Endometriosis is a condition in which tissue similar to the lining inside the uterus (called “the endometrium”) is found outside the uterus on structures such as the pelvic peritoneum, the ovaries, the recto-vaginal septum, the bladder, and the bowel.
The areas of endometrial-like tissue outside the uterus (the endometriotic lesions) respond to the ovarian hormones of the menstrual cycle in the same way as the endometrium inside the uterus. Like the endometrium in the womb, the lesions thicken and swell with blood in a monthly cycle. This swelling causes inflammation which in turn can be painful.
It is not fully understood why some women develop endometriosis and others do not. There are several theories that explain the disease. The most accepted one is retrograde menstruation: when a woman is having her period, small amounts of menstrual blood flow backward through the fallopian tubes into the pelvic and abdominal cavities. This blood contains endometrial cells that shed during menstruation. Some of the cells attach and implant onto the pelvic and abdominal cavities. They then start to grow and multiply developing into patches or nodules of endometriotic tissue.
Endometriosis is known to run in families. Although a gene that causes endometriosis has not yet been isolated, the sister or the daughter of a woman with endometriosis is seven times more likely to have the disease than someone who does not have a first degree relative with the disease.
Endometriosis symptoms may vary and the severity of symptoms doesn't always correlate to the amount of disease found.
Pain is the most common symptom. Women who have endometriosis commonly experience pelvic, abdominal and lower back pain. The pain usually has a cyclical nature and is more severe on the days leading to and during a woman's period. Pain can also be present during or after sexual intercourse, and in cases where the disease implants on bowel or bladder, bowel movements or passing urine can be uncomfortable.
Changes in the menstrual pattern can be a sign of endometriosis. These are not always accompanied by pain. The most common change is bleeding outside the normal period days.
Infertility is present in 30% of women who have endometriosis.
Women with cyclical pain and infertility should be investigated for endometriosis. In addition, even in the absence of pain, when no other cause of infertility is apparent, endometriosis should be considered.
Other symptoms are less specific, but sometimes can be the first signal that a woman has endometriosis. They include bloating, diarrhoea, constipation, increased urinary frequency, tiredness or fatigue and pre-menstrual symptoms.
All of these symptoms can have other causes so it is important to investigate other possible medical conditions.
The best way to diagnose endometriosis is through a laparoscopy, also known as keyhole surgery, where a camera is inserted into the abdomen through a small incision near the umbilicus.
Endometriotic lesions can then be seen by the surgeon and samples can be taken and sent to pathology. Histopathologic (biopsy) evidence is the definitive confirmation of the disease.
Other tests can suggest the presence of the disease, but to date there are no non-invasive ways of making an unequivocal diagnosis.
Ultrasound is the principal mode of imaging used for the pelvis as it is very effective to assess the uterus and ovaries. However, most endometriotic lesions are not visible on ultrasound. The ultrasound can show endometriosis in cases where there is an endometriotic cyst on one or both ovaries (endometrioma) and/or when there are large nodules of disease visible in the pelvis.
Magnetic Resonance Imaging
MRI is another useful resource to assess endometriosis. Similar to ultrasound, it does not show most superficial endometriotic lesions, but can be very useful to assess more severe forms of the disease when there are ovarian cysts or nodules affecting the vagina, the rectum or the bladder.
There has been a lot of research trying to find a blood test for endometriosis. To date, there is no reliable blood test to diagnose the disease.
CA 125 is a protein that is found in greater concentration in tumour cells than in other cells of the body. Women with ovarian cancer can have high levels of CA 125 in the blood.
Although some women with endometriosis also show high levels of CA 125 in the blood, the test is not reliable and should not be routinely used to diagnose the disease.
To date, there is not one single test that reliably diagnoses endometriosis and the definitive diagnosis of the disease still requires a laparoscopy.
The decision to do a laparoscopy is done after considering the symptoms, physical examination and ultrasound results. Some women with endometriosis do not require laparoscopy if their initial symptoms are well controlled with medical treatments such as the birth control pill or the hormonal IUD.
Treatment and Follow Up
Not every case of endometriosis requires treatment. Endometriosis is a benign disease, i.e., it is not cancer and, in most cases, does not cause major harm. The two main reasons to try to make a definitive diagnosis of endometriosis and to treat it are pain and infertility.
The treatment can be surgical, by removal of endometriosis implants, nodules or cysts during the laparoscopy and/or with medication. There are several options for medical treatment. These include hormonal contraceptives and drugs that block ovarian function.
Other options include pain killers, natural therapies and life style changes. During pregnancy, there is usually a reduction of the symptoms associated with endometriosis.
