Endometriosis: Causes, Symptoms, Types, Treatment & Risk Factors

What is Endometriosis?

Endometriosis is a painful disorder in which the endometrium, a tissue similar to the one that normally lines the inside of the uterus, grows outside the uterus. Endometriosis normally involves the ovaries, Fallopian tubes and the tissue lining the pelvis.

Endometriosis is the implantation of inner lining of uterus outside the uterus and when it is implanted in the muscle layer of uterus, it causes adenomyosis. Most common type of endometriosis is ovarian endometriosis and it forms a cyst in ovary called as CHOCOLATE CYST. Other sites can be uterus (Adenomyosis), fallopian tubes, and pelvic peritoneum, rectum, umbilicus and many other places.

How Endometriosis does affect you?

It causes mainly painful periods and it’s a progressive disease and keeps increasing over the years. This also causes a lot of adhesions in the pelvis which may cause your uterus, ovaries and bowel stuck to each other and you may suffer from infertility. Not only pain during periods and infertility, it may also cause painful intercourse (dyspareunia), painful defecation (dyschezia), constant back pain and hampers with your daily quality of life. You may also experience fatigue, diarrhea, constipation, bloating or nausea, especially during menstrual periods.

Is pain an indicator of severe disease?

The severity of your pain isn’t necessarily a reliable indicator of the extent of the condition. Some women with mild endometriosis have intense pain, while others with advanced endometriosis may have little pain or even no pain at all.

Key pointers about endometriosis

1. It is derived from the word ‘endometrium.’ It is the tissue that lines the uterus. People suffering from endometriosis have endometrial-like tissue outside of the uterus. 
2. Endometriosis affects women between the age of 25 to 40. 
3. Women suffering from endometriosis are more likely to have infertility issues or may find it difficult to conceive.
4. Excessive menstrual cramps, abnormal or heavy menstrual cramps, and pain during intercourse are all symptoms of this condition.
5. A definitive diagnosis and treatment plan can be received with laparoscope – a minimally invasive surgical procedure.

Where Endometriosis can occur?

Endometriosis can occur in several places in a body. The most common sites include:

• The ovaries
• The fallopian tubes
• Ligaments that support the uterus (uterosacral ligaments)
• The posterior cul-de-sac which is the space between the uterus and rectum
• The anterior cul-de-sac which is the space between the uterus and the bladder
• The outer surface of the uterus
• The lining of the pelvic cavity

Endometrial tissue is occasionally found in other places, such as the intestine, rectum, bladder, vagina, cervix, vulva, and abdominal surgery scars.

What are the types of endometriosis?

Based on the location of the endometriosis, there are three main types:

1. Superficial peritoneal lesion: This is the most common kind of endometriosis. A person suffering from this condition can have lesions on the peritoneum – a thin film that lines the pelvic cavity.
2. Endometrioma (ovarian lesion): These are also known as chocolate cysts as they are dark, fluid-filled cysts. They do not respond well to treatments and can damange healthy tissues
3. Deeply infiltrating endometriosis: It grows under your peritoneum and can involve organs near the uterus such as bowels or bladder. Close to 1 to 5% of women with endometriosis have it.

What are the symptoms of endometriosis?

Women with endometriosis suffer from pelvic pain as the primary symptom. This is often associated with menstrual periods. However, many women experience cramping during their periods, those with endometriosis suffer from far worse pain than usual. Pain may also increase over time. The common signs and symptoms include:

1. Painful periods (dysmenorrhea): The pelvic pain and cramping may start before or extend after several days into a menstrual period. There is a possibility that you may also have lower back and abdominal pain.
2. Pain during sex: This is common for women with endometriosis. It causes pain during or after sex.
3. Pain with bowel movements or urination: This symptom is mostly likely to occur during a menstrual period.
4. Excessive bleeding: You may experience occasional heavy menstrual periods or bleeding between periods (intermenstrual bleeding).
5. Infertility: Sometimes, it is first diagnosed in those seeking treatment for infertility.

You may also experience fatigue, diarrhea, constipation, bloating or nausea, especially during menstrual periods.The severity of the pain may not be an indicator of the extent of the condition. Sometimes, you might have mild endometriosis with severe pain or you could have severe endometriosis with little or no pain. 

This condition is sometimes mistaken for other conditions that cause pelvic pain such as pelvic inflammatory disease (PID), ovarian cysts, and could be confused with irritable bowel syndrome (IBS) – a condition that causes bouts of diarrhea, constipation, and abdominal cramping. If you are suffering from endometriosis, you can also have IBS which complicates the diagnosis.

When to see a doctor?

Pay a visit to your doctor if you have started noticing signs and symptoms that may indicate endometriosis. This is a challenging condition and an early diagnosis, a multidisciplinary medical team, and an in-depth understanding of the condition may help in better management of the condition and symptoms.

