Health advice

Stevie was first diagnosed with endometriosis in 2017 at the age of 28. Since her diagnosis, she has used her experience to help advocate for others who live with the condition through her online community group, EndoWarriors United.

She tells us about the difficulties of getting a diagnosis and how she hopes perceptions of endometriosis will change.

How did you manage your endometriosis before you were diagnosed?

Since I started puberty, I’ve always had heavy periods (menorrhagia). I remember in secondary school my sanitary pads would be overfilled and would leak onto the chairs. Even then I wondered whether that was normal.

However, when I would go to the GP, I would feel as though I was being gaslighted even though mum was advocating for me. It would always be the usual “it’s just heavy bleeding, let’s give you some combination contraception or treatments to see if they will help”. There was no real effort made to understand the cause of my pain.

This was my norm until I was 28. I was told it was "normal" for women to have this type of period pain and that hormone treatments could help, but that painkillers and a hot water bottle would also help me manage.

It was exhausting and stressful. I felt like I was going crazy!

How did you feel when you were finally diagnosed?

When my consultant came back with the answers, I cried!

They were happy tears because I knew all a long that what I was experiencing was not normal at all. A pre-teen should not be losing as much blood as I was and feeling so weak and in agony.

I was in disbelief. It took 8 years for the diagnosis to be confirmed.

"Endometriosis can affect your entire body, so even when I’m not on my period, I can still get symptoms. A swollen tummy, gas issues, leg cramps and fatigue are only some of the symptoms I experience when I’m not on my period."

What have been the biggest challenges since your diagnosis?

Some of the most challenging times are when I have flare-ups during my period. On two separate occasions, I’ve keeled over in pain – almost collapsing on the floor. The pain is unreal. I could barely talk when I was going through it.

Endometriosis can affect your entire body, so even when I’m not on my period, I can still get symptoms. A swollen tummy, gas issues, leg cramps and fatigue are only some of the symptoms I experience when I’m not on my period.

In the few years since my diagnosis, the disease has spread to my left ovary fusing with the uterine wall, slightly.

What treatment do you use?

I'm yet to find a treatment that helps. I had the IUD (Mirena Coil) fitted in September 2023 and 6 months later, I'm still having flare-ups, low mood, no libido, back pain and joint pain.

I consulted my incredible doctor at Birmingham Women's Hospital, who is the first consultant who has really listened to me and come up with another plan of action.

He's asked me to stick with the coil a bit longer but my local GP has the green light to remove it if I change my mind. I’m to have an MRI to check my pelvis and will be referred to the endometriosis team at the hospital for further discussion.

Do you use any non-medical approaches to manage your symptoms?

Yoga and meditation can help. These practices help to release tension and relax the mind. But I must stress, that each woman's symptoms are very different – so what may work for one person, may not work for another.

"You don't feel alone when you know that other people live with similar experiences to you."

How do you find information and support?

I follow Anna (@battlewithendo_ox) on Instagram, who has also set up a new charity, Menstrual Health Project. She is inspiring and has been advocating for women with endometriosis and raising awareness, for a very long time. She has an incredible personal story of endometriosis too.

You don't feel alone when you know that other people live with similar experiences to you.

I've also joined groups on Facebook and have set my own local support group on Facebook, EndoWarriors United, to build a community for local girls and women who are suffering from this incurable disease and just support one another. As well as Endometriosis UK and Endometriosis Foundation.

How would you like to see endometriosis care evolve?

It would be great to get more support from doctors.

Endometriosis is a whole-body, chronic disease, it isn't just a "bad period:. It's a debilitating illness to live with and every day can be a struggle.

There is no cure for endometriosis, and it can grow anywhere within the body. If everyone from your GP to your surgeons could be more empathic it would make a huge difference.

All we ask is to be heard and supported.

Stevie is the creator and founder of EndoWarriors United.