Understanding Endometriosis

March is Endometriosis Awareness Month! This year, more than ever, Endometriosis UK want to ensure the voices of those affected by endometriosis are not forgotten. Endometriosis is a painful condition where endometrium tissue grows outside the uterus. This layer of tissue should normally only line the uterus. However, with Endometriosis it can commonly attach itself to the ovaries, fallopian tubes, and tissue around the uterus and ovaries. In severe cases it can even attach to other organs.

Endometriosis is common. In fact, it’s believed to affect 10.8 million women globally. It is sometimes asymptomatic, but is usually characterised by a mix of the following signs and symptoms:

  • Painful, sometimes disabling, cramps during the menstrual period
  • Chronic pelvic pain – typically accompanied by lower back pain or abdominal pain
  • Painful sexual intercourse
  • Difficulty conceiving
  • Urinary urgency, frequency and sometimes painful urination
  • Bodily movement pain – present during exercise, standing or walking.

Yet this condition, which is clearly far from rare, is often misunderstood by the public and even patients themselves.

One problem is that, because it is often associated with the menstrual cycle, it is relatively easy to dismiss as just bad periods.

I was told my symptoms were normal and just part of being a young woman

This is a common story/phrase from patients and is being used by Endometriosis UK as part of their awareness campaign.

It’s not just period pain!

The idea that people should get on with it because it’s just period pain goes hand-in-hand with a dismissive attitude that is unhelpful. Faye Farthing, Campaign Manager, Endometriosis UK said, “Comments like this can be really damaging, not only to those experiencing the symptoms, but to society as a whole, as they are preventing people from seeking help and allowing taboos about menstrual health to continue.”

The message here is that periods that majorly disrupt your life are NOT normal. Periods should NOT render you housebound, unable to function or see you in A&E.

Diagnosis takes too long

A 2020 survey of 10,000 patients by a UK Parliamentary Group on Endometriosis found that, prior to getting a diagnosis:

  • 58% visited their GP more than 10 times
  • 43% visited hospital 5 times or more
  • 53% visited A&E departments

Faye Farthing comments, “During this time, many will be misdiagnosed, and in some cases, even told it’s in their head. Not only can the disease worsen if left untreated, but delayed diagnosis can also have a huge impact on someone’s mental health, career and relationships.”

With this in mind it is essential that patients see a specialist, as endometriosis needs specific examinations to be confirmed. These include ultrasound and MRI scans and sometimes laparoscopy. This is a keyhole surgical procedure that allows a thorough assessment of the pelvis.

The condition comes with a psychological impact

As with all long-term conditions, especially those coupled with uncertainty engendered by years of trying to find a diagnosis, there is a psychological dimension to the condition.

Faye Farthing said, “There needs to be a pathway in place so that those with the condition have access to support for both their physical and mental health. Endometriosis can be unpredictable; it can have a huge impact on people’s social lives and relationships.”

Treatment options

Typically, treatment initially involves hormones and pain-relief. But in severe cases, surgery may be an option to relieve pain, improve fertility, treat cysts and release scar tissue.

As with the diagnostic procedure, this usually means a laparoscopy; where the surgeon is able to remove scar tissue/adhesions with keyhole surgery. However, some people may need radical surgery, removal of the ovaries and/or uterus, although this is a last resort and certainly not for everyone.

Lifestyle measures can also play an important role in the management of the condition.  For instance, there is evidence suggesting that cutting down on meat and eating a high fibre plant-based diet may help with symptoms. Also, some people find that acupuncture, breathing techniques, yoga and regular exercise helps with pain management. These aren’t a replacement for medical help but can play a part in supporting your health and sense of control over your wellbeing.

Endometriosis UK also offers support. Faye Farthing concluded, “If you need someone to talk to, do reach out for our support services. We run a helpline, online forum and online support groups across the UK, as well as a series of webinars.”

Please click here for further information.