What are the questions to ask your doctor?

Visiting the doctor for endometriosis can be daunting. Be prepared with the following set of questions to ask your doctor:

1. Why is endometriosis painful?
2. What can I do to control my endometriosis symptoms?
3. Do I need medication? How does it work?
4. What are the side effects of medication for endometriosis?
5. Will endometriosis affect my sex life?
6. How do birth control pills affect endometriosis?
7. If I’m having trouble getting pregnant, could fertility treatments help? What about surgery?
8. Can surgery stop my symptoms? 
9. What might happen if I do nothing? Can endometriosis go away without drugs or surgery? 
10. Will it last my whole life?
11. Should I consider joining a clinical trial?
12. How often do I need to see a doctor?

While you ask these questions, ensure you understand everything your doctor tells. If not, ask them to repeat the information or ask a follow-up question to clarify your doubts about the condition, treatments, and precautions.

What causes endometriosis?

The exact cause is unknown, the possible explanation includes:

1. Retrograde menstruation: Here, the menstrual blood containing endometrial cells flows back to the pelvic cavity, instead of out of the body. As a result, these cells stick to the pelvic walls and surfaces of the pelvic organs, where the cells grow and thicken and bleed over the course of each menstrual cycle.
2. Transformation of peritoneal cells: Experts believe that hormones or immune factors promote transformation of peritoneal cells – the cells that line the inner side of the abdomen – into endometrial-like cells. This is only a theory and it is called induction theory. 
3. Embryonic cell transformation: Here, the hormones such as estrogen may transform embryonic cell into endometrial-like cells implants during puberty.
4. Surgical scar implantation:  After a surgery such as hysterectomy or a c-section, endometrial cells may attach to a surgical incision.
5. Endometrial cell transport: When the blood vessels or tissue fluid (lymphatic) system may transport endometrial cells to other parts of the body is called endometrial cell transport.
6. Immune system disorder: A problem with the immune system may make the body unable to recognize and destroy endometrial-like tissue that’s growing outside the uterus.

What are the risk factors?

Usually, endometriosis develops several years after menstruation begins. If you are taking estrogen, the signs and symptoms may temporarily improve during pregnancy or completely resolve with menopause.

However, there are several factors that play a vital role in the development of  endometriosis, such as:

• Unable to give birth, forever
• Starting your period at an early age
• Onset of menopause at an older age
• Short menstrual cycles – less than 27 days
• Heavy flow during menstrual periods that lasts longer than seven days
• Increased levels of estrogen
• Low body index level
• Family history of endometriosis
• Other medical conditions prevent the passage of blood from the body during menstrual periods.
• Reproductive tract disorder.

How do doctors diagnose the condition?

Diagnosing endometriosis and other conditions that cause pelvic pain is easy when the doctor knows your symptoms, including the location of the pain and the time it occurs. There are several physical test that help doctors diagnose the condition. Some of  – them are as follows:

• Pelvic exam: Here, your doctor manually feels your pelvis for any abnormalities such as cysts on your reproductive organs or scars behind your uterus. It is important to note that it is not possible to feel small areas of endometriosis unless its caused by a cyst.
• Ultrasound: In this test, doctors use high-frequency sound waves to create images inside the body. A device called transducer captures the images when it is pressed against your abdomen or inserted inside your vagina (transvaginal ultrasound). Both these types give the best picture of the reproductive organs. However, these imaging will definitely tell the doctor if you have endometriosis or not but it can identify cysts associated with it.
• Magnetic resonance imagine (MRI): In this, the MRI machine uses magnetic field and radio waves to create detailed images of the organs and tissues inside your body. Sometimes, surgeons get detailed information about the location and the size of the endometrial implant and help in surgical planning.
• Laparoscopy: When your healthcare provider refers you to a surgeon for a laparoscopy – it allows the surgeon to view inside the abdomen. This surgical procedure is conducted under general anesthesia, while your surgeons makes a tiny incision near your navel and inserts a thin viewing instrument to look for signs of endometrial tissue outside the uterus.

A laparoscopy can provide vital information about the location, the size, and th extent of the endometrial implants. The surgeon may take the tissue sample for further testing during this procedure. With proper surgical planning, your surgeon can often fully treat endometriosis during the laparoscopy so that you need only one surgery.

What are the complications of endometriosis?

Infertility: 

This is the main complication of endometriosis. Close to one-third to one-half of women with this condition find it difficult to get pregnant. For a pregnancy to occur, an egg must be released from the ovary, travel through the fallopian tube, get fertilized by a sperm cell, and attach itself to the uterine walls to begin development. This process gets obstructed due to endometriosis and stops the egg and sperm from fertilizing. This condition may also affect fertility in different ways, such as damaging the sperm or egg. If you are experiencing mild to moderate endometriosis, you can still conceive and carry to term. Doctors advice those with endometriosis not to delay having children as this condition may continue to worsen with time.

