Endometriosis

Endometriosis is a condition where cells similar to those that line the uterus (the endometrium) are found in other parts of the body. It is suggested that 1 in 10 women of reproductive age are affected. We’re not sure what causes endometriosis but there are suggestions that:

  • Family history can contribute. Women with a close relative with the condition are 7-10 times more likely to get endometriosis. It is also more common in twins, particularly if they are identical.
  • Retrograde menstruation. When a woman has a period, the blood flows out of the vagina, but also backwards along the fallopian tubes into the pelvis. In 90% of women, the blood, which will contain endometrial cells is absorbed or broken down and causes no symptoms; however, in women with endometriosis this endometrial tissue starts to grow.
  • Metaplasia: the conversion of the normal pelvic tissue into endometriosis.

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

  • having first pregnancy at an older age
  • heavy bleeding during periods and periods lasting longer than five days
  • first period before 11 years of age
  • regularly having less than 27 days between periods, or having shorter regular cycles
  • changes in the immune cells
  • low body weight
  • alcohol use

What happens?

The endometrial cells:

  • are found on organs in the pelvis
  • may start to grow and form patches or nodules on pelvic organs or on the peritoneum (the inside lining of the abdomen and pelvis, see image)
  • have the same cyclical/menstrual changes outside the uterus as inside the uterus
  • may bleed at the same time as your period (menstruation)

Factors that may lower the risk of getting endometriosis are:

  • how many children you have – the chance of getting endometriosis may lower with each pregnancy (this may be related to the hormone progesterone during pregnancy)
  • younger age of first pregnancy
  • breastfeeding for a longer period
  • regular exercise of more than four hours per week (this may also help with pelvic pain for endometriosis)

There may be different forms or types of endometriosis

  • Superficial peritoneal patches (surface lining patches or plaques)
  • Deep infiltrating endometriosis, in which endometriosis causes scarring and nodules which can grow into nearby organs, such as the bladder, bowel and ovary. In the ovary it causes a ‘chocolate cyst’ or endometrioma
  • Adenomyosis, whereby the endometrial cells grow inside the muscle of the uterus
  • Outside the pelvis – this is rare
  • Upper abdomen eg, on the diaphragm
  • In the liver, nose, eye
  • Abdominal wall, often associated with previous operation scarring
  • Adolescent endometriosis, which may have different causes

How do you know if you have endometriosis?

The symptoms vary from woman to woman. Some women have many symptoms and severe pain, whereas others have no symptoms. About a third of women with endometriosis discover they have it because they have not been able to become pregnant, or because endometriosis is found during an operation for another reason. The type of symptoms and their severity are likely to be related to the location of the endometrial tissue rather than the amount of endometrial cells growing. About three out of four women with endometriosis have pelvic pain and/or painful periods. In the early stages of the disease, one or two mild symptoms may be felt for the first day or two of a period. Later, as the condition continues, symptoms may get worse for more days of the month, both during and before the period. In women over the age of 25, endometriosis can make it difficult to get pregnant. This may be because the endometrial cells release chemicals that cause inflammation that:

  • interfere with the ability to get pregnant
  • affect the development of the embryo in its early stages

In moderate to severe cases, the scarring caused by the endometrial cells may interfere with the release of an egg (ovulation), due to damage or blockage. The damage can also prevent the journey of an egg along the fallopian tube and/or the sperm from reaching the egg, causing problems with fertility.

Symptoms you may experience

Pain is a key symptom of this condition and is not related to how severe the disease is, but to the location of endometrial tissue.

Pain
  • Pain immediately before and during a period
  • Pain during or after sex
  • Abdominal, back and/or pelvic pain
  • Pain on going to the toilet, passing urine, opening bowels
  • Ovulation pain, including pain in the thigh or leg (this can also happen normally in some women)
Bleeding
  • Heavy bleeding, with or without clots
  • Irregular bleeding, with or without a regular cycle
  • Bleeding longer than normal
  • Bleeding before a period is due
Bladder and bowel problems
  • Bleeding from the bladder or bowel
  • Change in pattern of bowel habit, such as constipation, diarrhoea
  • The need to urinate more frequently or some other change from the normal habit
Bloating Increase abdominal bloating, with or without pain at the time of the period
Tiredness Tiredness or lack of energy, especially around the time of the period
Mood changes Anxiety and depression due to ongoing pain
Reduced quality of life Taking days off work, study or school because of an inability to function normally
 Vagina Pelvic floor muscle spasm or tightening occuring because of fear of pain previously experienced with intercourse or tampon use

Symptoms during pregnancy

In many cases, the symptoms of endometriosis appear to go away with pregnancy. This is thought to be because pregnancy hormones cause the endometriosis to reduce. After the baby is born the effects of endometriosis are unclear. In a small study of 23 women, the endometrial lesions worsened in the first three months of pregnancy, but improved as the pregnancy continued. Complications of endometriosis during pregnancy are rare.

