or a gondotropin-releasing hormone drug (GnRH agonists).
An oral contraceptive or progesterone supplement may control endometriosis as long as the synthetic hormones are being used. The therapy can force endometriosis into remission for months or years after going off the hormones.
Danazol suppresses oestrogen levels and increases the amount of testosterone in the body. This prevents ovulation and menstruation and shrinks the uterine lining, which prevents new endometrial implants.
Many women find that this drug relieves the symptoms, but the side effects of this drug such as weight gain, acne, muscle cramps, vaginal dryness, body or facial hair growth, the deepening of the voice and water retention, can be a problem for some women. The drug increases the risk of birth defects, and should be prescribed in conjunction with contraceptives.
The use of GnRH agonists is a more severe treatment, which causes a type of menopause to result. GnRH agonists are strong drugs and should only be considered in very severe situations of intractable pain and prior to infertility treatment. They are generally not used for longer than six months as the risk of osteoporosis occurs due to the low oestrogen levels the medication produces. Because of the side effect of hot flushes (as in the menopause), small amounts of oestrogen are sometimes given with the medication if this becomes a problem for the woman.
Pregnancy
Women with endometriosis are often advised not to postpone pregnancy, as the more the disease progresses, the more likely it is to cause infertility.
Encouraging women to fall pregnant can be difficult, however, as this is a highly personal and life-changing decision.
Other factors also make the decision to fall pregnant difficult. Women with endometriosis may experience a higher risk of miscarriage, ectopic pregnancy, difficult pregnancies and labour.
Research that shows the likelihood of genetic links to endometriosis may also play a role, as women could pass on the risk of developing the disease to their offspring.
Pregnancy often causes a remission of endometriosis, as ovulation ceases causing the growths to shrink.
But it is not a definitive cure - some women report relief from pain during pregnancy, while others report no relief at all. In many cases, endometriosis can return after pregnancy.
Surgery
Surgery may be necessary to remove the growths if they are causing infertility or intestinal or bladder problems. Surgery does not always cure infertility however, and is usually recommended for the treatment of infertility in stages three and four of endometriosis.
Conservative surgery involves the removal or eradication of growths through laparoscopic surgery. During laparoscopic surgery, a doctor will remove patches of endometriosis and cysts by cutting, diathermy (burning them) or with laser treatment.
Laser surgery used to open cysts can remove scar tissue – but this type of surgery may need to be repeated.
During a laparotomy, the surgeon will cut open the abdomen to remove large patches of endometrial tissue or cysts. The doctor may also repair any damage caused by the endometriosis.
In severe cases, the removal of the uterus (hysterectomy), ovaries and endometrial growths may be necessary. While this may provide some relief for many women, it may not be a cure for the disease. Research has shown that women who undergo a hysterectomy alone for endometriosis can experience a recurrence of the disease. It is important for women thus to understand what surgery can offer. Removing the ovaries (i.e. removing the hormonal production which fosters growth of endometriotic deposits) is a very radical treatment and has to be weighed up against the quality of life of the woman.
In addition, the hormone therapy treatment often prescribed after removal of the ovaries (oophorectomy) can cause other health problems, especially in women at risk of breast cancer or heart disease. Careful and informed counselling of the woman is, therefore, mandatory.
Menopause
Generally, the onset of menopause usually results in the decrease of endometriosis.
However, severe endometriosis can be reactivated by hormone replacement therapy or continued hormone production after menopause.
Alternative treatments
Less-traditional methods of treating endometriosis exist, such as alternative or Chinese medicine, homeopathy, massage and acupuncture.
While not a cure for the disease, adopting a healthier lifestyle – good nutrition, regular exercise - may significantly improve endometriosis symptoms.
Reviewed by Dr Carol Thomas, MBCHB(UCT), FCOG(SA), MMED(O&G)(UCT).
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