Cancer:

People suffering from endometriosis have higher chances of getting ovarian cancer. But the overall risk of ovarian cancer is low. Although rare and relatively low, another type of cancer — endometriosis-associated adenocarcinoma — can develop later in life in those who have had endometriosis.

What are the stages of endometriosis?

There are four stages or types. They are as follows:

1. Minimal: There are small lesions or wounds and shallow endometrial implants visible on the ovaries. There may be chances of inflammation in and around the pelvic cavity.
2. Mild: This involves light lesions and shallow endometrial implants on the ovaries and the lining of the pelvic region.
3. Moderate: Here, there are deep implants on ovaries and pelvic. There is also a possibility of more lesions as well.
4. Severe: The most severe stage involves many deep implants on the ovaries and pelvic lining. There may also be lesions on the fallopian tube and bowels as well. There are chances of cysts on one or both the ovaries.

What are the treatment options for endometriosis?

Generally, the treatment for this condition involves medication or surgery. The approach is decided by you and your doctor depending upon the severity of the symptoms and if you want to get pregnant.

Typically, doctors prefer a conservative treatment approach before opting for surgery. If the initial treatment fails, then surgery is recommended. Some of the treatment options are as follows:

Pain medications:

A doctor may recommend over-the-counter medication for pain relief. These medications include nonsteroidal anti-inflammatory drugs (NSAIDs), ibuprofen, or naproxen sodium to help ease painful menstrual cramps. The healthcare provider may also recommend hormone therapy and pain relievers if you are not trying to get pregnant.

Hormone therapy:

Sometimes, supplemental hormones effectively reduce or eliminate the pain of endometriosis. During the menstrual cycle, the fluctuations in hormones enable the endometrial implants to thicken, break down, and bleed. This therapy may slow tissue growth and prevent new endometrial tissue implants. But this therapy is not a permanent fix as you could experience the symptoms returning after stopping the treatment. There are various kinds of hormone therapy, such as

Hormonal contraceptive:

Each month, birth control pill, patches, and rings help control the hormones responsible for endometrial tissue buildup. It is seen that many women have lighter and shorter menstrual flow while using the hormonal contraceptive. Continuously using the contraceptive may reduce or eliminate the pain.

Gonadotropin-releasing hormone (Gn-RH) agonists and antagonists:

These are drugs that block the production of ovarian-stimulating hormones. Thus, lowering estrogen levels and preventing menstruation, causing endometrial tissues to shrink. As these drugs create an artificial menopause, taking low doses of estrogen or progestin along with Gn-RH agnoists and antagonists may also decrease the side effects of menopause, such as hot flashes, vaginal dryness and bone loss. Menstrual periods and the ability to get pregnant return when you stop taking the medication.

Progestin therapy:

Intrauterine devices with levonorgestrel, contraceptive implant, contraceptive injection, or progestin pill, can halt the menstrual periods and the growth of endometrial tissues. Thus, relieving endometriosis signs and symptoms.

Aromatase inhibitors:

They are a class of medicine that helps reduce the production of estrogen in your body. Your doctor may recommend this inhibitor in addition to progestin or combination of hormonal contraceptive to treat endometriosis.

Conservative surgery:

As the name suggests, this surgery helps remove the endometriosis implants while preserving your uterus and ovaries and may increase your chances of becoming pregnant. People with severe pain also benefit from this surgery. However, it is important to keep in mind that endometriosis and the pain may return.

This procedure is either laparoscopically done or, sometime in more-extensive cases, a traditional abdominal surgery. Even in severe cases of endometriosis, most can be treated with laparoscopic surgery.

During laparoscopic surgery, the surgeon inserts a thin instrument called a laparoscope through a small incision near the navel to view the endometrial tissue. Later, inserts another instrument to remove the tissue through another incision. After surgery, the doctor will prescribe hormone medication to help relieve the pain.

Fertility treatment:

Endometriosis is the leading cause of infertility. If you are having trouble conceiving, then your doctor may recommend fertility treatments that is supervised by a fertility specialist.The treatments range from stimulating your ovaries to generate more eggs to in vitro fertilization. The treatment option that is right for you depends on your personal situation.

Hysterectomy with removal of the ovaries:

Removing ovaries results in menopause due to the lack of hormones. This surgery may improve endometriosis pain for some, but for other, it reains the same. It also helps treat signs and symptoms such as heavy menstrual bleeding and painful menses due to uterine cramping. 

