Endometriosis

Patient Experience

  • Reference Number: HEY1480-2024
  • Departments: Gynaecology
  • Last Updated: 1 August 2024

Introduction

This leaflet has been produced to give you general information about your condition and possible treatment. Most of your questions should be answered by this leaflet.  It is not intended to replace the discussion between you and your doctor, but may act as a starting point for discussion.   If after reading it you have any concerns or require further explanation, please discuss this with a member of the healthcare team.

What is endometriosis?

Endometriosis is a very common condition affecting about 1 in 10 women of childbearing age. It may affect as many as 2 million women in the UK, and does not discriminate between age, race or colour. It occurs when cells similar to those normally lining the womb (endometrium) begin to grow in the wrong place, outside the womb, in other parts of the body. It mainly develops within the pelvis. It is thought there may be a genetic link and it appears you are more likely to develop endometriosis if you have a family member who has got endometriosis.

It can affect all of the pelvic organs including the ovaries, fallopian tubes, supports of the womb (ligaments), bowel, bladder and the lining of the pelvis and abdomen (peritoneum). If it involves the ovary then it often causes cysts (endometrioma or “chocolate cysts”). Rarely is it found in other areas such as the nose or lungs. It can also occur in the muscle layer of the womb, deep to the womb lining – a condition called adenomyosis.

During the normal menstrual cycle special chemicals called hormones circulate throughout the body. They cause the release of an egg from the ovary and make the endometrium thick, ready to accept the fertilised egg. If pregnancy does not occur then the endometrium is shed as a ‘period’. With endometriosis, the endometrial like cells outside of the womb may also respond to the hormones of the menstrual cycle, similar to the cells lining the womb. They can then produce chemicals which may cause pain, other symptoms and may interfere with fertility.

What causes endometriosis?

No one knows what causes endometriosis, but there does appear to be a genetic link. Dr. Sampson in the early 1920’s suggested that endometriosis resulted from “retrograde menstruation”. In up to 90% of women during a period, blood flows backwards down the fallopian tubes and into the pelvic area. This blood contains cells from the lining of the womb, which may then stick to surfaces outside the womb to cause endometriosis. This does not explain many things about endometriosis – like how it can be found in lungs or other parts of the body. Other people believe that as the womb develops, cells can be put down in the wrong place to later develop into endometriosis. It could spread through the blood stream or lymphatic system from the womb, or could be a reaction by the cells in the tummy lining (peritoneum) to some form of injury. It could also be because the body does not adequately clear cells from the peritoneum or attacks itself – an “autoimmune” process. It is likely that it is a combination of these things.

It is known that it is hormone dependent, just like the womb lining (endometrium) that responds to hormonal changes resulting in a period, the endometrial-like tissue to also bleed, causing pain, inflammation and scarring.

Diagnosing endometriosis

Based on your symptoms you may be asked to complete a pain and symptom diary, this will help aid discussions with your doctor.

When you attend the gynaecology clinic, you may be offered an abdominal and pelvic examination to identify the presence of any masses or pelvic signs. This examination may involve a speculum examination to visualise the vagina and cervix.

What are the symptoms of endometriosis?

The most common symptoms include:

  • Pelvic pain
  • Pain during or after sexual intercourse (dyspareunia)
  • Pain with or before periods
  • Infertility
  • Chronic pelvic pain

In addition, some women with endometriosis suffer from:

  • Heavy periods
  • Discomfort when urinating
  • Painful bowel movement (with possible bleeding from the anus)
  • Symptoms similar to irritable bowel – nausea, vomiting and constipation
  • Bloating
  • Pain with ovulation
  • Pain down the inside of the thigh
  • Fatigue and depression
  • Rarely – rectal bleeding, coughing up blood, shoulder pains, nose bleeds, cyclical blood in the urine.

Pain with intercourse, periods and infertility are the most common reasons why doctors refer women to gynaecologists. Other symptoms are often ignored or result in referral to other healthcare professionals, resulting in delayed diagnosis.

There are 2 different types of endometriosis:

  • Mild to moderate – these patients are managed in the hospital by the gynaecology team
  • Severe – these patients are managed through the hospitals Endometriosis centre

Treatment options

Pain management

  • Heat and comfort, may help to reduce pain.
  • Pain relief taking into account any other medical conditions or allergies. This will likely involve regular paracetamol or nonsteroidal anti-inflammatory drug (NSAID) alone or in combination. It is best to take NSAIDs the day before a period or pain is expected.
  • Codeine based pain relief are effective however they may cause constipation and bowel upset which could further aggravate your symptoms.

