Endometriosis - Symptoms, Causes, Treatment

Endometriosis - Symptoms, Causes, Treatment

Overview of Endometriosis

Endometriosis, also referred to as endo, is a disease which affects women and is characterized by an abnormal growth of endometrial cells outside of the uterus. What sets this apart from normalcy is that in the case of endometriosis, cells or tissues are found forming outside of the uterus instead of inside where its meant to be. Endometriosis is the leading cause of infertility, cramps, pelvic pain, abnormal painful and heavy periods as well as painful sex (dyspareunia).

Usually, when a woman’s not pregnant, the built-up tissues are expelled once every month through the menstrual flow. Endometriosis is most commonly found forming on other organs in the pelvic and abdominal region and can result in the area becoming inflamed or swollen while also causing the development of scar tissue. This is because the tissues in endometriosis work in a similar manner as they would if they were inside the uterus. The tissues grow and thicken and because there's no way for them to exit the body, thus leading to inflammations and lesions which, in turn, can trigger a plethora of complications.

In most cases, endometriosis can be found growing in the pelvic regions. These can be found forming behind the uterus, on the tissues that hold the uterus in place, on or under the ovaries, fallopian tubes, on the bowels or bladder. Other potential sites where endometriosis growths can be found include the cervix, vagina, vulva, bladder, bowel, and rectum. In some rarer instances, they can even be found growing in the lungs, kidneys or other parts of the body such as the diaphragm, appendix, and on the calf muscles (gastrocnemius) as well.

As per various studies, endometriosis is said to affect about 1 in 10 women (between 6 and 10 percent) of reproductive age and an estimated 176 million women across the world. In the UK, endometriosis has been regarded as the second most common gynaecological condition affecting 1 in 10 women of reproductive age. Further, it has been estimated that in the UK, nearly 1.5 million women are currently living with the condition.

 It’s imperative that one understands that endometriosis is neither an infection, not contagious and definitely not cancer either. However, endometriosis has also been linked to other disorders including certain autoimmune diseases, certain cancers (breast and ovarian), adenomyosis – a similar condition where the endometrium breaks through the muscle wall of the uterus, asthma, fibroids, fibromyalgia, chronic fatigue syndrome, chemical sensitivities, and interstitial cystitis – a chronic bladder health issue. Endometriosis has also been regarded as one of the leading reasons for laparoscopic surgery and hysterectomy in the United States. Most women go undiagnosed, and it can take anywhere between 8 - 10 years to receive a diagnosis. This is because in the case of many people, they don’t exhibit any symptoms, and also because confirming an accurate diagnosis mandates the need for a surgical procedure. Diagnosis usually happens in women in their 30s and 40s.

Stages of endometriosis

Endometriosis can be classified into one of four stages Stage I is considered to be Minimal, Stage II is regarded as         Mild, Stage III as Moderate while Stage IV is considered to be the Severe. The parameters used for staging is dependent on the precise location, extent and depth of the endometriosis implants along with the presence, size, and severity of the scar tissues and the endometrial implants in the ovaries.

Most women diagnosed with endometriosis fall usually into the minimal or mild category which basically entails that there's a presence of superficial implants along with mild scarring. In that regard, endometriosis termed as moderate and severe results in the formation of cysts as well as cases of severe scarring. It, however, needs to be mentioned that in no way do these

stages correspond to the pain and discomfort levels or the nature of symptoms a woman experiences. For instance, although a woman might be diagnosed with Stage 1 endometriosis, it doesn't automatically mean that her pain is less compared to a woman diagnosed with Stage 4 endometriosis. Therefore, someone diagnosed with minimal to mild endometriosis can indeed experience more pain vis-à-vis someone diagnosed with severe endometriosis. Additionally, unlike cancer, endometriosis doesn’t grow or progress in stages which means it can be widespread from the first stage itself. That said, although infertility is a more common phenomenon associated with stage IV endometriosis, there are chances that a woman diagnosed with Stage 1 endometriosis might be more infertile vis-à-vis a woman with Stage 4 endometriosis.

To make things simpler and give the staging more structure and emphasis, the Endometriosis Foundation of America has classified it in four categories on the basis of where the disease is located and how it affects the patient.

