Understanding Endometriosis: Symptoms, Causes, and Treatment Options

Endometriosis is a chronic condition that occurs when tissue similar to the lining of the uterus (known as the endometrium) grows outside the uterus. The tissue that grows outside of the uterus (known as lesions) typically appears on or near your reproductive organs but can grow anywhere, including your bladder and colon. It can cause severe pain in the pelvis and make it harder to get pregnant. These lesions bleed every month when a woman has her period with the fluctuation of hormones, just as the lining of the womb sheds, and when they bleed, they can implant and spread to another location. With endometriosis, displaced endometrial tissue continues to act as it normally would — it thickens, breaks down, and bleeds with each menstrual cycle. Because this displaced tissue has no way to exit your body, it becomes trapped. When endometriosis involves the ovaries, cysts called endometriomas may form. Surrounding tissue can become irritated, eventually developing scar tissue and adhesions — abnormal bands of fibrous tissue that can cause pelvic tissues and organs to stick to each other”

It is neither a condition of the uterus or a growth of the endometrial tissue. But rather a disease characterized by the presence of an endometrial-like tissue in the presence of the extra-uterine environment(key word being endometrial-like). While these lesions look like the native endometrium they are not identical.

No, endometriosis is not just painful periods once a month. It’s a full-body, full-time inflammatory disease that can be life-sucking and completely debilitating.

Although knowledge of the etiology, pathophysiology, and pathogenesis is poorly understood and highly debated research shows that this disease has a multifactorial origin.

Endometriosis can cause systemic and chronic pain that is not confined to menses nor impacts only the reproductive system. It has been documented in every part of the body with a few exceptions.

Can men suffer from endometriosis?

Anyone can have endometriosis,” However, cisgender women and other people assigned female at birth (are much more likely to develop endometriosis than cisgender men and other people assigned male at birth.

For reference, endometriosis affects roughly 190 million reproductive-age women and girls worldwide. There are less than 20 documented cases of endometriosis in boys or men. There’s very little research on endometriosis. There’s even less research on endometriosis in cisgender men. The most recent research on the topic was published in 2018. At the time, only 16 cisgender men had ever been diagnosed with the condition. Endometriosis is a chronic and life-lasting condition. There are ways to treat the symptoms of endometriosis, with hormones and/or surgery or both. However, there is no cure for it and even after specialist excision surgery, there is still a risk of it coming back at a later stage. Endometriosis affects 10% of the female population.

Could I have endometriosis?

The symptoms of endometriosis can begin at any age, including early adolescence, or later in adulthood. Endometriosis symptoms may be cyclical, meaning, that symptoms come and go around the same time each menstrual cycle. They often occur around the same time as menstruation. Every woman experiences it differently.

This was a woman suffering from endometriosis POV when asked to describe her pain; Regular” endo pain – In a “regular” endometriosis flare, I experience stabbing pain, worse than my typical period cramps were. On the worst days, I can barely get out of bed, and if I can, I can’t stand up straight from the pain. On the bad days, I need to take medication to not be in so much pain I have to stay in bed. On the better days, I can go about my day, but I’m constantly aware of my pain. Just because you can do things while living with high pelvic pain – which is what my better endo-pain days are – doesn’t mean that you don’t have endometriosis, so don’t take this as an indicator that you don’t.

Endometriosis symptoms may start around the same time as the first period, leading a woman to get used to the pain and think that a high level of pain is “normal” for her.

Endometriosis can be a difficult condition to diagnose early because many people don’t have symptoms, and because confirming a diagnosis requires a surgical procedure.

Signs and symptoms of endometriosis present as below

Gnawing or throbbing feeling that can be severe. or throbbing feeling that can be severe.

• Painful periods (dysmenorrhea). If your period has always been so painful that you struggle to do things on even one day, talk to your doctor about endometriosis. If it’s so bad that you regularly have to take a day off of work, 100% talk to your doctor and keep pressing them if they shake it off. Endometriosis can do real damage to your body, and you deserve a medical team that will help you do something about it.

• Pelvic pain (also known as persistent pelvic pain ) along with painful periods are the commonest signs

• Lower back and abdominal pain.