Symptoms during menopause

Usually, endometriosis does go away after menopause. It may return with the use of hormone replacement therapy (HRT), but this is rare. Even more rarely, it can return for no reason.

When to get help

Get help when period pain is stopping normal daily activities. For example:

  • missing work, school or recreational activities
  • when medicines used for period pain don’t help reduce the pain
  • when you need to stay in bed due to pain
  • when symptoms are getting worse
  • when you feel upset by your symptoms
  • when your ability to cope mentally decreases

Management & treatment

There are many options to manage and treat endometriosis including a healthy lifestyle, pain-relief medications, hormone therapy such as the oral contraceptive pill and progestins. Different types of surgery including laparoscopy, laparotomy and hysterectomy are also discussed.
It is not OK to have severe period pain. If the pain is so severe that you are missing school, work and other activities, you should get help. If you suspect you have endometriosis, see your GP at GS Health who can examine and investigate you, and if necessary refer you to a specialist gynaecologist. Many women with endometriosis are cared for by a team of health professionals including their doctor, a gynaecologist who specialises in the area, a psychologist, medical sex therapist, pain specialist, colorectal surgeon and urologist. The right treatment for you will depend on your symptoms, the severity of the condition and whether you are trying to become pregnant or maintain your ability to have children.

Managing endometriosis with a healthy lifestyle

There is no direct evidence that lifestyle reduces the severity of endometriosis, however, it is important to strive to be as healthy as possible.

HOW IT HELPS WHAT YOU CAN DO
Physical activity and exercise Some gentle activity to keep your body moving can help to ease pain About 20-30 minutes of physical exercise on most days of the week is recommended unless you have not exercised recently. If that is the case then you should begin with smaller amounts and gradually build up as your fitness improves
Sleep Having enough quality sleep every night will help your immune system function at its best
  • Reduce caffeine and alcohol intake late at night
  • Avoid heavy meals late at night
  • Maintain regular timing for going to bed and waking
Stress management and relaxation Finding ways to manage the stress that endometriosis can create is important for your wellbeing
  • Try gentle yoga techniques
  • Relaxation skills such as mindfulness therapy
  • Organise your day so you always have some time out for yourself
  • Seek help from a psychologist or counsellor

Managing endometriosis with pain relief medicines

Managing the pain from endometriosis usually involves:

  • medication for pain relief such as anti-inflammatory drugs
  • hormone therapy such as the contraceptive pill (you do not have to be sexually active to take this)

Managing endometriosis with hormone therapy

Hormone therapies may be used as a treatment for mild endometriosis or as a combined therapy, either before, or after surgery, for moderate to severe endometriosis. Hormonal therapies aim to reduce pain and the severity of the endometriosis by:

  • suppressing the growth of endometrial cells
  • stopping any bleeding, including the period

Hormone therapies include:

Oral contraceptive pill (OCP)
Oral contraceptive pill (OCP) is taken continuously, by skipping the sugar (hormone-free) pills. Better pain relief and cessation of periods occurs with the continuous pill. You do not have to be sexually active to take the OCP. The pill is taken to:

  • stop your period, or reduce the number of periods you have in a year
  • suppress endometriosis
  • provide long-term relief from period pain that is not helped with non-steroidal anti-inflammatory drugs (NSAIDs)

The pill may slow the progression of endometriosis.

Possible side effects include:

  • irregular bleeding
  • nausea
  • abdominal bloating
  • breast tenderness
  • weight gain
  • mood changes/depression
  • headache

More serious risks of the pill, such as blood clots (thrombosis), are rare. If you experience chest pain, severe headaches, severe pain or swelling of your leg, you should see your doctor immediately.

You should not take the pill if you:

  • smoke and/or are over 35 with risk factors for heart disease or cardiovascular disease
  • have high blood pressure
  • had recent breast cancer, deep vein thrombosis, heart attack or stroke
  • have liver disease
  • if there is a family history of thrombosis or clots
Progestins – synthetic progesterone-like hormones and Progestogens – both naturally occurring and synthetic forms of progesterone
  • Progestins provide pain relief for up to 80% of women with endometriosis
  • It is not known exactly how progestins relieve the symptoms of endometriosis, but it is believed they suppress the growth of the endometrial tissue in some way, causing them to shrink gradually and eventually disappear
There are oral forms that are taken daily or long-acting forms given through injection, implant or IUD.
Possible side effects include:

  • irregular bleeding
  • breast tenderness
  • acne
  • abdominal bloating
  • fluid retention
  • mood changes/depression
  • nausea/vomiting
  • dizziness
  • tiredness
  • weight gain

 

GnRH agonists modified versions of gonadotrophin-releasing hormone (GnRH) – a naturally occurring hormone that stops/suppresses the menstrual cycle.
The GnRH agonists reduce or eradicate endometrial implants by suppressing ovulation and the production of oestrogen and progesterone by the ovaries. The low levels of oestrogen in the body mean the endometrial implants are no longer stimulated to grow and break down each month so they gradually shrink or ‘dry up’. This creates a temporary chemical ‘menopause’. This method is usually used for moderate to severe endometriosis. It is as effective as other medical therapies and may be used pre or post-surgery.
The most commonly reported side effects are those associated with menopause, which include:

