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Introduction

This information leaflet is for women with endometriosis who want to explore non-surgical options to manage their symptoms, or prevent recurrence of endometriosis following surgery. If you have any other questions or concerns, please speak to a member of the endometriosis team who will be happy to discuss further with you. 

What treatments are there for endometriosis?

Treatment will vary from woman to woman and needs to be determined by your personal priorities. Decisions for treatment should be made in partnership with your gynaecologist, but will depend on several factors: 

  • your age 
  • the severity of your symptoms 
  • your desire to have children and when
  • your desire for temporary or permanent contraception
  • severity of the disease 
  • previous treatment 
  • side effects of drugs and allergies
  • potential risks of any treatment

Broadly speaking, the options for treatment are: 

  • Conservative
  • Medical
  • Surgical - we have separate information leaflets on ‘Laparoscopic Surgery for Endometriosis’ and ‘Surgery for Deeply Infiltrating Endometriosis’. 

Medical Options

There are many different medical therapies used in the management of endometriosis. These can generally be divided into:

  • Hormonal – these can also reduce and treat the disease
  • Non-hormonal – pain killers and specialist pain medications

Hormonal Therapies

These are treatments that are used to act on the endometriosis and stop its growth. They either put the woman into a pseudo-pregnancy or pseudo-menopausal state. ‘Pseudo’ means simulated or artificial – both states are reversed when the patient has stopped taking the hormones. In addition, testosterone-like hormones are occasionally used to mimic the male hormonal state.

While not all of the hormonal drugs used to treat endometriosis are licensed as a contraceptive, they all have a contraceptive effect, so are not used if the patient is trying to become pregnant. 

All of the hormonal drugs carry side effects and are equally effective as treatments for endometriosis, so it’s often the side effects and personal choice that will dictate the choice of drug. 

Drugs that mimic pregnancy

  • Combined oral contraceptive pill 
  • Progestogens

The Combined Oral Contraceptive Pill (COCP) 

COCPs are tablets containing synthetic oestrogen and progestogen (female hormones). The combination of these hormones in the pill is similar to that in pregnancy, causing the menstrual cycle to stop, hence the symptoms of endometriosis being reduced. The pill is commonly used to treat endometriosis prior to a definite diagnosis as most women who take it do not suffer from side effects. It can also be taken safely for many years, including up to the menopause. The pill can be taken continuously (without a monthly break) to avoid bleeding - this is probably the most effective way to control the symptoms of endometriosis, and prevent recurrence.

The extended pill regime is where you:

  • Take the pill every day until you start bleeding (as long as you have taken at least one pack, or 21 pills, since your last break). It may be several weeks or even months before you have a bleed 
  • If you start to bleed, stop taking your pill for 4 days
  • Throw away those 4 pills in the pack, so you will know which day to restart taking them 
  • Restart your pill after 4 days, even if you are still bleeding
  • Continue to take the pill for at least 21 days, running the packs together, until your next bleed. Then stop for 4 days as before.

Taking the pill continuously in this way is off label (i.e. different to the way advised in the information leaflet inside the pack). However it is widely used in this way and there is good evidence to show that it is safe. Always make sure you have taken at least 21 days before stopping as this will prevent ovulation (release of an egg).

Not everyone is safe to take the COCP and your doctor will screen you for risk factors before offering it to you.

Progestogens

Pregnancy is characterised by higher levels of progesterone, thus taking progestogens (the synthetic form of progesterone) mimics the state of pregnancy. During pregnancy the endometrium (lining of the womb) is thin and inactive, so between 40-60% of women taking progestogens have no periods.