• Pain with and after intercourse.(Many women with endometriosis feel pain while having sex or for up to 2 days later. For some, it feels stabbing or sharp. Others describe it as an ache in the pelvic area)

• Pain with bowel movements or urination.

• Excessive, heavy bleeding.

• In some cases, it causes infertility.

• Fatigue, diarrhea, constipation, bloating

• Nerve and muscular pain can be felt in the legs, lower and upper back, pelvic pain, and some women even complain of shoulder pain. The most common symptoms are the following:

• Backache and pelvic pain are common because your uterus and ovaries are near your back.

• Leg pain, because endometriosis can affect nerves that connect to your groin, hips, and legs. This can make it hard to walk, and you may have to rest often or even limp.

• Problems with digestion including nausea, reflux, diarrhea, and constipation

• Painful bowel movements. This one depends on the areas affected by my deep infiltrating endometriosis; it might hurt to go to the bathroom. If it’s severe, it might also cause bleeding.

Just a note, these are also all symptoms of a condition called adenomyosis which is closely linked with endometriosis in that endometriotic lesions grow within the muscle wall of the uterus. Some women are diagnosed with either endometriosis or adenomyosis or both.

How do we classify endometriosis?

There is a system of classification or staging of endometriosis. This is useful to better describe the disease, which helps develop better diagnoses and treatments.

Because endometriosis can appear in many different forms, and varieties, and the extension of organs affected, a unified consensus classification system for the stages of the disease is not a simple task. The most used and best-known system is the American Society for Reproductive Medicine (ASRM). The ASRM classification system divides endometriosis into four stages (or four grades) based on the number of lesions and depth of infiltration.

Endometriosis is classified into four stages (I-minimal, II-mild, III-moderate, and IV-severe).

Endometriosis classification depends on the location, extent, and depth of lesions. Additionally, it’s classified by presence, severity, and size of adhesions and ovarian endometriomas.

The ASRM classification uses a point system to try to quantify endometriosis lesions. A score of 15 or less indicates minimal or mild endometriosis. A score of 16 or higher indicates moderate or severe endometriosis. However, the score (severity) of endometriosis does not always correlate with the level of pain that you experience.

This is why experts group endometriosis by stage and type. It is based on many different things, including the location, depth, size, and even the amount of tissue is present. What kind of endometriosis you have will play a big role in the future, including what kind of symptoms and treatment you will have. Doctors usually assign points according to how much the endometrial tissue spreads. They take into account its depth and the areas of your body that are affected.

Stage 1 – minimal – where there are a few small wounds or lesions, which may be found on your organs, the tissue lining your pelvis, or even your abdomen, but there’s little to no scar tissue.

Stage 2 – mild – where there are more implants than in the first stage. Additionally. they are deeper and may create some scar tissue.

Stage 3 – moderate – this stage has many deep implants. You may additionally have small cysts on either – one or two ovaries, and even thick scars called “adhesions”.

Stage 4 – severe – as the name suggests, is the most severe stage which is widespread. You have many deep and thick adhesions and there will also be large cysts on one or both ovaries.

What are the types of endometriosis?

Endometriosis doesn’t always go from one stage to the next. If left untreated, it can remain the same over time. Or it may get worse or better. This is why, aside from stages, endometriosis is grouped by what area of the pelvis (or abdomen) it affects.

There are also four main types:

Superficial peritoneal endometriosis is the first type, in which a thin membrane, called “peritoneum”, lines your abdomen and pelvis, and covers most of your organs in these cavities. In this type, the endometrial tissue attaches to the peritoneum, which is the least severe form of endometriosis.

Endometriomas. These are dark color cysts, fluid-filled, also called “chocolate cysts” because of the way they look. They vary in size and may appear in different parts of your pelvis or/and abdomen. However, they are most common in the ovaries.

Deep infiltrating endometriosis (DIE). The endometrial tissue in this type invades your organs, either, within or outside your pelvic cavity. This may include your ovaries, rectum, bladder, and even your bowel. It’s rare, but sometimes a lot of scar tissue can bind organs together in such a way, that they become stuck in place.

