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What organ causes endometriosis?

Causes

The actual cause of endometriosis is unknown. There are several theories about the cause of endometriosis, but none fully explains why endometriosis occurs.

It is possible that a combination of the following factors could be causing endometriosis to develop in some of those affected by the condition:

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 everyone who has periods experiences 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 cases after hysterectomy, or why, in rare cases, endometriosis has been discovered in some men when they have been exposed to oestrogen through drug treatments.

Some research suggests that endometriosis can be passed down to new generations through the genes of family members. Some families may be more susceptible to endometriosis but the causes of this are unclear.

Endometriosis tissue particles are thought to 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.

It is thought that in some cases the immune system is not able to fight off endometriosis. Many of those 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.

This theory suggests 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.

Metaplasia 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.

In the case of endometriosis, metaplasia would explain how the endometriosis cells appear spontaneously inside the body – and how they appear in areas such as the lung and skin. It would also explain the appearance of endometriosis cells in women with no womb – or in men who have taken hormone treatments.

During development in the womb, metaplasia allows for the development of the human body as a natural process. To explain endometriosis, some researchers believe this change from one type of cell into an endometriosis cell happens as an embryo (developing baby in the womb), when the baby’s womb (uterus) is first forming.

Other researchers believe that some adult cells retain the ability they had as an embryo to transform into endometriosis cells.

To learn more about endometriosis download our Information Pack

As a charity, Endometriosis UK relies on support from people like you. If you found this page helpful please consider making a donation. Thank you.

Endometriosis

A common condition, endometriosis is a painful condition that can impact your everyday life. When you have endometriosis, tissue similar to the lining of the uterus grows in other places within your abdomen and pelvic area. Endometriosis can cause painful and heavy periods, as well as fertility issues.

Overview

Endometriosis and an endometrioma in the female reproductive system.

What is endometriosis?

Endometriosis is a condition where tissue similar to the lining of your uterus grows on other parts of your body. When this tissue grows in the wrong places, it can cause you to experience uncomfortable symptoms that can impact your daily life. Some people with endometriosis also have issues getting pregnant.

The endometrium is the inner lining of your uterus. This tissue is what you shed during a menstrual period. Think of endometrium as layers of tissue that build up along the inside lining of your uterus. When you have a period, these layers fall away from the walls of your uterus and leave your body. If you get pregnant, the endometrium helps support the early phases of development.

When you have endometriosis, endometrial-like tissue grows on other organs or structures. This tissue can grow within your abdomen, pelvis or even chest. This tissue is hormonally sensitive and can become inflamed during your menstrual cycle. These areas of endometrial-like tissue can cause ovarian cysts, superficial lesions, deeper nodules, adhesions (tissue that connects your organs and binds them together) and scar tissue within your body.

A few places you can develop endometriosis include the:

  • Outside and back of your uterus.
  • Fallopian tubes.
  • Ovaries.
  • Vagina.
  • Peritoneum (the lining of your abdomen and pelvis).
  • Bladder and ureters.
  • Intestines.
  • Rectum.
  • Diaphragm (a muscle near the bottom of your chest that plays an important role in breathing).

How serious is endometriosis?

Endometriosis is a common condition that can interfere with your everyday life. It can cause long-term pain, disruptions to your menstrual cycle and fertility issues. The symptoms of endometriosis are often manageable with treatment.

Who can get endometriosis?

Endometriosis is a condition that most commonly impacts people between the ages of 25 and 40. It can also happen to younger people during their teenage years. Although many people find relief from endometriosis symptoms after menopause, it can still cause discomfort and pain.

What are some of the risk factors for endometriosis?

There are some factors that can place you at a higher risk of developing endometriosis. These factors can include:

  • Family history of endometriosis.
  • The age you first start having periods. People who begin menstruating before age 11 may be at a higher risk.
  • The length of your menstrual cycle (shorter time between periods) and the duration of flow (how many days of bleeding).
  • Defects in your uterus or fallopian tubes.

