Endometriosis is a common condition that is often difficult to diagnose. Women with this condition should be seen by a fertility specialist who can advise them on the best strategies to conceive. Although there does appear to be a connection between lower fertility and endometriosis, most women with mild to moderate endometriosis will conceive naturally. In this article we cover the basics of this condition, symptoms of endometriosis, treatments, and how to access care.
What is endometriosis?
Endometriosis is a common condition, affecting up to 1 in 5 women, where the endometrium, the tissue that lines the inside of the womb (uterus) is found outside the uterus. Usually it is found in the pelvic area and lower abdomen but rarely can be found in other areas of the body.
Endometriosis can have no symptoms and many women with the condition don’t know they have it. In some women it can cause symptoms such as painful and heavy periods, pain during sex and using the toilet as well as other symptoms.
Unfortunately it is a condition that has been underdiagnosed to date and some women report having to visit their doctor multiple times over the course of many years to receive a diagnosis.
What are the symptoms?
If symptoms develop they typically begin between the ages of 25-40. Sometimes symptoms begin in the teenage years. Areas of endometriosis can vary in size from very small to large clumps. Usually, the bigger the patches of, the worse the symptoms. However, this is not always the case.
There are many different possible symptoms of endometriosis which may be why it has previously been difficult to diagnose. Some of the more common symptoms include:
- Painful periods – The pain typically begins a few days before the period and usually lasts the whole of the period. It is different to normal period pain which is usually not as severe and doesn’t last as long.
- Pain during sex – The pain is typically felt deep inside and may last a few hours after sex.
- Pain in the lower abdomen and pelvic area – Sometimes the pain is constant but it is usually worse on the days just before and during a period.
- Bleeding in between periods
- Other symptoms include fatigue, pain on passing poo (faeces), pain in the lower abdomen when you pass urine, low back pain and, rarely, blood in the urine or faeces.
- Difficulty becoming pregnant – This may be due to clumps of endometriosis blocking the passage of the egg from an ovary to the Fallopian tube. Sometimes, the reason for reduced fertility is not clear.
What causes endometriosis?
Currently it is not known what causes this condition. Several theories have been suggested, including:
- Genetics – the condition tends to run in families
- 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
But none of these theories fully explain why endometriosis happens.
How to test for endometriosis?
Because endometriosis manifests itself in a variety of ways and shares symptoms with other conditions, diagnosis can be difficult and often delayed. Recent research shows that there is now an average of 7.5 years between women first seeing a doctor about their symptoms and receiving a firm diagnosis.
It can help to have a record of your symptoms and Endometriosis UK has a diary that you can use to document these. It is available here.
Your GP will usually refer you to a specialist if you have the following symptoms:
- Severe, persistent or recurrent symptoms (see above)
- Pelvic signs of endometriosis
- Initial management has not been effective
- They suspect you have deep endometriosis involving the bowel, bladder or ureter
- They suspect you have endometriosis outside the pelvic cavity.
Investigations will usually be done under the care of gynaecology. These might include a pelvic examination, an ultrasound scan or in certain circumstances an MRI.
Scans, blood tests and examinations are not a conclusive way to diagnose endometriosis and a normal scan, blood test and internal examination does not mean that you do not have this condition.
The only certain way to know is by laparoscopy (looking inside the abdomen during surgery). Read more about the pros and cons of having a laparoscopy for endometriosis here.
How is it managed?
Unfortunately there is no cure for endometriosis currently. The management options fall into three categories, pain relief, hormonal treatments and surgical treatments.
- Pain relief – pain relief is often the first port of all. Paracetamol and anti-inflammatory medications (such as ibuprofen) may be tried initially. If these are unsuccessful stronger pain relief may be recommended.
- Hormonal treatments – for example, the combined oral contraceptive pill or progestogen may be recommended by your doctor. These should not be used if you are trying to conceive.
- Surgical treatments – surgery may be performed to diagnose endometriosis or to treat lesions
- A combination of the above treatment options
What impact does it have on fertility?
Endometriosis does not necessarily cause infertility but there is an association with fertility problems, although the cause is not fully established. Even in severe cases, natural conception is still possible. It is estimated that 60-70% of those with endometriosis can get pregnant spontaneously. For those struggling to conceive, fertility treatments, such as IVF, can be an option.
Visiting your doctor about fertility and endometriosis
If you have or you suspect you might have endometriosis then don’t wait to visit your GP if trying for a baby.
NICE guidelines say that the management of endometriosis-related infertility should have multidisciplinary team involvement with input from a fertility specialist. Hence getting an early referral from your GP is so important.
A specialist can talk you through options to optimise your fertility. These might include surgery to remove parts of the endometriosis or ablation.
- All party parliamentary group on endometriosis. Time for Change
- Tommys website. How does endometriosis affect fertility?
- NICE Guidelines. Overview | Endometriosis: diagnosis and management | Guidance