Endometriosis is a common and sometimes painful condition of the reproductive system, which affects up to one in 10 women. Despite it being so common, it is often misdiagnosed because it has similar symptoms to many other conditions, including irritable bowel syndrome, ovarian cysts and pelvic inflammatory disease.
For some women, endometriosis can cause a wide range of frustrating and debilitating symptoms such as pelvic, abdominal and back pain, heavy and painful periods and infertility. sometimes it can be so severe that women are unable to go to work or school, or go about their daily routine. But while it might cause hardship, discomfort and inconvenience, it’s generally not life threatening.
What is endometriosis?
Endometriosis is a condition where tissue similar to the inner lining of the womb (endometrium) is found elsewhere, usually in the pelvis around the womb, ovaries and fallopian tubes. It is a very common condition, affecting around 1 in 10 women. You are more likely to develop endometriosis if your mother or sister has had it. Endometriosis usually affects women during their reproductive years. It can be a long-term condition that can have a significant impact on your general physical health, emotional well-being and daily routine.
Every month a woman’s body goes through hormonal changes. Hormones are naturally released which cause the lining of the womb to increase in preparation for a fertilized egg. If pregnancy does not occur, this lining will break down and bleed – this is then released from the body as a period.
Endometriosis cells react in the same way – except that they are located outside the womb. During the monthly cycle hormones stimulate the endometriosis, causing it to grow, then break down and bleed. This internal bleeding, unlike a period, has no way of leaving the body. This leads to inflammation, pain, and the formation of scar tissue (adhesions).
Endometriosis is most commonly found inside the pelvis, around the ovaries, the fallopian tubes, on the outside of the womb or the ligaments (which hold the womb in place), or the area between your rectum and your womb, called the Pouch of Douglas. It can also be found on the bowel, the bladder, the intestines, the vagina and the rectum. You can also have endometrial tissue that grows in the muscle layer of the wall of the womb (this is another condition called adenomyosis). Endometriosis can grow in existing scars from previous operations. In rare cases, it has been found in other parts of the body such as the skin, the eyes, the spine, the lungs and the brain. The only site that endometriosis has not been found is the spleen.
Who gets endometriosis? Any woman, from teenagers through to those aged in their 40s, is susceptible to endometriosis, however you are more likely to develop the condition if you have the following risk factors: • have not had children • are overweight • have heavy or prolonged periods • had your first period at an early age, i.e. before 12 years of age • have a family history of endometriosis, e.g. mother, sister, aunt. Women in this group are twice as likely to develop the disease and are also likely to have a more severe form of the disease.
Why does it occur?
There is no proven cause for endometriosis. There are several theories as to what can cause the condition. However, each theory does not fully explain how endometriosis appears and the actual cause remains unknown. These theories are:
This theory suggests that when you have a period, some of the endometrium (womb lining) flows backwards, out through the fallopian tubes and into the abdomen. This tissue then implants itself on organs in the pelvis and grows. It has been suggested that most women experience some form of retrograde menstruation, but their bodies are able to clear this tissue and it does not deposit on the organs. This theory does not explain why endometriosis has developed in some women after hysterectomy, or why, in rare cases, endometriosis has been discovered in some men when they have been exposed to oestrogen through drug treatments.
Lymphatic or circulatory spread:
This theory is that endometriosis tissue particles somehow travel round the body through the lymphatic system or in the bloodstream. This could explain why it has been found in areas such as the eyes and brain.
Genetic predisposition to the condition:
This theory suggests that endometriosis is passed down to new generations through the genes of family members. Some families may be more susceptible to endometriosis.
This theory is that for some women, their immune system is not able to fight off endometriosis. Many women with endometriosis appear to have reduced immunity to other conditions. It is not known whether this contributes to endometriosis or whether it is as a result of endometriosis.
Environmental causes – such as dioxin exposure:
The theory is that certain toxins in our environment, such as dioxin, can affect the body, the immune system and reproductive system and cause endometriosis. Research studies have shown that when animals were exposed to high levels of dioxin they developed endometriosis. This theory has not yet been proven for humans.
This is the process where one type of cell changes or morphs into a different kind of cell. Metaplasia usually occurs in response to inflammation and enables cells to change to their surrounding circumstances to better adapt to their environment.
What are the symptoms of endometriosis?
Symptoms of endometriosis can include:
• Pain. Women with endometriosis may have many different kinds of pain. These include:
- Very painful menstrual cramps. The pain may get worse over time.