Is endometriosis genetic?

Although experts don’t know the exact cause of endometriosis, they do see a connection between a family history of the condition and an increased risk of developing it at some point. If another person in your family — your mother, grandmother or sister — has endometriosis, talk to your healthcare provider about your risk.

Symptoms and Causes


The most common signs of endometriosis.

What causes endometriosis?

The cause of endometriosis is unknown. When you have endometriosis, tissue similar to the lining of your uterus grows in the wrong places. When it develops in places like the outside of your uterus, fallopian tubes, ovaries, intestine and within your pelvic cavity, it can cause painful symptoms. This pain is related to increased inflammation and often fibrosis and adhesions.

When endometrial-like tissue grows outside of your uterus, it can cause scar tissue (adhesions). These sections of scar tissue can fuse your organs — creating connections between them that normally wouldn’t be there. This can lead to discomfort and pain.

What are the symptoms of endometriosis?

There are many symptoms connected with endometriosis. The main symptom is pain. This pain can be intense or mild. It can typically be felt in your abdomen, pelvic region and lower back. Although endometriosis is a common condition, not all people will experience symptoms. Sometimes, you can have endometriosis and not know until it’s found during another procedure or investigation of infertility.

People who do experience symptoms of endometriosis may have:

  • Very painful menstrual cramps.
  • Abdominal pain or back pain during your period or in between periods.
  • Pain during sex.
  • Heavy bleeding during periods or spotting (light bleeding) between periods.
  • Infertility (difficulty becoming pregnant).
  • Painful bowel movements.

There’s no connection between the symptoms of endometriosis and the severity of the condition. Some people may have very few patches of endometriosis and still experience severe pain. Other people might have severe endometriosis, but not experience a great deal of pain.

What are your first symptoms of endometriosis?

Many people experience pain during periods from endometriosis. This pain is often felt in your abdomen, lower back and pelvic area. Periods can also be heavier than typical, and there can be spotting (light bleeding) between cycles.

Diagnosis and Tests

How is endometriosis diagnosed?

In many cases, an endometriosis diagnosis will start with your symptoms. Painful and heavy periods might cause you to reach out to your healthcare provider. Once at an appointment, your provider (typically an Ob-Gyn) may start by asking you for your personal medical history, about any previous pregnancies and if any other people in your family have endometriosis. Your provider may do a pelvic exam. If your healthcare provider needs more information they’ll likely perform pelvic imaging starting with an ultrasound. Depending on your symptoms, physical exam and ultrasound results, an MRI may also be ordered for further endometriosis mapping. A laparoscopy may be offered for both definitive diagnosis and treatment. It can be a useful way to confirm endometriosis because your surgeon doing the procedure can use a small camera (laparoscope) to look inside your body. A biopsy (small tissue sample) might be taken during this procedure. The biopsy will be sent to a lab to confirm the diagnosis.

Sometimes, you find endometriosis by accident. Not all people who have endometriosis will experience symptoms. In these cases, your provider might discover the condition during a different procedure.

Management and Treatment

What is the treatment for endometriosis?

Your healthcare provider will help create your treatment plan for endometriosis based on a few factors, including:

  • The severity of your endometriosis.
  • Your plans for future pregnancies.
  • Your age.
  • The severity of your symptoms (often pain).

In many cases, your treatment plan will focus primarily on managing your pain and improving fertility issues (if you are planning on a future pregnancy). This can be done through medications and surgery.

Medications are often used to help control the symptoms of endometriosis. These can include pain medications and hormone therapies.

Hormonal options for suppressing endometriosis can include:

  • Birth control: There are multiple forms of hormonal suppression options including combination options using estrogen and progesterone or progesterone-only options. These come in multiple forms including oral birth control pills, patch, vaginal ring, birth control shot, Nexplanon implant or IUD. This hormonal treatment often helps people have lighter, less painful periods. These are not options for patients attempting pregnancy.
  • Gonadotropin-releasing hormone (GnRH) medications: This medication is actually used to stop the hormones that cause your menstrual cycle. This basically puts your reproductive system on hold as a way to relieve your pain. GnRH medications can be taken as an oral pill (by mouth), a shot or a nasal spray.
  • Danazol (Danocrine®): This is another form of hormonal medication that stops the production of the hormones that cause you to have a period. While taking this medication for endometriosis symptoms, you may have the occasional menstrual period, or they might stop entirely.

