Endometriosis: Symptoms, Causes and Diagnosis - What to know
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What is Endometriosis?
Endometriosis is a common disease. The cells similar to those that line the uterus (womb), called the endometrium, grow in other parts of the body. They usually grow in the pelvic area - outside the uterus, typically on the ovaries, fallopian tubes, intestines, but can move to almost any part of the body.
Even though they are not in the uterus, the cells still respond to messages from the ovaries. The endometriosis tissue gets full every month and then bleeds during the menstrual period. Over time, this process can lead to inflammation and scarring, and can cause organs to stick together in places which are known as adhesions.
Endometriosis is a progressive, chronic condition. It can be very painful and it can affect fertility. In the UK, about 1 in 10 individuals assigned female at birth, develop endometriosis from puberty to menopause, and the condition causes tens of thousands of hospitalizations every year. On average, it takes 6.5 years to be diagnosed.
While there is no cure for endometriosis and it lasts until menopause or beyond, there are effective treatments that may relieve the symptoms.
What are the symptoms of endometriosis?
Symptoms are variable and this may contribute to the delay of the diagnosis. Common symptoms include painful periods, painful intercourse and general pelvic pain that puts life on hold around or during a person’s menstrual period. It can also have an impact on fertility for some but not for everyone.
Whilst endometriosis most often affects the reproductive organs, it is frequently in the bowel and bladder and it has been also found in muscle, joints, the lungs and the brain.
In addition to that, there are many conditions associated with endometriosis. These include:
Migraine and headaches
Chronic Fatigue Syndrome
Irritable Bowel Syndrome
Fibromyalgia
Pelvic floor muscle spasm
Interstitial Cystitis
Depression
Central Pain Syndrome
Allergies
Asthma
Ovarian and breast cancer
What causes endometriosis?
The exact causes of endometriosis are unknown, but possible causes that are being researched include:
Problems with menstrual flow: Endometrial tissue shed during a period might travel through the fallopian tubes into other areas of the pelvis
Genes: The condition runs in families, so it could be inherited (passed from parent to child)
Hormones: Estrogen, produced by the ovaries, might contribute to endometriosis
Immune system disorder: An immune problem could prevent the body from recognizing and destroying endometrial tissue outside the uterus
Surgical complications: During abdominal surgery, endometrial tissue could accidentally be moved to other areas
How is endometriosis diagnosed?
In many cases individuals discover they have endometriosis after seeing a doctor due to infertility, or when it is found during an operation for a different condition.
To diagnose endometriosis, your doctor will probably ask about your symptoms and periods.
Laparoscopy and biopsy are the golden standard to diagnose endometriosis. This is a type of surgical procedure that allows doctors to look for endometriosis tissue in the abdomen, and a biopsy, where a small sample of tissue is taken to examine in the laboratory.
At East Anglia Ultrasound Services, using focused transvaginal ultrasound imaging, we can locate endometriosis, determining where it has spread beyond the uterus to other areas of the pelvis. This information assists doctors in determining the best path for treatment, although with ultrasound is not always possible to diagnose deep infiltrating endometriosis due to bowel gas.
There are 4 stages or grades of endometriosis, depending how severe the disease is:
Stage/grade I (mild): there are small patches of endometriosis scattered around inside the pelvis.
Stage/grade 2 and 3 (moderate): the disease is more widespread and can be found on the ovaries and other parts of the pelvis. There may also be significant scarring and adhesions.
Stage/grade 4 (severe): the disease has spread to most of the pelvic organs.
Why does endometriosis cause pain?
Endometriosis causes a significant amount of inflammation that can result in scarring and nerve damage. The scarring and nerve damage stimulates your spinal cord and ultimately sends continuous pain signals to your brain. When pain signals are long-term and severe, phenomena such as spinal wind-up and neuroplasticity occur, leading to difficult-to-treat chronic pain.
Interestingly, a person can have mild or severe endometriosis and not have any pelvic pain. So, there must be other factors at work in regulating how much pain someone experiences from endometriosis.
In general, multiple factors make up your pain threshold — the amount of pain it takes before you actually feel pain. These factors are: genetic, experiential, psychological.
What is the treatment for endometriosis?
Endometriosis is usually treated with medicines, surgery and complementary treatments such as physiotherapy and psychology. Treatment will depend on:
Symptoms
Severity of your endometriosis
Whether or not the patient wishes to become pregnant in the future
Medicines for endometriosis include hormone-based treatments like the pill or an implant or IUD and pain relief medicine. Hormone treatments can reduce pain and reduce the growth of endometrial cells. However, they work only as long as you take them.