- Chronic (long-term) pain in the lower back and pelvis
- Pain during or after sex
- Intestinal pain
- Painful bowel movements or pain when urinating during menstrual periods
- Bleeding or spotting between menstrual periods
- Infertility, or not being able to get pregnant
- Stomach (digestive) problems. These include diarrhea, constipation, bloating, or nausea, especially during menstrual periods.
How is endometriosis diagnosed? Your doctor will talk to you about your symptoms and do or prescribe one or more of the following to find out if you have endometriosis:
• Pelvic exam. During a pelvic exam, your doctor will feel for large cysts or scars behind your uterus. Smaller areas of endometriosis are harder to feel.
• Imaging test. Your doctor may do an ultrasound to check for ovarian cysts from endometriosis. The doctor or technician may insert a wand-shaped scanner into your vagina or move a scanner across your abdomen.
Both kinds of ultrasound tests use sound waves to make pictures of your reproductive organs. Magnetic resonance imaging (MRI) is another common imaging test that can make a picture of the inside of your body.
• Medicine. If your doctor does not find signs of an ovarian cyst during an ultrasound, he or she may prescribe medicine to lessen your pain. If your pain gets better with medicine, you probably have endometriosis.
• Laparoscopy. Laparoscopy is a type of surgery that doctors can use to look inside your pelvic area to see endometriosis tissue. Surgery is the only way to be sure you have endometriosis. Sometimes doctors can diagnose endometriosis just by seeing the growths. Other times, they need to take a small sample of tissue and study it under a microscope to confirm this.
What are my options for treatment?
There are several different medications to help relieve your pain. These can range from over-the-counter remedies to prescribed medications from your healthcare professional. In more severe situations, you may be referred to a specialist pain management team.
These treatments reduce or stop ovulation (the release of an egg from the ovary) and therefore allow the endometriosis to shrink by decreasing hormonal stimulation. Some hormone treatments that may be offered are contraceptive and will also stop you becoming pregnant.
• The combined oral contraceptive (COC) pill or patch given continuously without the normal pillfree break; this usually stops ovulation and temporarily either stops your periods or makes your periods lighter and less painful
• An intrauterine system (IUS/Mirena®), which helps to reduce the pain and makes periods lighter; some women using an IUS get no periods at all
• Progestogens in the form of injection, the mini pill or the contraceptive implant. Other hormonal treatments are available but these are not contraceptives. Therefore, if you do not want to become pregnant, you will need to use a contraceptive as well.
Non-contraceptive hormone treatments include:
• Progestogens in the form of tablets
• GnRHa (gonadotrophin-releasing hormone agonists), which are given as injections, implants or a nasal spray. They are very effective but can cause menopausal symptoms such as hot flushes and are also known to reduce bone density. To help reduce these side-effects and bone loss, you may be offered ‘add-back’ therapy in the form of hormone replacement therapy (HRT).
Surgery can treat or remove areas of endometriosis. The surgery recommended will depend on where the endometriosis is and how extensive it is. This may be done when the diagnosis is made or may be offered later. Success rates vary and you may need further surgery. Your gynaecologist will discuss the options with you fully.
Possible operations include:
• laparoscopic surgery – when patches of endometriosis are destroyed or removed
• laparotomy – for more severe cases. This is a major operation that requires a cut in the abdomen so that areas affected with endometriosis can be removed to provide symptom relief.
This may involve removing large endometriotic cysts from your ovaries or even removal of your ovaries with or without performing a hysterectomy (removing the womb). You will not be able to have children after a hysterectomy. Longer term pain relief is more likely if your ovaries are removed. However, because of the health risks associated with removal of ovaries, your healthcare professional will discuss this and the possible need for hormone replacement therapy (HRT) with you.
Sometimes other surgeons, such as bowel specialists, will be involved in your surgery. If you have severe endometriosis, you will be referred to an endometriosis specialist centre where a specialist team that could include a gynaecologist, a bowel surgeon, a radiologist and specialists in pain management will discuss your treatment options with you.
Getting pregnant can be a problem for some women with endometriosis. Hormonal treatment is not advisable when you are trying to conceive and surgical treatment may be more appropriate. Your healthcare professional should provide you with information about your options and arrange timely referral to a fertility specialist if appropriate.
Although there is only limited evidence for their effectiveness, some women may find the following therapies help to reduce pain and improve their quality of life:
• transcutaneous electrical nerve stimulation (TENS)
• vitamin B1 and magnesium supplements
• traditional Chinese medicine
• herbal treatments