With all of these medications, it’s important to note that your symptoms can come back if you stop taking the medication. These medications aren’t recommended during pregnancy or if you are actively attempting to achieve pregnancy. Talk to your healthcare provider about the pros and cons of each medication before starting.

Medications for endometriosis pain relief can include:

  • Over-the-counter pain relief.
  • Non-steroidal anti-inflammatory drugs (NSAIDs).

In some cases, your provider might recommend surgery as a way to confirm and treat endometriosis. There are always risks to a surgical procedure. However, surgery for endometriosis can be an effective way to relieve pain and, in some cases, improve your fertility.

Endometriosis is considered a chronic disease. Many people experience relief from endometriosis pain after surgery, but the symptoms may return within a few years. The severity of your endometriosis could play a part in how quickly — if at all — it comes back after surgery. Your provider might suggest combining a surgical procedure with medications for the best outcome. Your provider may recommend pelvic floor physical therapy with or without medications for central nerve pain.

Surgical options to treat endometriosis include:

  • Laparoscopy: In this procedure, your surgeon will make a very small cut in your abdomen ( < 1 centimeter) and insert a thin tube-like tool called a laparoscope into your body. This tool can be used to see inside your body and identify endometriosis with a high-definition camera. Additional 5-millimeter instruments can then be used to excise and remove lesions.
  • Hysterectomy: In severe cases, your surgeon may suggest removing your uterus based on the amount of endometriosis and scar tissue present, if you have other uterine conditions like adenomyosis and your desire for future fertility. If you have a hysterectomy, areas of endometriosis should still be excised to optimize your pain relief.

If you have endometriosis and are trying to achieve pregnancy, in vitro fertilization (IVF) may help you achieve this goal.

Can endometriosis go away on its own?

In some cases, endometriosis can go away on its own. Over time, endometriosis lesions can occasionally get smaller, and you may have fewer of them. This can also happen after menopause, which is often related to a drop in the amount of estrogen in your body.

For many people, endometriosis needs to be continuously treated to control symptoms like pain. It’s important to maintain a regular appointment schedule with your healthcare provider so that you can work together on managing your condition long term.

What happens if endometriosis is left untreated?

Over time, the endometrial-like tissue that grows outside of your uterus can cause cysts, adhesions and scar tissue. This can cause you to experience long-term (chronic) pain — especially during menstrual periods. Many people with endometriosis may also have difficulties getting pregnant. Treatment can sometimes help with this issue.

As you age and go through menopause, the symptoms of menopause may improve. This is related to the hormonal changes your body goes through during menopause.

Endometriosis

The tissue that lines the uterus is called the endometrium. Normally, if a woman doesn’t get pregnant, this tissue is shed each month during her period. In endometriosis, tissue that looks and acts like endometrial tissue implants outside the uterus. Each month, this misplaced tissue responds to the hormonal changes of the menstrual cycle. It builds up, breaks down, and bleeds. But, the blood has nowhere to go. This causes surrounding tissue to become inflamed or swollen. It can also cause scar tissue, chronic pain, and heavy periods.

Endometriosis is a main cause of infertility in women. This can happen if the tissue implants in the ovaries or fallopian tubes. Tissue can also implant on other organs in the pelvis and in some cases, outside the pelvis.

What causes endometriosis?

The cause of endometriosis is not clear. It may be that during a woman’s period, some of the tissue backs up through the fallopian tubes into the belly. These cells can implant in the pelvis or be transported through the bloodstream or lymphatics to other parts of the body. Another theory suggests genes are to blame resulting in cells transforming into endometrial tissue. Current research is also looking at the role of the immune system.

