Endometriosis — Why are We Finding Out About The Condition on Instagram and Not From Doctors?

What is Endometriosis?

Endometriosis is a condition where tissue similar to the lining of the womb grows in other areas, usually on organs in the pelvic area but can sometimes even spread as far as the lungs.

Image Credit: Cathryn Virginia/ Shutterstock


Symptoms of Endometriosis include but are not limited to:

  • Extremely painful periods

Length of Time for Diagnosis

The current estimated time in the UK for diagnosis is on average 7.5 years. Patients can often spend years going to their doctor with symptoms of Endometriosis which may often seem unrelated when the condition is not brought to the attention of the patient.* Oftentimes patients are told that their extremely painful and debilitating periods are normal.

Suggested treatment of Endometriosis is often birth control, in particular the pill. However, although the pill can help some patients see symptoms ease, it is not a long term solution for the condition.

Delays in diagnosis are attributed to the fact that Endometriosis is difficult to diagnose. Laparoscopy is the only way of confirming the presence of Endometriosis, waiting times for a laparoscopy vary throughout the UK. Appointments with a consultant can take up to 1 year after a referral from your GP (this is for the UK, Manchester in particular). However, in other areas of the UK, these waiting times can be much longer — with women in Northern Ireland waiting for up to 2 years before seeing a consultant.

Endometriosis on Instagram

Image Credit: sergey causelove/ Shutterstock

Social media can be a great tool to interact with those in a similar situation and to educate yourself on lesser-known conditions. Some of the fantastic informative Instagram pages that I have been following for some time include:

  1. @mypelvicpain — Sarah is constantly setting the record straight on misinformation associated with Endometriosis

It is down to Instagram pages such as the above that I discovered what Endometriosis was, and I was truly grateful for the information I uncovered.

I found out about Endometriosis on Instagram and I was the one to realize — and mention to my GP — that after years of issues with symptoms that the possibility of Endometriosis needed to be investigated further.

Northern Ireland born, Manchester-based Editorial Production Coordinator. Main interests include NI LGBTQIA+ Issues and Endometriosis.