This condition is called “the frozen pelvis”, and only happens to 1%-5% of people with endometriosis.

Abdominal wall endometriosis. In some cases, endometrial tissue can grow on the abdominal wall. The cells may attach to a surgical incision, like one from a C-section, as it stated in this source.

Where can endometriosis spread in the body?

As you already know, endometriosis grows, it’s a progressive disease, and it spreads just like Cancer, “endometriosis has been found in every single organ in the body. The symptoms range from abdominal pain to brain fog and fatigue, to chest pain and shortness of breath, to nerve pain and pain with urinating”.

It can be very serious!

Most people with this condition will have it in their pelvis, but researchers have found that around 12% have it outside the pelvis. Endometriosis complications may include:

• Fertility problems, ectopic pregnancy.

• Organs obstructions or/and damage.

• Bladder and bowel problems.

• Adhesions and ovarian cysts.

• Surgery complications and infections.

• Loss of blood, severe anemia.

Additionally, there are other complications such as the development of other chronic conditions.

Diaphragmatic endometriosis can be also found, but it’s common not to feel any symptoms at all with this kind of endometriosis. Its symptoms can include pain in your:

• Chest.

• Upper abdomen.

• Right abdomen side.

• Shoulder.

• Lower ribs.

• Pain when you breathe.

• Nausea or vomiting.

What is rarely spoken of is endometriosis which spreads to the brain. Cerebral endometriosis is the growth of endometrial tissue in the brain. Cerebral endometriosis is extremely rare, where the endometrial cells are found in the back part of the brain known as the cerebellum.

How can I get diagnosed with endometriosis?

How do you know if you have endometriosis – by diagnosing it? But it can be difficult because women experience the common symptoms of endometriosis, a large proportion of them have atypical or no symptoms at all, making it difficult for doctors to suspect endometriosis, which delays its diagnosis.

The diagnosis often takes 7 to 10 years. There’s a combination of factors that delay the diagnosis. A lack of awareness about endometriosis by is the most common. Modern medicine knows next to nothing about endometriosis. We have the patriarchy and Freud’s blanket hysteria diagnoses to thank for that, but it is what it is.

Secondly, there is a “normalization” of period pain, as if it was “a part of being a woman”.

Lastly, a lack of easy and precise methods of diagnosis.

Early detection of endometriosis is important as it has the potential to reduce the long-term impact on women’s and their partner’s life, improving its quality, better management, and prevention of infertility.

The only way to truly diagnose endometriosis is by a surgery called “laparoscopy”.

Unfortunately, by the time doctors diagnose your endometriosis, it is often a late stage of it. Remember, that it takes many years to diagnose it because of different factors.

Your doctor can only see endometriosis by laparoscopy, but again, before they order your surgery, various doctors will do other tests to rule out other conditions. They’ll do a pelvic exam to feel for a cyst, and they may order an ultrasound or MRI to look for an endometrioma,

Treatment and management of endometriosis

Pain-relief medicines

Your doctor may recommend pain-relief medicines, such as paracetamol and non-steroidal anti-inflammatory drugs (e.g. ibuprofen) for temporary relief.

Hormone therapy

Hormone medicines for endometriosis include combined contraceptives, progestogens, and Gonadotrophin-releasing hormone analogues (GnRHa). Hormone therapy may reduce the pain and severity of endometriosis by suppressing the growth of endometrial cells and stopping any bleeding. But symptoms can return if you stop the treatment. It isn’t suitable for women who want to get pregnant, and most treatments have side effects.

Combined contraceptives

The combined oral contraceptive pill (COCP) is taken continuously by skipping the sugar (hormone-free) pills. Works by suppressing the growth of endometrial cells and stopping any bleeding. You don’t need to be sexually active to take the pill. Read up on the side effects to make an informed decision.

Your doctor may recommend you don’t take the pill if you:

• smoke

• are over the age of 35 and have risk factors for heart or cardiovascular disease

• have high blood pressure

• have recently had breast cancer, deep vein thrombosis, heart attack or stroke

• have liver disease

• have a family history of blood clots.

