Life With Endometriosis

Dionne shares how it feels to be diagnosed and live with Endometriosis, a health condition which affects about 1.5 million people in the UK.

As March is Endometriosis Awareness Month, find out what it’s like to live with the condition from someone who is experiencing it…

Then I Saw the Light Again…


People still ask me what it is despite it being a common condition. People think it’s just pain but it’s not; the physical and mental side of it makes the condition a much harder battle to fight.

Some days things can be going okay when pain is at bay and painkiller use is to a minimum. Then there’s other days. The days of pain, being confined to bed rest because of exhaustion and the painkiller use having to be increased. This is half of what it’s like to suffer from endometriosis. If I could try and describe the other sides of it I would.

The best thing I ever done was join online support groups and meeting other women who suffer from this horrendous condition.

When I was first told about the strong possibility of having endometriosis I felt alone. The words made life feel like it had come to a standstill. The anger attached; because of how much I’d been dismissed and my symptoms seen as something “psychological” and not being validated.

I knew nobody who had this condition which I’d never heard of.

The hours after that appointment researching what endometriosis was… I saw C that same day and when she said to me “I’ve got that too” it had become the most comforting words I’d heard that day.

To meet someone who could share the same struggle with me and not pretend to know what I was dealing with. To have someone who I could share this uncertain journey with and who’d be able to advise because they’d been where I was when first receiving a diagnosis. I found the processing of what I was dealing with hard.

There were so many things that came into question, fertility being the biggest one.

Girl sitting in the dark feeling helpless and alone. Girl opening door letting in the light.

When you’re young you have dreams of what you want in life when you become an adult. Things like having your own children and bringing them up to be the best that they can possibly be. I’m going to be honest here, it was so overwhelming – the amount of misinformation I was given by professionals who clearly misunderstood the condition.

The best thing I ever done was join online support groups and meeting other women who suffer from this horrendous condition.

Those women are also known as my endo sisters. They became my hope on the dark days and understood what I was thinking and feeling. To read posts from other women with the same fears as me. To finally not feel ashamed of saying what I was thinking and hearing/seeing the words “me too.”

The girls have become like family and just get how much suffering we have to deal with and the things endometriosis does.

My endo sisters are my biggest supporters and have been the light when I’ve been in the darkness.


Blog post republished with permission from the owner.

To find out more about Endometriosis or to seek support, you can visit any of the organisations below:

Young Scot supports young people to share their own voices, views and opinions and works with partner organisations and professionals who are experts in different topics. The views expressed in this blog are those of the young people, organisations and/or individuals who have taken part in the blog, not necessarily the views of Young Scot.

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