Who is at risk for endometriosis?

Any woman may develop endometriosis, but the following women seem to be at an increased risk for the disease:

  • Women who have a mother, sister, or daughter with the disease
  • Women who gave birth for the first time after age 30
  • Women with an abnormal uterus

What are the symptoms of endometriosis?

Each woman may experience symptoms differently, but these are the most common symptoms:

  • Pain and cramps that may be felt in the belly or lower back during your period
  • Pain during sex
  • Abnormal or heavy menstrual flow
  • Infertility
  • Fatigue
  • Painful urination during your periods
  • Painful bowel movements during your periods
  • Other digestive problems, such as diarrhea, constipation, or nausea

The amount of pain a woman has isn’t always related to the severity of the disease. Some women with severe disease may have no pain. Other women with a milder form of the disease may have severe pain or other symptoms.

How is endometriosis diagnosed?

First, your healthcare provider will review your health history. You will also have a physical exam and a pelvic exam.

A laparoscopy is done to diagnose endometriosis. This uses a thin tube with a lens and a light at the end. It’s inserted into an incision in the abdominal wall to see into the pelvic area. The healthcare provider can often find the locations, extent, and size of the misplaced tissue.

Other tests may include:

  • Biopsy. For this test, a small tissue sample is removed from the body and looked at.
  • Ultrasound. This imaging test uses high-frequency sound waves to create an image of the organs.
  • CT scan. This is an imaging test that uses X-rays and a computer to make detailed images of the body. A CT scan shows details of the bones, muscles, fat, and organs. It can find problems that may not show up on an ordinary X-ray.
  • MRI. This imaging test uses a large magnet, radio waves, and a computer to make detailed images of organs or tissue.

How is endometriosis treated?

Your healthcare provider will consider your age, overall health, symptoms and other factors when advising what treatment is best for you. Whether you hope to become pregnant will also play a role in your choices.

Treatment choices include medicine, surgery, or both. If symptoms are mild, you may only need pain medicine. In other cases, hormone-based medicine, such as birth control pills, will stop ovulation and slow endometriosis.

Several choices can be used to remove the implants. Healthcare providers may be able to remove abnormal tissue growths using a laparoscope. In other cases, open surgery is needed. Surgery to remove the uterus (hysterectomy) is also a choice.

What are possible complications of endometriosis?

Endometriosis can make it very hard or impossible for a woman to get pregnant. Sometimes surgery can help. But, in a few cases, women may remain infertile.

Living with endometriosis

Simple steps that can help ease the pain of endometriosis include:

  • Rest, relaxation, and meditation
  • Warm baths
  • Prevent constipation
  • Regular exercise
  • Use of hot water bottle or heating pad on your belly

Key points about endometriosis

  • Endometriosis is common in women during the years they can have children.
  • It causes tissue that looks and acts like endometrial tissue to implant outside the uterus.
  • Treatment may include medicine, surgery, or both.
  • It can make it very hard or impossible for a woman to get pregnant.

Next steps

Tips to help you get the most from a visit to your healthcare provider:

  • Know the reason for your visit and what you want to happen.
  • Before your visit, write down questions you want answered.
  • Bring someone with you to help you ask questions and remember what your provider tells you.
  • At the visit, write down the name of a new diagnosis, and any new medicines, treatments, or tests. Also write down any new instructions your provider gives you.
  • Know why a new medicine or treatment is prescribed, and how it will help you. Also know what the side effects are.
  • Ask if your condition can be treated in other ways.
  • Know why a test or procedure is recommended and what the results could mean.
  • Know what to expect if you do not take the medicine or have the test or procedure.
  • If you have a follow-up appointment, write down the date, time, and purpose for that visit.
  • Know how you can contact your provider if you have questions.

© 2000-2022 The StayWell Company, LLC. All rights reserved. This information is not intended as a substitute for professional medical care. Always follow your healthcare professional’s instructions.

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