In the case of pain, it has been well demonstrated that surgical removal of endometriotic lesions improves the symptoms.
In the case of infertility, the evidence is not very conclusive and different types of endometriosis seem to impact fertility differently. Each case should be individually discussed on its own merits.
Endometriosis can be a chronic recurrent condition requiring more than one operation and many years of follow up. It often affects young women before they have had children and treatment aims at preserving fertility by preserving the reproductive organs, i.e., uterus, ovaries and fallopian tubes.
Frequently Asked Questions
Is all endometriosis the same?
There are two main types of endometriosis; superficial and deep infiltrating. Superficial endometriosis presents as lesions over the peritoneal membrane that covers the pelvic and abdominal cavities. Deep endometriosis presents as nodules which infiltrate the pelvic organs, most commonly the uterine ligaments, recto-vaginal septum, bladder and rectum. Also, there are different degrees or levels of disease depending on the amount of endometriosis seen, the number of organs involved and the degree of scarring and internal adhesions. Endometriosis may be simply classified as mild, moderate or severe or in more detail by Stages 1 through to 4. Lastly, endometriosis can be asymptomatic. In the absence of symptoms, women won't know that they have the disease.
I have been diagnosed with endometriosis. Will I ever be able to fall pregnant?
It's impossible to respond with certainty as every case is different and we don't know until you try to conceive. The answer is most likely yes as two thirds of women who have endometriosis still fall pregnant naturally and the others usually respond well to fertility treatment.
Is endometriosis contagious? Can I get it from someone else?
No. Endometriosis is not a transmissible disease. You don't get it through sex or contact with other people that have the disease.
Can I treat endometriosis with Natural Therapies and Complementary Medicine?
None of these modalities will cure endometriosis, but many have been shown to help manage the symptoms. Acupuncture, herbal therapy, massage techniques, exercise under the guidance of a trained professional, good nutrition, and adopting a generally healthy lifestyle, while not a cure for the disease, may improve the symptoms
Will I cure my endometriosis if I fall pregnant?
No. Most women will have a reduction of symptoms during pregnancy, but it may recur after childbirth and breastfeeding. Falling pregnant can be a good thing as it removes one of the anxieties about endometriosis. Also, after completing the family, other more aggressive surgical options can be considered. It should never be suggested that a woman fall pregnant to treat or cure her endometriosis. This should be a personal decision based on her life circumstances, as with anyone else.
Who do I see if I think I have endometriosis?
Several professionals are able to help. Your GP is usually a good first call to help you assess your symptoms and the need for a specialist referral. They can also prescribe medical treatment which is sometimes all you need. If you require surgical treatment it is important to see a specialist Gynaecologist who has experience in endometriosis and laparoscopic surgery. Depending on the level of endometriosis the operation can be quite complex and not everyone is trained to do it. Physiotherapists, dieticians and fitness trainers can help with auxiliary treatments and lifestyle changes.
How do I know if I have endometriosis?
You can't know whether you have endometriosis until you have seen a specialist and he or she makes the diagnosis. A definitive diagnosis usually requires a laparoscopy. You can suspect that you have endometriosis if you have any of the symptoms described above.
Do I need to see a doctor if a close relative was diagnosed with endometriosis?
Not necessarily. Having a family history of endometriosis increases your risk of having the disease, but doesn't mean that you will necessarily have endometriosis and you should only see a doctor if you have symptoms.
I was treated for endometriosis in the past and now I seem to have the same symptoms again. What does this mean?
Endometriosis is a chronic disease and the conditions that made it occur the first time are usually still present until menopause. Recurrences are therefore common. On average, one in three patients who had a laparoscopy for endometriosis will require a repeat procedure within five years.
Can children and post-menopausal women have endometriosis?
Usually not. Endometriosis is made to grow by the ovarian hormones. These are present after puberty and stop around menopause. Although not impossible, it is very unlikely that a girl who has not started her periods or a woman who has reached menopause will develop endometriosis.
Is there a cure for endometriosis?
There is no definitive cure for endometriosis, but there is treatment. Surgical treatment aims at removing the endometriotic lesions. Medical treatment aims at alleviating the symptoms and presenting formation of new lesions. Different women may require different treatments or a combination of treatments.
Is endometriosis cancer?
No. Endometriosis is a benign disease and although it can spread it does not behave like cancer. There is some research that shows that women with endometriosis have a slightly higher risk of developing ovarian cancer, but this is still not well established. There are also some rare cases where endometriotic ovarian cysts have become cancerous.
Endometriosis Australia: https://www.endometriosisaustralia.org/
World Endometriosis Society : http://endometriosis.ca/