Myth Busting Endometriosis

• Its normal to heavy and painful periods

It is simply not true that it's normal to have very painful or heavy periods.  Unfortunately, one of the biggest barriers to diagnosis and treatment is a persistent acceptance that its normal for women to experience this and this myth is often perpetuated by those close to you who themselves have been dismissed in the past.  Do contact your GP and do expect them to listen to your concerns and refer to a specialist if it’s not getting better.

• Endometriosis can’t be diagnosed without surgery

Not true!  Endometriosis can be diagnosed by a combination of examination and ultrasound.  Ovarian endometriosis (endometriomas) are easily recognisable on ultrasound and specialist sonographers can also see bowel and bladder endometriosis on ultrasound.  Most importantly however, it is true that you can’t exclude endometriosis without a laparoscopy (keyhole surgery).

• Endometriosis always causes severe pain

Not always.  Some can have severe endometriosis and be symptom-free.  Conversely, those with severe symptoms may have relatively mild disease.

• Women with endometriosis can’t conceive naturally

It's true that endometriosis can affect fertility, people with endometriosis do have lower conception rates and higher rates of miscarriage.  However, many with endometriosis will conceive naturally or have successful pregnancies after fertility treatment.

• IVF is the only option 

Fertility is complex with multiple factors being important.  With up to 50% of those with sub-fertility having endometriosis, surgery can significantly increase the chances of falling pregnant naturally.  This seems to be especially so for those with milder forms of the disease.

• Hysterectomy is or isn’t a cure for endometriosis

Understanding whether or not you will benefit from a hysterectomy as part of your surgical treatment depends on your individual circumstances.  Hysterectomy remains an entirely appropriate surgical choice for people with adenomyosis, fibroids or who haven’t responded to simple medical treatments.  It is not however, a panacea and hysterectomy alone won’t treat endometriosis.

• Taking contraceptives is just masking an underlying problem

This is another half truth and will depend on your perspective.  Hormonal treatments, often contraceptives, can dramatically improve symptoms such as heavy and painful periods with known or suspected endometriosis.  There is also evidence that suggests it can reduce the size of endometriomas (ovarian cysts).  For many who are symptomatic, this is often a sensible 1st line treatment with surgery reserved for those whose symptoms do not improve or who have another issue such as sub-fertility

Things everyone should know

Your GP should refer you to a gynaecologist or endometriosis specialist if you have persistent or severe symptoms that do not resolve with paracetamol + ibuprofen or when taking hormonal contraception.

The only way to definitively exclude endometriosis is by laparoscopy (keyhole surgery).  The specialist performing this should be skilled at recognising endometriosis and other causes of pelvic pain.

For people who get their periods with severe disease that is deeply invasive or involving the bladder or bowel should be managed by an accredited endometriosis surgeon. The BSGE provides this accreditation and can help you find your nearest specialist.

Mr Matthew Erritty MBChB MRCOG

Consultant Gynaecologist, Centre for Endometriosis & Minimally Invasive Gynaecology, Ashford and St Peters NHS Foundation Trust