ENDOMETRIOSIS: All You Need to Know

Endometriosis (en-doh-mee-tree-oh-sis)is a painful condition in which the tissues that make up the lining of the uterus (womb) grow outside the uterus. It most often occurs in the pelvis or the lower abdomen. In the United Kingdom, almost 2 million women are affected by endometriosis. It is known to affect females of childbearing age, irrespective of race or ethnic group.

A woman’s body experiences hormonal changes every month. These hormones are released naturally, causing the uterine lining to start preparing for a fertilised egg. And if fertilisation does not occur, the uterine lining will break down consequently leading to the monthly bleeding called menstruation.

Every month, these cells antagonise the ones in the uterus, causing a buildup of cells, their break down and bleeding. Unfortunately, this blood that accumulates from the bleeding cannot escape the body like your menstrual blood used to. It concurrently causes heavy and painful period. This chronic condition is known to cause infertility, fatigue, as well as bladder problems.

Certain myths have been circulating across the global village about endometriosis. To this end, you need to know what endometriosis is not.

  • Endometriosis is NOT an infection.
  • It is NOT Contagious.
  • It is NOT cancer.

FACTS & FIGURES ABOUT ENDOMETRIOSIS

  • The major cause of endometriosis remains unknown.
  • There is no definite cure for endometriosis.
  • 1 in every10women of reproductive age in the United Kingdom suffers from endometriosis.
  • 10%of women worldwide have endometriosis – that is about 176 million worldwide.
  • The prevalence of endometriosis in women with infertility is as high as 30–50%.
  • Endometriosis is the 2nd most common gynaecological condition in the UK.
  • On average, it takes about 5 yearsfrom the onset of symptoms of endometriosis to get a diagnosis.
  • Endometriosis costs the UK economy about £8.2bna year in treatment, healthcare costs and loss of work.

CLINICAL MANIFESTATIONS OF ENDOMETRIOSIS

The intensity of the symptoms varies in every woman that is affected by endometriosis. The clinical manifestations of endometriosis are not always equivalent to the amount of pain and discomfort affected women experience. It is, however, asymptomatic in some women.

The following are the symptoms of endometriosis:

  • Painful, heavy, and irregular periods
  • Painful sex
  • Infertility
  • Painful bowel movements
  • Generalised body weakness.

The following symptoms were also reported by affected women:

Pain symptoms

Bleeding symptoms

Bowel and bladder symptoms

Other symptoms

Painful menstrual periods

Heavy menstrual flow with or without clots

Severe painful movements in the bowel

Fatigue

Ovulation Pain

Long term bleeding

Bleeding from bowel

Depression

Pain during an internal examination

'Spotting' or bleeding in between periods

Symptoms of irritation in the bowel (diarrhoea, constipation, bloating - particularly during your period)

Severe back pain.

Pain during or after sex

Irregular periods

Pain when passing urine

Leg pain

Pain in the pelvis

Loss of 'dark blood' before the period

Pain before and after urinating or defaecation

It is important to know that the symptoms stated in the table above are likely to have other medical causes (i.e. they might not be symptoms of endometriosis). This is a major reason why you have to visit your physician for clarification through history taking and diagnostic investigations. And in case your symptoms change after a confirmed diagnosis of endometriosis has been made, you should reach out to your doctor again.

IS MENSTRUAL PAIN NORMAL?

Most women experience cramps during their menstrual period. However, if the pain becomes severe and starts interfering with your daily activities, you should ensure you visit your doctor.

On a norm, menstrual pain is caused by uterine contractions. These contractions compress the blood vessels in the muscular wall of the uterus, thereby restricting blood flow and oxygen supply to the uterus thereby causing pain and discomfort.

The case is quite different in endometriosis. The chronic pain experienced by women with endometriosis is caused by the growth of endometrial tissue outside the uterus. During the menstrual period, the uterine lining sheds and flows out as menstruation, but in endometriosis, the endometrial lining breaks down into bleeding which cannot leave the body thereby causing inflammation, chronic pain and a scar tissue formation.

There is a presence of intense period pain several days before the onset of menstruation. The periods are always painful, causing interference with daily activities. If you are experiencing this, do well to visit the hospital.