There are lots of different types of progestogens available, which are available in different forms – see table below for examples: 

Brand Name Generic Name How is it administered?
Cerazette®
(or similar alternatives)
Desogestrel Oral tablet taken every day without any breaks
Mirena IUS®
(or similar alternatives)
Levonorgestrel Intrauterine coil, licenced for 5 years

Depoprovera®
Provera® 

Medroxyprogesterone acetate Injection every 12 weeks      
Oral tablet
Nexplanon® Etonogestrel Implant placed in upper arm, licenced for 3 years

 

Common side effects of using progestogens include: 

  • Breakthrough bleeding – very common and usually settles by 3 – 6 months
  • Prolonged bleeding – can usually be treated by increasing the dose
  • Acne
  • Depression
  • Bloating
  • Breast discomfort
  • Fluid retention
  • Headaches 
  • Irregular bleeding 
  • Moodiness 
  • Nausea 
  • Vomiting 
  • Weight gain 

The side effects of progestogens are reversible, and usually disappear soon after completing treatment. There are no known long-term side effects of progestogen treatment. 

Drugs that mimic menopause

  • Gonadotropin-Releasing Hormone (GnRH) Analogues 

GnRH analogues are a form of the naturally occurring GnRH, which is produced in a part of the brain called the hypothalamus. GnRH analogues stop the production of the hormones FSH and LH. The ovaries switch off and temporarily stop producing eggs and the hormone oestrogen. Therefore, the endometrium (lining of the womb) and endometriosis do not grow and your periods stop completely.

Side effects

Low oestrogen levels created by the use of GnRH analogues can have adverse side effects. 
Common side effects experienced when using GnRH analogues are: 

  • Headaches 
  • Hot flushes 
  • Irritability 
  • Joint stiffness 
  • Night sweats 
  • Poor libido 
  • Vaginal dryness 
  • Thinning of the bones (usually only after 6 months of treatment)
  • Irregular bleeding (particularly in the first 4-6 weeks)

Using add-back HRT to combat side effects and protect bone health

HRT is typically used to reduce the symptoms that women may experience whilst taking GnRH analogues. HRT is also highly effective at protecting the bones from thinning, which tends to start occurring after 6 months of treatment. This is known as ‘add-back’ therapy. The use of HRT means that GnRH analogues can safely be given for longer than 6 months. 
It is probable that the risks associated with HRT do not apply to women who are taking GnRH analogues or have had a hysterectomy, unless they are naturally very near the age of menopause. This is because these women are just replacing hormones that their body would be producing naturally had they not had received either of these treatments.
We normally use a HRT tablet called Tibolone, because it has the best evidence in women with endometriosis. HRT can also be given in the form of a patch or gel. 

Male hormone drugs – testosterone derivatives

  • Danazol and Gestrinone 

Danazol and Gestrinone are related to the male hormone, testosterone. They lower oestrogen levels which directly switches off the growth of the endometrium (lining of the womb) and endometriosis. However, these drugs are rarely used nowadays as the side effects are not well tolerated. 

Side effects of testosterone derivatives: 

  • Acne and oily skin 
  • Bloating 
  • Decreased breast size 
  • Decreased libido 
  • Deepened voice (may be irreversible) 
  • Headaches 
  • Hot flushes 
  • Increased body hair 
  • Menstrual spotting 
  • Muscle cramps 
  • Weight gain

Pain Medications

Pain medication avoids the use of hormones so it does not prevent the growth of endometriosis; however, the management of pain is an important part of managing the condition. When taken appropriately, pain medication can be extremely effective. Either painkillers, or drugs that modify the way the body handles pain, can be used. Some women are reluctant to use pain medication to reduce pain, and feel that they are just ‘masking’ this symptom. However, if the body becomes accustomed to being in pain, it could lead to neuropathic pain (when the function of a nerve/s is affected in a way that sends pain messages to the brain, even if there is no injury or tissue damage to trigger the pain).

Acute and Chronic Pain

Pain is experienced by the stimulation of pain nerves. There are two types of pain that women with endometriosis may experience: 

  • Acute pain refers to pain that results from an injury or diseased tissue. When the injury has finished healing, the correlating pain will subside because the pain nerves stop being stimulated. For example, pain associated with the release of an egg from the ovary would be acute pain. 
  • Chronic pain is when signals are sent along the pain nerves even from normal tissue and the central nervous system comes to expect these signals. Because the body is so used to feeling pain, it continues to do so, even if there is no underlying specific injury. This therefore makes chronic pain harder to treat. 

