A group of women are calling on the NHS to give doctors better training on endometriosis.
The condition affects 1.5 million women in the UK and takes an average 8 years to diagnose.
What is endometriosis?
Endometriosis occurs when tissue that behaves like the lining of the womb is found in other parts of the body.
This lining can start to cover the ovaries, fallopian tubes, parts of the stomach and bladder or bowel.
The condition can also affect fertility.
Endometriosis mainly affects girls and women of childbearing age. It is less common in women who’ve been through the menopause.
What are the symptoms?
Symptoms include chronic pelvic pain, extremely painful periods that stop women taking part in normal activities, pain during or after sex and painful bowel movements.
Pain or discomfort going to the toilet, bleeding from your bottom or blood in your poo are also common – as is excessive tiredness.
What are the causes?
The cause of endometriosis is unknown.
Several theories have been suggested, including:
- genetics – the condition tends to run in families, and affects people of certain ethnic groups more than others
- retrograde menstruation – when some of the womb lining flows up through the fallopian tubes and embeds itself on the organs of the pelvis, rather than leaving the body as a period
- a problem with the immune system (the body’s natural defence against illness and infection)
- endometrium cells spreading through the body in the bloodstream or lymphatic system (a series of tubes and glands that form part of the immune system)
Are there any treatments?
There is currently no cure for endometriosis, but there are treatments that can help ease the symptoms.
- anti-inflammatory painkillers – such as ibuprofen
- hormone medicines and contraceptives – including the combined pill, the contraceptive patch, an intrauterine system (IUS), and medicines called gonadotrophin-releasing hormone (GnRH) analogues
- surgery to cut away patches of endometriosis tissue
- an operation to remove part or all of the organs affected by endometriosis – such as surgery to remove the womb (hysterectomy)
Do treatments cause any other problems?
One of the main complications of endometriosis is difficulty getting pregnant, or not being able to get pregnant at all.
Surgery to remove endometriosis tissue can help improve fertility, although there is no guarantee that women with the condition will be able to get pregnant after treatment.
Surgery for endometriosis can also sometimes cause further problems, such as infections, bleeding, or damage to affected organs. If surgery is recommended for you, talk to your surgeon about the possible risks.
Read more about the complications of endometriosis here.
Women with endometriosis can sometimes experience a number of complications.
Endometriosis can cause fertility problems. This is not fully understood, but is thought to be because of damage to the fallopian tubes or ovaries.
But not all women with endometriosis will have problems and will eventually be able to get pregnant without treatment.
Medication will not improve fertility. Surgery to remove visible patches of endometriosis tissue can sometimes help, but there’s no guarantee this will help you get pregnant.
If you’re having difficulty getting pregnant, infertility treatments, in vitro fertilisation (IVF) may be an option.
But women with moderate to severe endometriosis tend to have a lower chance of getting pregnant with IVF than usual.
Adhesions and ovarian cysts
Some women will develop:
- adhesions – “sticky” areas of endometriosis tissue that can join organs together – fluid-filled cysts in the ovaries that can sometimes become very large and painful
- ovarian cysts
These can both occur if the endometriosis tissue is in or near the ovaries.
They can be treated with surgery, but may come back in the future if the endometriosis returns.
Like all types of surgery, surgery for endometriosis carries a risk of complications.
The more common complications are not usually serious, and can include:
- a wound infection
- minor bleeding
- bruising around the wound
Less common, but more serious, risks include:
- damage to an organ, such as a hole accidentally being made in the womb, bladder or bowel
- severe bleeding inside the tummy
- a blood clot in the leg or lungs (
Before having surgery, talk to your surgeon about the benefits and possible risks involved.
Bladder and bowel problems
Endometriosis affecting the bladder or bowel can be difficult to treat and may require major surgery.
You may be referred to a specialist endometriosis service if your bladder or bowel is affected.
Surgery for endometriosis in the bladder may involve cutting away part of the bladder.
A tube called a urinary catheter may be placed in your bladder to help you pee in the days after surgery.
In a few cases, you may need to pee into a bag attached to a small hole made in your tummy. This is called a urostomy and it’s usually temporary.
Treatment for endometriosis in the bowel may involve removing a section of bowel.
Some women need to have a temporary colostomy while their bowel heals. This is where the bowel is diverted through a hole in the tummy and waste products are collected in a bag.
What is the guidance given to doctors to speed up diagnosis?
The All Parliamentary Group on Women’s Health said 40% of more than 2,600 women who gave evidence to it reported they had seen a doctor 10 times before being diagnosed.
In the guidance, doctors are told to consider endometriosis in women reporting even just one symptom, such as pelvic pain or very painful periods.
It also suggests a number of ways of helping to diagnose the condition, such as ultrasound and keyhole surgery to look inside the body (laparoscopy).
The guidance warns that the possibility of endometriosis should not be excluded even if abdominal or pelvic examinations or ultrasound or MRI are normal.
GPs should also consider a three-month course of painkillers such as paracetamol or ibuprofen for pain and can advise women on taking the Pill to help relieve symptoms.