WHAT CAUSES ENDOMETRIOSIS?

The major cause of endometriosis is idiopathic (i.e. unknown). However, some factors have been recognised to contribute to its occurrence. These factors include:

  • Retrograde menstrual flow: Some of the womb lining (endometrium) flow backwards during your menstrual flow. It flows out through the uterine tube into the abdomen. It then plants and grows on a pelvic organ causing severe pain. A theory has suggested that 8 out 10 women experience retrograde menstruation; however, their bodies are capable of clearing up this endometrial tissue and ensure it does not plant itself on the abdominal and pelvic organs. It is yet to be explained the reason why endometriosis develops in women with the history of hysterectomy.
  • Genetics: Research has revealed that endometriosis can prevail in a family. It has been suggested that this condition can be passed through generations. The cause of this remains unclear.
  • Metaplasia: This is a process in which a certain type of body cells changes into another type. This is usually caused by inflammation. Metaplasia occurs in response to the inflammatory process, causing the body cells to change to the environment so as to adapt. In endometriosis, metaplasia can give us a concise explanation of how the endometrial cells appear spontaneously in the body, especially in parts like the skin and the lungs. Metaplasia will perhaps provide the most appropriate explanation to how endometriosis occurs in women who have surgically removed their wombs (hysterectomy) or in men who are on hormonal medications.
  • Malfunctioning of the immune system: Reduced immunity in some women has contributed largely to the development of endometriosis. Most often, their reduced immunity is usually caused by other medical conditions
  • Lymphatic & Circulatory Function: Endometrial tissues have been known to travel through the lymphatic system or in the bloodstream into the different parts of the body. This explains why endometrial cells have been detected in the eyes and brains of some women.
  • Environmental factors: Some toxins in the environment can affect the entire body and the reproductive system leading to endometriosis. One of such toxins is dioxin. According to a research study, animals that get exposed to high levels of dioxin eventually develop endometriosis. This theory is, however, yet to be proven in humans.

EFFECTS OF ENDOMETRIOSIS ON FERTILITY

Endometriosis is not a major cause of infertility, but it is associated with fertility issues. Natural conception can be used in the case of severe endometriosis.

The major factor that affects a woman’s fertility is her age. A female has a supply of eggs that would last her lifetime when she was born. The level of fertility declines significantly at the age of 38. This is solely due to the disappearance of egg sacs from the ovaries.

The chance to conceive naturally decrease significantly with the increase in the severity of endometriosis. This is because more scar tissues develop, causing adhesions that could trap the eggs, preventing them from moving to the fallopian tube.

Drugs have not been proven to improve fertility; however, there are quite a number of fertility treatments options for women who have endometriosis. The treatment is personalised to suit every individual’s need.

The following questions are usually asked by women who are concerned about the effects of endometriosis on their ability to conceive:

CAN ENDOMETRIOSIS AFFECT MY ABILITY TO NATURALLY GET PREGNANT?

As endometriosis becomes more severe, the scar tissues (adhesions) also increase in number, and the chance to conceive naturally will significantly reduce. Although there have been some associations between endometriosis and infertility, the major cause is yet to be established. In cases of mild to minimal endometriosis, the women sill have almost a normal chance to conceive naturally even though some became infertile for some reasons that remain unclear. On the other hand, moderate and severe endometriosis reduces the chances of normal conception. The best explanation for this is that the many adhesions caused by the endometrial tissues will trap the egg and prevent it from transporting itself into the fallopian tube.

CAN MEDICATIONS IMPROVE MY FERTILITY?

Medications have not been recorded to improve fertility in women who are suffering from endometriosis. Some surgical approaches such as the removal of cysts, nodules and adhesions have been identified to increase the chances of conception successfully. Complementary treatments help some women to conceive naturally even though no scientific evidence has been provided to back this up.

WILL ENDOMETRIOSIS NEGATIVELY AFFECT MY PREGNANCY?

If you are pregnant before having endometriosis, you should expect a nearly normal pregnancy period. Some reports have been made about women who experience intense pain in their first trimester, but the pain significantly reduces throughout pregnancy. There is, however,the tendency of experiencing chronic pain after childbirth.