Hormonal Treatments

This can reduce pain and have no permanent effect on subsequent fertility.

  1. Hormonal contraceptives:

  • combined oral contraceptive pill or patch given continuously without a break. May help make periods stop and less frequent or make them lighter and less painful.
  • progestogen (pill, rod or injection) [NB the injection can lead to a long delay in return of period of more than a year, it is recommended that you do not use this if you wish to try for a family soon).
  • An interuterine system (IUS/Mirena coil) which helps reduce pain and makes periods either lighter or stop.
  1. GnRH analogues:

This medication stops the production of hormones in the body (temporary menopause) and can lead to inactivity and reduction of endometriosis lesions. It is given as a monthly or 3 monthly injection by the nurse at your GP practice. You will also be offered “add-back” HRT which can reduce or prevent possible menopausal type side effects of this medication. Commonly used medications are Leuprorelin (Prostap), Goserelin (Zoladex) among others. After the first injection it sometimes causes a flare up of your hormones before it reduces the levels so it can take a couple of injections to fully work.

  1. Dienogest

This medication is a progestogen tablet (taken daily) that reduces the levels of oestrogen in the body which leads to a reduction and inactivity of endometriosis lesions.

  1. Relugolix

This medication is a tablet (taken daily) that is similar to the GnRH analogues above so works by stopping the production of hormones in the body so reduces the activity of endometriosis lesions. It has HRT combined within the tablet so there is no need to take this separately.

  1. Testosterone derivatives:

These medications are very rarely used now to help with endometriosis symptoms as they have a high incidence of side effects. They decrease the production of the female hormones required for endometriosis to remain active. Commonly used medications of this type are Danazol or Gestrinone.

Other options

Some women have found the following measures helpful:

  • exercise, which may improve your wellbeing and may help to improve some symptoms of endometriosis
  • cutting out certain foods such as dairy or wheat products from the diet
  • psychological therapies and counselling.

Complementary therapies

Although there is only limited evidence for their effectiveness, some women may find the following therapies help to reduce pain and improve their quality of life:

  • reflexology
  • transcutaneous electrical nerve stimulation (TENS)
  • acupuncture
  • vitamin B1 and magnesium supplements
  • traditional Chinese medicine
  • herbal treatments
  • homeopathy.

Surgical treatment

Diagnostic Laparoscopy – if your symptoms continue you may be offered a keyhole operation to identify endometriosis. Although it is recommended that patients try medical treatments before having surgery as the medical treatment may help with the symptoms and there is a small risk of serious complications occurring with surgery.

See additional leaflets for more information (HEY325-2023 Laparoscopy and HEY839-2021E Anaesthesia explained).

During the operation your surgeon will inspect all areas of your pelvis for endometriosis or other causes of pelvic pain. If any areas are seen, we may be able to treat this at the time (if mild to moderate) or obtain a biopsy to confirm the diagnosis. This will help plan for future treatments or surgery.

If this procedure is normal, we can rule out endometriosis and offer alternative management or referral for your symptoms.

Should you require further advice on the issues contained in this leaflet, please do not hesitate to contact the Endometriosis Specialist Nurse on tel: 01482 624264 or email hyp-tr.endometriosis.cns@nhs.net

Should you require further advice on the issues contained in this leaflet, please do not hesitate to contact:

  • Endometriosis Clinical Nurse Specialist on tel: 01482 624264. If the nurse is not present, an answer phone is available.
  • Contact or visit your GP surgery.
  • Call the gynaecology ward for advice on tel: 01482 604387 or the ward you were discharged from.
  • Call NHS 111 and speak to a specially trained nurse.
  • Go to your nearest emergency department or call 999 in the event of an emergency.

Useful information

Information about our Gynaecology Services

Endometriosis UK – tel: 0800 8082227  –  www.endometriosis-uk.org

National Institute for Health and Care Excellence NICE Guidance [NG 73] Endometriosis: diagnosis and management https://www.nice.org.uk/guidance/ng73

Royal College of Obstetricians and Gynaecologists https://www.rcog.org.uk/for-the-public/browse-all-patient-information-leaflets/endometriosis-patient-information-leaflet/