Category 1: Peritoneal or Superficial endometriosis

Category 2: Ovarian endometriomas

Category 3: Deep infiltrating endometriosis 1

Category 4: Deep infiltrating endometriosis 2

Symptoms of Endometriosis

In the case of endometriosis, symptoms experienced by women can vary from individual to another. While there are chances that a woman might experience a lot more symptoms accompanied by severe pain, there’s also a likelihood that the other individual might not experience any symptoms at all. Similar to the stages, there is no direct link between the severity of the symptoms and the severity of the condition. The nature of symptoms and their associated severity is rather connected to where the endometrial tissue is located and the number of endometrial cells that are growing. Moreover, the varied nature of the symptoms ensures that a diagnosis can take a long time. Symptoms can also be cyclical – meaning they surface only during certain times, during a menstrual cycle for instance, and then don’t show up until the next cycle begins. That being said, here are some of the symptoms an individual might experience:

  • Pain is the primary symptom which is associated with this condition and can prove to be severe and debilitating. Pelvic pain, mostly, but not always immediately before and during a period is the most common indicator dysmenorrhea or "killer cramps"). Abdominal or back pain is another symptom. About three in four women with endometriosis experience dysmenorrhea.
  • Ovulation pain
  • Dyspareunia or pain during or after sex
  • Fatigue coupled with constant weakness
  • Premenstrual syndrome (PMS)
  • Abnormal or Irregular menstrual bleeding
  • Heavy periods (menorrhagia) with or without clots & bleeding before a period is due
  • Presence of blood in the urine (particularly during periods)
  • Bowel related symptoms & problems such as bloating & bleeding from the bowel, change in bowel habits – such as diarrhoea or constipation – similar to those experienced in irritable bowel syndrome (IBS)
  • Cramping or pain during urination
  • Mood changes      such as experiencing stress, anxiety, and depression due to the severe nature of the pain
  • Nausea and vomiting
  • Vaginal discomfort          
  • A feeling of weakness, numbness or pain in the nerves (neuropathy)
  • Infertility, or not being able to get pregnant

In rare cases, certain symptoms can also include pain in the chest region or coughing out blood due to endometriosis affecting the lungs and severe headache and/or seizures due to endometriosis affecting the brain. It also needs to be mentioned that the above-mentioned symptoms need not always be related to endometriosis. However, that said, if these signs or symptoms start showing up, you should visit your healthcare professional on an immediate basis to avoid any other complications. If at all something doesn't seem quite right, it is important to seek medical attention right away. 

Causes of Endometriosis

The exact cause of endometriosis is not currently fully understood and possible associations or factors can differ from individual to individual. Here are some of the many possible factors that may have a role in causing endometriosis:

  • Problems with the menstrual period flow. Retrograde (backwards) menstrual flow is regarded to be one of the most likely causes behind endometriosis. Some of the tissue shed during the menstruation is deposited in different parts of the body through the fallopian tube into other areas of the body, such as the pelvic and abdominal cavities. That said, retrograde menstruation is likely to be not the only factor that results in endometriosis, as several women who tend to have retrograde menstruation do not go on to develop the condition.
  • Genetic factors. There is enough evidence to suggest that endometriosis can be passed on through genetics especially if a woman’s mother or sister has the condition. Studies suggest that a close family member who has endometriosis increases the chances of the woman developing endometriosis up to 7–10 times.
  • Immune system problems. Problems with the immune system or low immunity may result in the failure to find and destroy extra-uterine endometrial tissue. Thereon, it has been observed that women with endometriosis are more likely to suffer from immune system disorders and certain cancers.
  • Surgical scars: Endometrial cells can be picked up and moved inadvertently during a procedure such as a Cesarean (C-section) or hysterectomy. To that end, evidence of endometrial tissue has been found in abdominal scars.
  • Hormones: Endometriosis is promoted by the hormone estrogen. Ongoing research is investigating whether endometriosis could be as a result of a problem with the body's hormone system.
  • Fetal development: Research and studies have revealed that the presence of endometriosis can be found in a developing foetus. Pubertal oestrogen levels are understood to be the reason behind triggering the symptoms.
  • Metaplasia: Sometimes, the normal abdominal and pelvic tissue develop into endometriosis.

