We all know that women are strong and resilient. Perhaps it is these characteristics that have meant endometriosis – a disease as common as asthma or diabetes – has gone unnoted, unheard of and unrecognised by health carers, governments and sometimes even women themselves. So what is endometriosis and why is it worthy of our attention?
Endometriosis is a disease where tissue similar to the lining of the uterus (called the endometrium) grows outside of the uterus. This tissue has glands, blood vessels and muscle cells and these groups of cells cluster and lead to a number of different symptoms including a range of different types of pain and infertility. Since the tissues have glandular cells, they are responsive to hormones and therefore throughout a woman’s menstrual cycle they become active and release a range of chemicals that cause inflammation.
If inflammation sounds painful, then you are right, it is, and these lesions may sit on tissues in the pelvis causing general pelvic pain, as well as the bladder, bowel or even under the ribs and on the diaphragm (the thin but broad muscle that separates the chest and the abdomen) causing shoulder or chest pain. There are a number of different types of pain that endometriosis may lead to:
- Dysmenorrhea = Painful periods. Women often expect that periods will be painful, and indeed the menstrual cycle leads directly to the creation of a host of chemicals that are pain causing. It is considered that nearly all women will experience pain with their periods at least once in their life and some 50% have painful periods each and every time they menstruate. So how do you know if endometriosis is present based on this symptom alone? A good question and it comes down to the presence of any other pain symptoms, difficulty becoming pregnant or a family history of endometriosis – since there is a strong genetic component to the disease. If you or someone you know has periods that stop them in their tracks each and every month and do not allow them to have quality of life, that is not normal. It takes up to 9 years for endometriosis to be diagnosed, so look out for this early warning sign and seek an opinion if you are concerned.
- Dyspareunia = Pain with intercourse. Perhaps not surprisingly, if there are lesions in the pelvis, around the tissues that move during intercourse including the lining of the pelvis, the ligaments that hold the uterus to the walls of the pelvis and the vagina, then intercourse may be painful for some women with endometriosis. Not only are the lesions activated at this time, but the muscles around the vagina may also become contracted and increase or independently cause pain.
- Dyschesia = Pain with bowel movements. Endometriosis does not have to be on the bowel, but simply around the bowel for this symptom to occur. Again, there are chemicals that may contribute to direct contractions of the bowel or lesions around the bowel may lead to inflammation when stool is passing through the area. This interaction between local factors, muscle contractions and inflammation all contribute to the pain and increase the complexity of the pain – and the complexity of its treatment.
- Non cyclic pelvic pain = Pain that may occur at any time. Just because. With all that may be occurring in the pelvis, intermittent pain unrelated to specific actions, events or the cycle often feature in endometriosis.
- Low back pain. A self explanatory type of pain that may be present. This may be inflammatory, muscular or skeletal and determining what is happening will help in diagnosis and treatment.
- Bladder symptoms. Pain when the bladder fills or empties may occur and again is a complex symptom that is not just about disease on the surface of the organ. The close relationship of the uterus and ovaries to the bladder, the muscular nature of the bladder and its responsiveness to chemical and inflammatory factors may lead to symptoms in this organ, even in the absence of direct disease.
These are not all the pain symptoms that women experience, but many of the most common. Sometimes all of these symptoms are present in the same woman. In addition, women may have difficulty becoming pregnant. The exact mechanism for this reduction in fertility has eluded researchers for many years, although there are a number of theories, including a decrease in the quality of eggs produced due to chemical production including types of iron compounds that are common in endometriosis sufferers. Other theories include a change in the way an embryo is transported through the reproductive system or an alteration in the way the embryo settles and implants into the endometrium (the uterine lining).
How is endometriosis diagnosed?
There is no scan and no blood test that can diagnose endometriosis. The only way that endometriosis is definitively diagnosed is by a laparoscopy. This is an invasive surgical procedure where a camera is inserted into the abdomen under an anaesthetic to look for disease and take a biopsy (tissue sample) that is then examined under a microscope. This is not essential, as there are a variety of treatments for endometriosis that do not require surgery to confirm the disease and it is the presence of symptoms that may drive the treatment options for any woman.
Medical treatment with both hormonal and non-hormonal drugs are options, even in the absence of a surgical diagnosis, and may be a very good first line choice for women. When fertility is an issue, surgery may be needed or consideration of some type of ART (assisted reproductive technology – such as IVF although there are others) may offer benefit.
Apart from medical and surgical options, lifestyle and conservative managements including diet, exercise, meditation, acupuncture, herbal medicines and mindfulness are all options for women.
Endometriosis is a common and chronic condition for women. There is no ‘cure’ such as having a baby or even having a hysterectomy. It is a variable and complex disease that may present in a woman’s teenage years and persist right through to menopause – and even rarely beyond this time (thankfully this is very uncommon but is known to occur). Pain symptoms such as those listed above, troubles becoming pregnant or a combination of these should alert women to the possibility of endometriosis and seeking an expert medical opinion is advantageous. Make sure that you are offered a range of options, rather than just direction to a procedure and remember that this is probably not just one disease, but a range of different diseases that manifest in the same way (think of it like diabetes or arthritis – many different symptoms and many different manifestations in different people). It is not a one-size-fits-all condition and whilst there are a limited number of options, control of symptoms so that your quality of life is maximised is what it is all about.
So, be endo-aware in the month of March. There are a variety of events on for you to become involved and raise awareness in our community. Alana Healthcare for Women is a proud sponsor of Luminosity – a yoga event that is for the entire family. Come and show your support for all the women in your life. For more details of this and other endometriosis events see the following:
At Alana Healthcare for Women we are dedicated to caring for the health of women at any age. Please read more about our Gynaecology services here.