The most effective drugs for acute pain are simple painkillers such as paracetamol or ibuprofen. The modern advice is to take your painkillers regularly ‘staying ahead of the pain’. Paracetamol can be taken in combination with ibuprofen and work together. When taken regularly, these can work very well. Then there are combination painkillers, such as co-codamol (codeine and paracetamol). Opiate based drugs such as codeine and tramadol can also be used but they have a sedative effect and can leave the user drowsy. They can also cause constipation which can make the endometriosis pain worse. 

For chronic pain, painkillers used to treat acute pain may not be very effective; however, someone with chronic pain may still experience acute pain, so these pain killers may still be needed for that purpose. Antidepressants – mainly Amitriptyline – can be used for chronic pain, in a lower dose than for the treatment of depression. They have been found to have an effect on the nervous system and the way the body manages pain. The pain messages travel through the body’s central nervous system, but these drugs can help to stop those messages from reaching the brain. Other drugs used include anti-epileptic drugs (gabapentin and pregabalin), which work on the neurons to reduce pain signals.

Pain Clinics

Pain clinics take a holistic approach, looking at the whole person. Treating pain usually involves a team approach to manage not only the pain itself, but also factors such as anxiety, depression and quality of sleep – all of which can affect how we feel pain. A comprehensive pain treatment plan may include medications, injections, counselling, exercise programmes and other treatments.

Conservative Options

Conservative measures often mean taking a ‘watch and wait’ approach. Although this may be appropriate in some cases, such as if you are approaching menopause or do not have any symptoms of endometriosis, it is generally discouraged. This is because endometriosis is often progressive, meaning that it can get worse and cause more problems.
Nevertheless, there are lots of things that we recommend that are conservative approaches to management. These can also be used on top of other medical and surgical treatments.

Nutrition

There has been quite a lot of research into diet and endometriosis, which suggests that avoiding certain foods and eating more of others may stop endometriosis from developing and/or reduce symptoms – including pain.

We recommend that you try and keep a food diary so as to work out whether any specific foods or food groups trigger your symptoms.

There is a lot of information on the Internet and in specialist books regarding diet and endometriosis which are worth reading.
Often we will suggest you try a few ‘exclusion diets’ to see whether your symptoms improve. For example, you may wish to try a:

  • Gluten free diet
  • Dairy free diet
  • Low FODMAP diet

We normally recommend that you try these one at a time, for a period of 2-3 weeks. If they don’t work for you, there is no need to continue them. If you feel that your diet has a large part to play in your endometriosis symptoms, we can refer you to a dietician or nutritionist for further advice. 

Transcutaneous Electrical Nerve Stimulator (TENS) 

TENS machines are small, unobtrusive machines with electrodes that attach to the skin and send electrical pulses into the body. The electrical pulses are thought to work by either blocking the pain messages as they travel through the nerves or by helping the body produce endorphins which are natural pain-fighters. 

Physiotherapy

Physiotherapists can develop a programme of exercise and relaxation techniques designed to help relax the pelvic floor muscles, reduce pain, and manage stress and anxiety. After surgery, rehabilitation in the form of gentle exercises, yoga, or Pilates can help the body get back into shape by strengthening compromised abdominal and back muscles.

Support Groups/Psychotherapy

These sessions are designed to teach patients how to adapt to living with a chronic condition. They will help you gain a better understanding of your condition, the impact it has on your life and provide support and confidence to help take control of your health. Topics may include dealing with pain and extreme tiredness, coping with feelings of depression, relaxation techniques and exercise, healthy eating, communicating with family, friends and health professionals, and planning for the future.

Complementary Therapies

We recognise that some complementary therapies may be beneficial in controlling the symptoms of endometriosis. Generally speaking, these therapies are not proven to be effective, but may be helpful to individuals in managing pain or stress.
It is important when embarking on a complementary therapy to ensure you are following the advice of a registered, professional practitioner. Always consult your GP before you try a complementary therapy.
Complementary therapies include: acupuncture, Chinese herbal medicine, homeopathy, hypnotherapy, osteopathy, reiki, reflexology, shiatsu, skenar therapy, Western herbal medicine and yoga. 

For more information visit www.endometriosis-uk.org