My Journey With Endometriosis

Dionne shares with us her experience of being diagnosed with endometriosis and where she has found support.

I remember feeling dread each month when I was due my period as the pain would be so debilitating.

There were occasions I had to be sent home from school and there was one time I was bleeding so heavily it had leaked through onto my skirt and I was so embarrassed. I remember getting changed for PE when the pain hit, and I’d taken some Feminax tablets that a friend had told me to try but that didn’t touch the pain.

Periods was never something that was spoken about a lot, and I was always led to believe that they would get better as I got older.

My GP referred me to Gynaecology to be seen as the symptoms I had were not normal.

The process before diagnosis was tough as I had some appointments where I was dismissed and would leave in tears. I knew there was something wrong and I stood my ground at one of my appointments and I remember the gynaecologist saying to me “We need to do a diagnostic laparoscopy but I think you have endometriosis” and at that point I felt really overwhelmed as I knew nothing about the condition and I was told to look online and get information from there.

After 6 years of pain and seeing multiple doctors I was diagnosed with severe endometriosis in 2016.

I was told I would need an MRI scan and further surgery as it would be more of a complex operation, and it would need to be discussed at a multidisciplinary meeting with other specialists. I’ve had multiple surgeries over the years due to this condition.

Due to the severity of my endometriosis, I have struggled with my mental health at times. I would spend a lot of the time in pain and found I was stuck in bed a lot of the time.

The symptoms were constant, and it really did bring me down a lot. I felt like a prisoner in my own body and every day was a struggle. There were times I just felt like I was existing and not living. It must have been difficult for those around me to see me in constant pain and struggling but it was the love and support of them that got me through these low points.

The most important thing to have when living with endometriosis is support.

Find out where to get support with Endometriosis or how you can support someone…

It helps to have a supportive GP as they can help when symptoms flare up and put things in place to help you manage. I have found Endo Warriors West Lothian Support Group has been a huge help through this journey as I have met people who understand what I’m going through and also have a safe space either online on the closed Facebook group or at face-to-face meetings to talk about.

It’s ok not to be ok and living with endometriosis can be tough. Reach out to those around you and remember it’s ok to ask for help and support.

You are never alone through this, there is always someone who will listen.

I made an Instagram page which documents my journey with endometriosis.

I feel it’s important to show the reality of living with this condition but also supporting others. My Instagram is @endowarrior_x.

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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