Other possible risk factors that may have a role in causing endometriosis are:

  • Not having children (Nulliparity) or having first pregnancy at an advanced age
  • Heavy bleeding during periods
  • Early onset of the first period
  • Uterine abnormalities
  • History of menstruation complications – shorter or longer cycles
  • High consumption of bad fats and foods high in cholesterol such as red meat
  • Low body weight
  • Excessive alcohol consumption
  • Lack of exercise

Diagnosis of Endometriosis

Endometriosis is diagnosed and treated by a team of obstetrician-gynaecologists (OB-GYNs). Endometriosis is usually diagnosed when patients come in complaining of symptoms of pelvic pain. Because symptoms can be hidden, it can take a long time to diagnose endometriosis without a formal diagnosis. On suspicion of symptoms, the doctor might order a detailed medical history along with a pelvic examination to accurately assess signs and symptoms. The pelvic exam involves looking out for large cysts or scars behind the uterus. A pelvic ultrasound (sonogram) will also be performed to check & confirm the presence of ovarian cysts from endometriosis (endometriomas). An MRI (Magnetic resonance imaging) is another imaging test that may be ordered as it can allow the doctor to get a detailed picture of the insides of the body. While all these tests can prove to be useful in identifying cysts associated with endometriosis, they are still not considered as a reliable diagnostic tool for endometriosis.

The only way endometriosis can be definitively diagnosed is with the help of laparoscopy. Performed under a general anaesthetic by a specialist gynaecologist, this procedure involves making a small incision in the abdomen and inserting a long thin tube with a tiny camera at its tip to look inside the pelvic cavity. The abdominal cavity will be inflated with carbon dioxide to improve visibility. The laparoscope will then be used to examine the pelvic region and abdominal areas for endometriosis, scarring and adhesions, or for the presence of any other abnormalities. Further, small tissue samples may be collected and studied under a microscope to confirm the diagnosis, called biopsies.

Another method is the use of certain medications including hormonal birth control pills to help with the pelvic pain or gonadotropin-releasing hormone (GnRH) agonists to help with the pain as well as in blocking the menstrual cycle and lowering the levels of oestrogen in the body. If the pain subsides with hormonal medicine, the likelihood of having endometriosis increases.

Additionally, it also needs to be mentioned that the patient has to play an active role in communicating the levels of pain experience and discussing all relevant symptoms with her doctor.


It is important to visit the health care professional when symptoms surface in order to avoid future complications. There are a bunch of complications and other health issues that can arise due to endometriosis including:

  • Chronic fatigue syndrome, inflammation, and fibromyalgia
  • Increases the likelihood of Adenomyosis
  • Severe endometriosis with extensive scarring and organ damage can affect infertility, which can affect 40 percent of those living with the condition.
  • Increases the risk of developing certain cancers such as ovarian and breast cancer or endometriosis-associated adenocarcinoma
  • Formation of ovarian cysts
  • Allergies, scar tissue, adhesion development and chemical sensitivities
  • Endometriosis can trigger several intestinal and bladder complications

Fertility and Pregnancy in Endometriosis

As stated before, endometriosis, especially if there is extensive scarring and organ damage, can cause infertility in up to 40 percent of women. As a matter of fact, it’s considered to be one of the three major reasons behind female infertility. It’s believed that inflammation arising from endometriosis can cause damage to the sperm or egg while conceiving or cause interferences in their movement while they are navigating through the fallopian tubes and uterus. Another possible explanation is that the immune system, which usually protects and safeguards the body against any disease stops doing so and instead attacks the embryo.

That said, there’s no direct evidence to link endometriosis with fertility problems and pregnancy can still be possible even in cases of severe endometriosis. Thereon, most patients with severe endometriosis are said to have experienced no problems with fertility. The only real evidence is that in the case of severe endometriosis, owing to the scar tissues and increased amount of adhesions, the likelihood of being infertile increases by several notches.

Further, while endometriosis can possibly lead to delay in pregnancy, once pregnant, pregnancy is expected to go smoothly without any complications.

However, individuals affected with endometriosis-related infertility can be treated successfully with medications and hormone treatment. In addition, getting the cysts, adhesions and any other major blockages removed via surgery are said to improve the odds of conception. Treatment to improve fertility is dependent on the age of the individual, the severity of the endometriosis while also taking other factors into consideration.