Surgical treatment aims to remove as much of the endometriosis as possible. There are several options, including laparoscopic surgery where a small cut is made in the abdomen to allow examination and removal of the endometrial tissue. Surgery may also be combined with medicines. In very severe cases, a hysterectomy to remove the whole womb might be suggested.
A physiotherapist can help with bladder and bowel problems and a clinical psychologist can help you to manage chronic pain.
Although most individuals with endometriosis become pregnant without medical assistance, about 1 in 3 patients have trouble with fertility. Fertility such as IVF can help in most of these cases.
Even if the endometriosis is treated, pain may not disappear. The endometriosis may return.
If you are living with endometriosis, make sure you get plenty of sleep, exercise regularly and reduce stress as much as possible.
COMMON QUESTIONS ABOUT ENDOMETRIOSIS
WHO GETS ENDOMETRIOSIS?
In most cases, women develop endometriosis during their reproductive or menstruating years. Up to 10% of women have endometriosis, although it’s possible the condition could go undiagnosed.
IS ENDOMETRIOSIS A SEXUALLY TRANSMITTED DISEASE OR INFECTIOUS?
No — endometriosis isn’t contagious, and it’s not an STD. So you can’t pass it to another person.
HOW DOES THE UTERINE TISSUE GET WHERE IT DOESN’T BELONG?
Physicians and medical researchers haven’t identified a specific cause. Still, the most widely held belief is that when you shed your uterine lining during your period, that tissue flows backward through your fallopian tubes. It then sticks to non-uterine tissue. Some physicians believe that this “retrograde” menstruation frequently occurs, although in most cases, the tissue dissolves.
WHY SHOULD I SUSPECT ENDOMETRIOSIS?
While pelvic pain is the hallmark symptom of endometriosis, you shouldn’t necessarily assume that this condition is the cause of your discomfort. There are many other reproductive and gastrointestinal health issues that can cause severe pelvic pain.
Additionally, some women with endometriosis don’t have pain, and the severity of endometriosis symptoms doesn’t necessarily correlate with the severity of the disease. If you have severe or chronic pelvic pain, you should make an appointment with one of the expert sonographers at East Anglia Ultrasound Services.
WHY DOES ENDOMETRIOSIS CAUSE PAIN IN SOME WOMEN?
Endometriosis causes scar tissue and inflammation that may intensify around your period. Your irritated and inflamed tissue causes severe pain associated with endometriosis.
IS THERE A SIMPLE TEST FOR ENDOMETRIOSIS?
Yes, this non-invasive test, called Ziwig Endotest allows for the early detection of all types endometriosis with a performance that exceeds that of conventional diagnostic tests (sensitivity >95%, specificity >95%, diagnostic accuracy AUC 98%).
Instructions for collecting saliva samples
30 Minutes before sampling
Wash your hands
Do not chew gum
Do not use if you are sick (infection)
Do not wear lipstick
Do not eat or drink
Do not brush your teeth
Do not smoke
Inside the Ziwig Endotest Kit
The quantity of liquid must be sufficient, and exceed the filling line by at least 1cm (not including bubbles).
Contact us for further details about obtaining your test kit
DO I NEED TO HAVE A HYSTERECTOMY?
While hysterectomies used to be a standard treatment for endometriosis, these days, you have other options, including medication and radical resections. These minimally invasive procedures remove the abnormal endometrial tissue leaving reproductive organs and fertility intact.
WILL ENDOMETRIOSIS AFFECT MY ABILITY TO BECOME PREGNANT?
In severe cases, endometriosis can damage your fallopian tubes or ovaries, decreasing your chances of becoming pregnant naturally.
IS ENDOMETRIOSIS CANCER?
No. While endometrial growths are sometimes called benign tumors and involve abnormal tissue development, it isn’t cancer. In very rare situations, endometrial cysts can lead to cancer, but this is highly unlikely, and research that supports this correlation is controversial.
CAN I PREVENT ENDOMETRIOSIS?
At this time, there isn’t anything you can do to prevent endometriosis. However, you can protect your overall health by eating nutritious foods, exercising daily, and getting plenty of sleep.
In addition, if you have a family history of endometriosis, talk to your GP about your risk and get personalised advice for optimising your health and monitoring your reproductive health for signs of disease.
Sources:
RANZCOG (Endometriosis), Jean Hailes (Endometriosis), Department of Health (National Action Plan for Endometriosis), Reproductive Endocrinology and Infertility (Endometriosis: Epidemiology, Diagnosis and Clinical Management), Elsevier Patient Information (Endometriosis)
