Dionne's Experience with Endometriosis

Hi everyone!

My name is Dionne, I’m 24 years old and live in Scotland.

I’m delighted to have the opportunity to share my story and experiences with you through the SecuriCare blogs.

I was diagnosed with Endometriosis in 2016 and have since been an advocate for women's health and the condition. My aim is to raise as much awareness as possible around Endo and the difficulties that come with it.

What is Endometriosis?

Endo is a debilitating condition where tissue, similar to the womb lining, grows outside of the womb, for example on the bladder or bowel.

You can find out more about Endometriosis on the NHS website.

My Endometriosis Journey

I started experiencing a range of symptoms such as bad period pain, heavy periods, nausea and pain when moving my bowels. I visited my doctor where I was told it was normal, I probably just had bad periods and it would get better once I got older. I held on to this and hoped that what they said was true.

After more visits to the doctor due to the continued symptoms, I was eventually referred to gynaecology and they started me on various types of hormones and pain medications, both were mostly trial and error and didn’t take away the pain that I was experiencing.

I was told that they suspected I had endometriosis, something I’d never heard of. I had a laparoscopy in 2016 and that was when I discovered I had stage 4 endometriosis. I was told that I had endo on my bowel and due to the high risk, they couldn’t remove it as I would probably need further surgery and may end up needing to have a stoma formed.

Since 2016, I have had 4 surgeries for the condition and various investigations because the disease has affected some of my other organs, in particular my bladder. Unfortunately, the nerves in my bladder have been impacted which has caused an issue with voiding and resulted in the need for me to use an intermittent self-catheter (ISC). I would spend 45 minutes on the loo, straining and nothing would happen. My doctor introduced me to ISC and although it took me time to adjust and learn how to catheterise, it’s given me reassurance that I’m emptying my bladder fully and has helped ease some of the pain I was experiencing in my stomach.

I’ve met so many other people on social media, who like me have had to use an ISC due to endometriosis and we’ve always agreed that there isn’t enough awareness about the impact endometriosis can have on the bladder.

I’ve always been open about my experience of living with endometriosis and I’m glad to have a platform to share my experiences and help others who are new to using an ISC or who’s endometriosis has affected their bladder and bowel.

I firmly believe that finding support when you have a health condition can make the whole thing just a little easier.

I set up my Instagram @endowarrior_x to offer support for those living with endo and its symptoms, so if you’re looking for some advice, a chat or someone just to listen to your concerns, drop me a message!

I can’t wait to share more of my journey with you.

Until next time!

Dionne x