Progestogens

Progestogens (natural and synthetic forms) provide pain relief for many women with endometriosis. We don’t know exactly how progestogens relieve the symptoms of endometriosis. They may suppress the growth of the endometrial tissue, causing it to gradually shrink and disappear.

You can take progestogens as a daily pill, or you may choose a long-acting option such as an injection or IUD (intrauterine device).

Gonadotrophin-releasing hormone analogues (GnRHa)

GnRHa treatment is usually used for moderate to severe endometriosis. The GnRHa agonists stop ovulation, which results in reduced estrogen hormone levels. This suppresses the growth of the endometrial tissue, causing it to gradually shrink and disappear.

GnRHa treatment creates a temporary chemical menopause and there may be associated side effects. eg.

• hot flushes and night sweats

• vaginal dryness

• mood changes

• depression

• acne

• muscle pains

• smaller breasts.

GnRHa may also decrease bone density, but this can be completely reversed within 12 months of completing treatment. This side effect may increase your risk of osteoporosis. Talk to your doctor about having a bone density scan (DXA) before treatment. You can also have estrogen therapy after treatment to alleviate menopause symptoms and stop bone loss.

Menopausal Hormone Therapy

Endometriosis usually goes away after menopause. While uncommon, it can return with the use of menopausal hormone therapy (MHT), especially if there is no progestogen component.

During the menopause transition, women with endometriosis are often advised to have combined MHT, even if they no longer have a uterus. This is because therapy with oestrogen alone may increase the risk of endometriosis symptoms returning, or cancer.

Non-hormone treatment

Some anti-depressant medicines are used to treat endometriosis. These medicines affect the central nervous system’s response to pain. However there is limited research to show this is an effective treatment for endometriosis.

Non-drug treatment

There are different non-drug options for treating endometriosis, such as pelvic floor physiotherapy, psychology (specifically cognitive behavioral therapy), and diet, but few studies have evaluated the benefits.

Surgery

Most surgery for endometriosis is performed via keyhole surgery (laparoscopy).

The first operation offers the best chance of removing the endometrial tissue, minimizing the development of adhesions, and improving long-term outcomes.

If endometriosis is in the bowel or bladder, other specialists (e.g. a urologist or colorectal surgeon) may be involved in the procedure.

Many studies have shown that surgery improves symptoms and overall quality of life for women with endometriosis.

Make sure you understand the potential benefits and risks of each option before you make a decision.

Hysterectomy

A hysterectomy (removal of the uterus), and sometimes removal of the ovaries and tubes, may be performed in extreme cases. This surgery is usually performed when women have severe pain and have tried all other options to improve their symptoms. It should only be recommended to women who do not want to get pregnant in the future.

Most of the hysterectomies performed remove both fallopian tubes but leave the ovaries behind. This helps to prevent surgical menopause. If you experience symptoms of menopause after your operation, you can ask your doctor for a referral to a specialist clinic for early menopause management. One type of menopausal hormone therapy called Tibolone may be suitable, as it does not stimulate endometrial cells in the same way standard MHT does.

Combined treatments

Surgery by laparoscopy is an effective way to treat endometriosis. But a combination of surgery and hormone therapy can improve outcomes.

Hormone therapy is sometimes used before surgery to shrink the endometriosis, and again after surgery.

Studies have shown there is a delay in endometriosis recurring if surgery is followed by treatment with GnRHa agonists, the pill or the Mirena® intrauterine device (IUD).

Conclusion

Endometriosis is a disorder with a very late diagnosis rate. It cannot be cured and is highly disabling not only for the women who suffer from endometriosis but also for those who support them. The costs associated with its treatment are significant. The delay in the diagnosis of endometriosis has consequences on the quality of your life, including social, personal, and working life.

The struggle that women go through trying to get a diagnosis for this condition often results in them suffering mental health problems. We are also trying to bring awareness to people regarding this awful condition in the hope that more research can be done for a cure.

If you think you experience any of the symptoms in the article about seeking a doctor, the earlier you are diagnosed, the better chances you stand....

Written by Ahumuza M. Nyakato

Medical Student

Kampala International University (KIU)