ARE THERE FERTILITY TREATMENT OPTIO+NS FOR WOMEN WITH ENDOMETRIOSIS?

There are many fertility treatment options available for women who have endometriosis. Some factors are, however, put into consideration while choosing the most suitable treatment option for you. Some of these factors include the woman’s age, how long have they tried to conceive, the presence of other fertility factors. Your physician will help you decide the most suitable fertility treatment option for you.

EFFECTS OF ENDOMETRIOSIS ON THE BOWEL & BLADDER

Endometriosis can penetrate the bowel and bladder in two forms:

  • Superficial Penetration
  • Deep Penetration

When endometriosis penetrates the bowel, the following are the symptoms that manifest:

  • Dyschezia: Pain during defaecation.
  • Dyspareunia: Severe pain during sex
  • Rectal bleeding during the menstrual period.

In the case of bladder endometriosis, the following are the symptoms that occur:

  • Irritation in the bladder
  • Urinary urgency
  • Severe pain when the bladder gets full
  • Blood in the urine

Vaginal examination, ultrasound, sigmoidoscopy, laparoscopy, CT scan and MRI scan can be carried out to diagnose endometriosis of the bowel and bladder.

Medications & Surgery are usually the treatment choices for these forms of endometriosis complications.

APPROPRIATE TREATMENT FOR ENDOMETRIOSIS ON THE BLADDER

The symptoms that accompany endometriosis on the bladder can be managed by combining painkillers with hormonal treatments depending on the intensity of your symptoms. It is important to treat bladder endometriosis as the symptoms tend to worsen over time.

The surgical approach is the best treatment for bladder endometriosis, depending on the severity of your condition. The affected areas on the bladder can be vaporised with the use of a laser, or they can be buried with diathermy. They can also be excised from the organ. Expect that a urinary catheter be passed or a ureteric scent fitted during the surgery and even after the surgery.

INVESTIGATIONS FOR ENDOMETRIOSIS

The diagnosis process of endometriosis requires a reasonable time as it manifest symptoms that are similar to some common medical conditions. This makes it difficult to be diagnosed. This is a vital reason why you should provide enough information to your gynaecologist. Research has shown that an average of seven and a half years between women’s first visits to the hospital and receiving a certain diagnosis of endometriosis.

Laparoscopy is the main conclusive way to confirm endometriosis. This diagnostic procedure requires the doctor to insert a laparoscope into your pelvis through a small cut created close to the navel.

Although not conclusive, you might be required to do some scans, blood tests, as well as some internal examinations in a bid to diagnose endometriosis. A normal result does not rule out the presence of endometriosis in the body.

TREATMENT OPTIONS FOR ENDOMETRIOSIS

Once endometriosis has been diagnosed, your gynaecologist will discuss with you the possible treatment options for you. There is currently no cure for endometriosis, hence, the available treatments focus on reducing the severity of the manifesting symptoms, as well as, improve the affected woman’s quality of life.

Many factors would be considered before the most appropriate treatment regime is chosen. Some of the factors include age, the severity of the endometriosis, as well as the intensity of your symptoms.

We strongly recommend that treatment options should be tailored to suit each woman’s circumstance. The following are the available treatment options for women with endometriosis:

  • SURGERY: Surgery can be done to alleviate pain through the removal of the endometriosis or cysts. Adhesions can also be separated through surgery. These all aim at minimising pain. The following are the forms of surgery that can be carried out to treat endometriosis.
    • CONSERVATIVE SURGERY:The major aim of conservative surgery is to remove and destroy the endometriosis deposits. This can be achieved through laparoscopy. The procedure requires the surgeon to either destroy the endometriosis with laser or excise (cut out) the endometriosis.
    • COMPLEX SURGERY: A more complex surgery is required if the endometriosis is severe, especially if it has affected the bowel and bladder. As its name implies, complex surgery requires a multi-disciplinary team.
    • RADICAL SURGERY: This is considered when a woman is not responsive to medications and conservative surgery. Hysterectomy (total removal of the womb)or oophorectomy (removal of the ovaries) is usually done in this case.
  • HORMONAL TREATMENTS: These can be given to block and minimise the production of oestrogen in the body. This is solely because the development of endometriosis has been linked to the increased level of oestrogen. Hormonal treatments for endometriosis put the affected woman in anartificial state of pregnancy or an artificial state of menopause. Unfortunately, these hormonal medications do not affect the adhesions caused by the condition. The hormonal medications that are available for endometriosis treatment include:
    • Progestogens
    • GnRH Analogues
    • Combined Oral Contraceptive pill
    • Mirena coil
    • Gestrinone
    • Danazol
  • PAIN RELIEF TREATMENTS: These are aimed at relieving pelvic pain, which is the major symptom of endometriosis. The following are the pain management options available for women with endometriosis:
    • Pain Killers
    • Heat and comfort
    • Physiotherapy
    • Transcutaneous Electrical Nerve Stimulator (TENS)
    • Pain modifiers

IMPACT OF ENDOMETRIOSIS ON COUPLES

Endometriosis significantly affects the quality of life of women, as well as their partners and relatives. The quality of life of couples is usually negatively affected by endometriosis in a complex manner.

  • Daily Activities: Endometriosis affects the day-to-day life of the couples; causing extra strains on them. It causes emotional strain, financial strain, as well as physical strain on the women and their family members.
  • Health Status &Treatment: Couples may get frustrated at the reality of seeking effective treatment.
  • Sex & Intimacy: The accompanying symptoms of endometriosis, such as pain during sex, bleeding, generalised body weakness, fatigue, low libido, among others, can negatively affect the couples’ sexual life.
  • Emotional Surge: Women with endometriosis often experience fluctuations of emotions. They may experience a wide range of guilt, frustration, irritability, helplessness and low mood. The couples should be supportive throughout the challenging period.

FREQUENTLY ASKED QUESTIONS (FAQs) ON ENDOMETRIOSIS

Daily, we receive several emails and phone calls from women with endometriosis and their loved ones asking for detailed information about endometriosis. To this effect, we have compiled the most appropriate answers to the frequently asked questions we received from these women.

We honestly hope you find this information helpful in making informed decisions. We, however, strongly point out that the information on this page does not replace medical advice from your healthcare providers. Ensure you continually talk to your health provider if you have any worries about endometriosis.

You can also submit a question that is troubling your mind to our Medical Advisory Panel through our Question and Answer Service.

We categorise the questions into five: General, pain management, fertility & sex, support and treatment. The following are the frequently asked questions on endometriosis:

GENERAL FAQs

  • What is Endometriosis?

Endometriosis (en-doh-mee-tree-oh-sis)is a painful condition in which the tissues that make up the lining of the uterus (womb) grow outside the uterus. It most often occurs in the pelvis or the lower abdomen. In the United Kingdom, almost 2 million women are affected by endometriosis. It is known to affect females of childbearing age, irrespective of race or ethnic group.

A woman’s body experiences hormonal changes every month. These hormones are released naturally, causing the uterine lining to start preparing for a fertilised egg. And if fertilisation does not occur, the uterine lining will break down consequently leading to the monthly bleeding called menstruation.

Every month, these cells antagonise the ones in the uterus, causing a buildup of cells, their break down and bleeding. Unfortunately, this blood that accumulates from the bleeding cannot escape the body like your menstrual blood used to. It concurrently causes heavy and painful period. This chronic condition is known to cause infertility, fatigue, as well as bladder problems.

  • How Did I Develop Endometriosis?

The major cause of endometriosis is idiopathic (i.e. unknown).  Don’t blame yourself; you did not have endometriosis because of what you’ve previously done. However, some factors have been recognised to contribute to its occurrence. These factors include retrograde menstruation, genetics influence, environment, metaplasia and some other factors.

  • Can Endometriosis turn Into Cancer?

Endometriosis is NOT a form of cancer; it is not contagious, and it is not an infection. Based on the fact that a benign tissue is potentially able to turn into cancer, the deposits of endometrial tissues could turn into cancer. This is however in rare cases

  • Can Endometriosis be prevented?