  • hot flushes/night sweats
  • vaginal dryness
  • mood changes/depression
  • acne
  • muscle pains
  • decreased breast size

The GnRH agonists also cause a marked decrease in bone density (thinning of the bones). However, much of this loss of bone density is reversed within six months of completing treatment and is usually completely or almost completely reversed within 12-18 months of completing treatment.  Nevertheless, this loss of bone density can be serious as it can predispose you to osteoporosis. Oestrogen therapy is often prescribed to alleviate the menopause symptoms and stop bone loss. Discuss with your doctor whether or not you should have a bone density scan (DXA) before beginning treatment.

Danazol and Gestrinone are two other synthetic hormones. Danazol is used to aid pain relief, while Gestrinone suppresses the menstrual cycle to reduce oestrogen production and stop ovulation. Danazol and Gestrinone are rarely prescribed because they have many side effects, particularly testosterone-like side effects such as acne, oily skin/hair, increased facial /body hair and deepening of the voice.

Treating endometriosis with surgery

Surgery for endometriosis aims to remove as much visible endometriosis as possible and to repair any damage caused by the condition.  Endometriosis is seen as implants (patches of endometriosis), cysts, nodules, endometriomas (chocolate cysts) and adhesions.

Laparoscopy

Laparoscopic surgery (keyhole surgery/insertion of a thin telescope with a light into the abdominal cavity) is an operation to reduce symptoms and improve fertility by removing endometriotic patches, implants, cysts, nodules and adhesions by cutting them out (excision) or burning them (diathermy). This is the usual method for excisional endometriosis surgery, to:

  • remove large cysts and endometriomas
  • remove an ovary/ovaries (fallopian) tubes
  • surgically repair any damaged organs

Laparotomy

A laparotomy (an open operation requiring a larger cut in the lower abdomen) is a major operation that may be performed if endometriosis is severe and extensive or because of previous abdominal surgery that means laparoscopic surgery is not an option. It may also be performed if the gynaecologist is not skilled in advanced laparoscopic surgery.

Hysterectomy

In long-term recurrent severe endometriosis associated with chronic pain that has not responded to treatments or multiple surgeries, a hysterectomy and bilateral salpingo-oophorectomy may be performed – removing the uterus and both ovaries and fallopian tubes. This causes a surgical menopause. Sometimes the surgery required may include removal of parts of the bowel or bladder containing endometriosis. This complex surgery is usually performed by a specialist laparoscopic gynaecologist who may be joined by a specialist bowel surgeon or urologist. Hysterectomy is recommended rarely. It is only considered an option for women who do not want to have children, when quality of life is significantly impaired and when all other treatments have failed. Hysterectomy may not cure the symptoms or the disease.

Hormone replacement therapy after hysterectomy

If your ovaries are removed through surgery, then hormone replacement therapy (HRT), normally oestrogen-only therapy, will prevent or reduce the effects of early menopause. However, there may be a small risk you will have a persistence or recurrence of your endometriosis because of the small amounts of oestrogen taken or absorbed during the therapy. Sometimes combined HRT is prescribed immediately after surgery. Sometimes it is recommended you wait three to six months after your hysterectomy before you begin HRT. This delay may lead to any remaining endometrial implants wasting away. However, symptoms may be so severe that treatment becomes necessary immediately after surgery. Ask your doctor to refer you to a specialist clinic or centre for early menopause management. One type of HRT, called Tibolone, may be suitable as it does not stimulate endometrial cells in the same way as standard HRT does.

Combined treatments

Combined treatments involve a course of hormonal treatment before or after, surgery to enhance the effects of the surgery. Hormonal therapy may be used prior to surgery to shrink the size of endometriomas and endometriotic implants. Some studies have shown there is a delay in the return of endometrial pain, if the surgery is followed by treatment with:

  • GnRH agonists
  • the Mirena intrauterine device (IUD)
  • the oral contraceptive pill

Managing symptoms in teenagers

Two thirds of women with endometriosis have symptoms before the age of 20. For teenagers, particularly those under 16 years of age, the specialist and/or GP may manage symptoms with medications before a laparoscopy. The aim of the medications is to reduce pain. The combined oral contraceptives can be used to stop any bleeding and suppress the growth of endometrial cells, which may relieve pain until surgery is thought to be necessary. It is important to note that girls who are not sexually active can take the combined oral contraceptive pill to reduce their symptoms. Common medications used are NSAIDs (non-steroidal anti-inflammatory drugs) such as aspirin, ibuprofen and naproxen. However, if pain persists beyond three months, if you are unable to take medications, or if you have visited a GP or hospital for pain three or more times in a six-month period, a laparoscopy should be offered. If you are referred to a gynaecologist specialising in endometriosis, the laparoscopy will include removal of the endometriosis, not just the diagnosis.

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