Even when the ovaries are left in place, a hysterectomy may still have a long term health effect if done before the age of 35. Early menopause also carries a risk of heart and blood vessel diseases, certain metabolic conditions and early death.

Lifestyle and home remedies:

Finding a treatment plan that works takes time. Therefore, you can try various home remedies for your discomfort. Remedies such as warm baths and a heating pad can help relax pelvic muscles and over-the-counter nonsteroidal anti-inflammatory drugs can help alleviate painful menstrual cramps.

Alternative medicine:

There are some women who have reported to have found relief in alternative medicine such as an acupuncture treatment. However, there is little research available on the alternative treatment for endometriosis. If you are interested in such medicine, it is advisable to ask your doctor to refer you to a reputable acupuncturist.

What is the connection between endometriosis and fertility?

Endometriosis is the leading cause of infertility and affects women in the age group between 30 – 40. Close to 2 out of 5 women find it difficult to get pregnant due to this condition.

The following are some of the ways how endometriosis interferes with your reproductive organs.

• Endometrial tissue wraps around the ovaries blocking the eggs from releasing.
• The tissue also blocks the sperm from moving up the fallopian tubes.
• It can stop a fertilized egg from moving from your tubes to your uterus.

Even if the surgeon can fix these problems, endometriosis can make it hard for you to get pregnant in other ways such as:

• Changes in body’s hormonal chemistry.
• Causes the immune system to attack the embryo.
• Affects the layer of tissue lining the uterus where the egg implants itself.

Your doctor can surgically remove the endometrial tissue. This clears the way for the sperm to fertilise the egg.

If you want to get pregnant and surgery is not an option, then you might consider intrauterine insemination (IUI) that involves putting your partner’s semen directly into your uterus and in vitro fertilization (IVF).

Conclusion

Finding out that you are suffering from endometriosis is not the end. Endometriosis is a condition that is manageable with the right treatment option. Find a doctor to manage your pain, plan treatment options, and help you get pregnant. 

Frequently Asked Questions

How do I know if I have endometriosis?

One can know that they have endometriosis if they have symptoms like pain in periods, heavy bleeding, difficulty in getting pregnant or simply altered bowel habits with gaseous distension around the time of their periods. A definitive diagnosis usually requires visual inspection by laparoscopy. Ultrasonography can also pick up the disease if ovarian cysts have already developed.

Is it a hereditary problem? Does it run in the family?

Endometriosis is sometimes believed to be hereditary, being present in some members of the same family. It is quite common in Asian women including Indian women. However, most women whom we treat do not have any family members suffering from the same disease. There are some environmental factors also that may contribute to its development.

I have been diagnosed with endometriosis. Will I have difficulty getting pregnant?

30% of women who have endometriosis can have difficulty in conceiving. But difficult to say if you will particularly have difficulty as every case is different and we don’t know for sure until you try to conceive. However laparoscopic surgery increases the chance of conception by 30-40% in early-stage disease (stage 1 & 2). Another fact to understand is that pregnancy in a way also treats the endometriosis due to continuous high dose progesterone secretion that takes place during the nine months of pregnancy. Advanced reproductive technology also is helpful in women with endometriosis.

Is there a permanent cure for endometriosis?

There is no definitive cure for endometriosis, but there is treatment. Surgical treatment aims at removing all the endometriosis, which would mean removing the uterus, both ovaries and all the endometriotic implants in the pelvic cavity. Medical treatment aims at alleviating the symptoms and can provide relief to an extent. Different women may require different treatments or a combination of treatments. Surgical treatment is sometimes difficult due to the adhesive nature of the disease. Here, robotic assistance helps to complete laparoscopic removal with a negligible chance of conversion to open surgery.

Is endometriosis cancer?

No. Usually, endometriosis is a benign (non-cancerous) disease but can behave and affect areas around the uterus like cancer. Some research shows that women with endometriosis have a slightly higher risk of developing a particular type of ovarian cancer, but it is still not confirmed by hard scientific facts. There are also some reports where endometriotic ovarian cysts have become cancerous.

What happens if endometriosis is left untreated?

If endometriosis is left untreated, you can be at a greater risk of several health complications and diminish your quality of life. The following are some of the possible complications of this condition is left untreated.

• Chronic pain
• Infertility
• Ovarian cysts
• Problems with urination

If I remove my uterus…will my symptoms subside?

Surgery to remove uterus and ovaries was once considered the permanent treatment for endometriosis but now it’s clear with research that it’s no more the permanent cure. Having your ovaries removed results in menopause. The lack of hormones produced by the ovaries may improve endometriosis pain for some women, but for others, endometriosis that remains after surgery continues to cause symptoms. You must ask your gynecologist about excision surgery if you are getting operated for pain or infertility due to endometriosis. Partial clearance may not help you always.