Yes, it can be managed! There is no acclaimed way of preventing endometriosis; however, the symptoms and the condition as a whole can be properly managed. The most appropriate treatment will be decided by the healthcare professionals in collaboration with the woman. The following factors need to be put into consideration when choosing the best treatment options for endometriosis:

  • Her age
  • The individual circumstances of the woman.
  • The desire to have children
  • The severity of her symptoms
  • The severity of the disease
  • Can Dioxins Make Endometriosis Worse?

Dioxins are chemicals released into our atmosphere from the manufacturing activities of humans and the burning of items like plastics and papers. Some toxins in the environment can affect the entire body and the reproductive system leading to endometriosis. One of such toxins is dioxin. According to a certain research study, animals that get exposed to high levels of dioxin eventually develop endometriosis. This theory is, however, yet to be proven in humans.

  • Can Women’s Health Care Partners Recommend a Specialist, surgeon or treatment centre for women with endometriosis?

We won’t be able to recommend specialists, surgeons or treatment centres for some legal reasons. We strongly recommend that affected women seek for institutions that have been reviewed by others to have excellent practices. A good place to begin the search is the British Society for Gynaecological Endoscopy (BSGE) website. The British Society for Gynaecological Endoscopy has accredited specialist endometriosis centresthat have consultants who are specialists in the field of endometriosis. Thecentres are annually reviewed.

  • Can I Get a Second Opinion?

If you are not comfortable or in agreement with the advice offered by your healthcare provider, you can request a second opinion. You will be referred to another consultant to get a second opinion. Before you request a second opinion, it is necessary to consider whether this is due to ineffective communication. If you do not understand an explanation that has been given to you, you should ask your doctor to explain it to you again.

Your doctor will be able to advise you on getting a second opinion from another consultant. If you wish to see a different General Practitioner, you can fix an appointment with another GP in that practice, or you could change practices instead. NHS Direct can be very helpful in this situation.

FAQs on Pain Management

  • How Long Will I feel Soreness/Pain after My Laparoscopy?

The feeling after laparoscopy is personalised. Some people may feel better after one or two days; others may take a week or two to get over the effects of the anaesthesia. If you have had received surgical treatment at the same time as laparoscopy, your recovery time will be longer. The complexity of surgery would also affect how long you would feel pain after an operation. Contact your GP or visit the hospital if you are concerned about how you feel.

  • How Can I Use NSAIDs Correctly For Endometriosis Pain?

NSAIDs, for example, Ibuprofen, Ponstan (Mefenamic Acid), and Voltarol (Diclofenac)are mitigating drugs that can diminish the pain– yet they don't work similarly as ordinary painkillers, for example, paracetamol. They work by diminishing the frequency of the pain-causing synthetic chemicals (prostaglandins) in the body. For them to be compelling, they should be taken before the prostaglandins are delivered. For example, your primary care physician may request that you begin taking them a couple of days BEFORE your period is expected. Even though you may not be experiencingpain at that point, they will stop or diminish the effect of the prostaglandins – so the pain ought to be decreased when your period starts.

  • How can I find out about self-management courses for endometriosis?

Self-management courses (Expert Patient Programme) allow people living with long term conditions to manage their symptoms. They usually run through 6 weeks for people living with chronic conditions. They have a proven track record of positively affecting those living with a long term illness. Hence, they should not be under-estimated. The courses are, of course, free of charge. Your local Primary Care Trust will be able to provide adequate information on these courses.

  • Do I Need to Take Anti-Depressants For My Endometriosis Pain?

Neurotransmitters (which are chemicals in the body) help to transmit messages to the brain. The messages sent are stimuli; they are pain, pleasure, anxiety, panic, arousal, and sleep. Even though anti-depressants treat depression, they also help block neurotransmitters from transmitting pain stimuli into the brain. These anti-depressants are prescribed for the management of chronic pain like the one experienced in endometriosis.Although they are effective, they do not work for everyone.

WHERE TO SEEK FOR SUPPORT AND ADVICE

Women’s Health Care provides professional support services and reliable information to those that are affected by endometriosis.  You can look through our official website for more information www.womenshealthcarepartners.org or walk into our office at Harley Street, London to speak with a Gynaecologist.