There is currently no treatment available for curing endometriosis but there are surgical and non-surgical treatment options available for managing symptoms such as pain and infertility which are related to the disease. It, therefore, needs to be reiterated that until a cure is found, only the symptoms can be treated, and not the underlying causes. Treatment for endometriosis depends on the extent or severity of the disease, symptoms exhibited, and whether the patient wishes to have children. Thereon, treatment for endometriosis entails the use of medication, surgery, or both. In the event where the pain is the primary issue, relieving symptoms through the use of analgesic (pain relieving) medications is the first suggested alternative.


For providing pain relief from endometriosis, a healthcare provider will often suggest the use of nonsteroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen (Advil, Motrin IB, others). They may prove to be sufficient to adequately relieve symptoms. In addition, several hormonal medications may be prescribed in the form of oral contraceptive pills (a combination of oestrogen and progesterone), danocrine & gonadotropin-releasing hormone (Gn-RH) agonists and antagonists to prevent ovulation and aromatase inhibitors to restrict the body’s production of oestrogen.

Surgical treatment

Surgery is usually recommended for providing relief in most people with mild or moderate endometriosis. Surgery may also be suggested to improve fertility. Surgery is performed by locating the areas affected by endometriosis and thereon, getting the endometriosis implants removed. However, surgery need not always work out to be a permanent solution as there is a high chance of pain reoccurring. Studies have revealed that nearly 40-80 percent of women have experienced pain within 2 years' post-surgery. Simply put, the more severe the endometriosis, the more the chances of it reoccurring. Therefore, the pros and cons of the surgery need to be properly analysed before opting for it. Taking medications post-surgery may help in extending the pain-free period.

As a last resort, a hysterectomy (removal of the uterus, fallopian tubes, and sometimes the ovaries) may be recommended in cases where the symptoms have revealed to have adversely affected a woman’s quality of life and where other treatment methods have been exhausted. While hysterectomy is certainly not a cure for endometriosis, it has lower retreatment rates vis-à-vis other surgical procedures. It also helps in providing pain relief.

Lifestyle changes

While there is no direct proof that leading a healthy lifestyle plays a role in reducing the severity of endometriosis, it is still important to harbour healthy lifestyle habits. For instance, avoiding caffeine can help in reducing pain, as caffeine can worsen symptoms. Regular physical activity and exercise are recommended in the treatment and management of endometriosis symptoms as it helps in decreasing the amount of oestrogen circulating through the body. Additional steps such as reducing alcohol intake – especially late at night as alcohol raises oestrogen levels, finding ways to manage the stress, having enough quality sleep every night, making healthy dietary changes, avoiding the consumption of heavy meals late at night is not only important for overall wellbeing but can also help in symptom management.

Impact of Endometriosis on Quality of Life

Symptoms from endometriosis can be challenging to diagnose. While dysmenorrhoea is the most common symptom, pain can be felt in other areas too which can hamper the quality of life. Moreover, because endometriosis is typically a progressive condition, what this means that it can worsen over time if left unchecked. Early diagnosis can not only help reduce the progression of the condition but also reduce complications, keep symptoms under check while improving overall outcomes.

In the case of certain women, post-menopause, the painful symptoms associated with endometriosis tend to subside. This is because as the body stops producing the hormone oestrogen, the growths shrink slowly. That said, in the case of some women who have opted for menopausal hormone therapy, symptoms of endometriosis may still persist.

As per recent studies, it has been pointed out that women with endometriosis have a high probability of being diagnosed with abnormal cholesterol levels and heart diseases. However, managing food habits and incorporating a healthier lifestyle should help put these fears to rest. Infertility, commonly associated as a complication arising out of endometriosis, can easily be avoided by seeking early treatment.

Some women have turned to alternative treatment such as acupuncture, homoeopathy, massage, and naturopathy to seek relief from symptoms. However, further research is needed to prove the effectiveness of these treatments.

The Bottom Line

Although there is currently no cure for endometriosis, it’s vital that you continue monitoring symptoms by opting for regular health checks with your healthcare provider. Anything abnormal or instances of intolerable pain should immediately be reported to the doctor. If any aspect of endometriosis causes worry or in case you’re worried about future implications, talk to your doctor.