“Doctors don’t understand the impact endometriosis has on every aspect of your life”

“There were times when I could barely get out of bed”

Allie, 33 from Sheffield, shares her struggle for her diagnosis and treatment of endometriosis to be taken seriously by doctors and the impact that this has had on all areas of her life.

She offers her opinions on the importance of the NHS having a more joined up approach with current support services available to women living with the condition.

“I’ve struggled with endometriosis since I was a teenager in Australia.

Very early on, I learnt that GPs either knew very little about the condition or were quick to attribute my symptoms to something completely unrelated, like colitis. I didn’t feel like the older male GPs felt comfortable discussing it with me.

To be honest, it was a very similar experience when I moved to the UK. Even my female GP admitted that she knew very little about Endometriosis.  

There isn’t much we can do with the older doctors, but we do need to ensure that new doctors are aware of the common symptoms of Endometriosis and are willing to discuss a woman’s concerns in this area.

I just don’t think that doctors understand the impact having endometriosis has on every aspect of your life, particularly your mental health.

From being able to perform day to day tasks, being able to work and managing the side effects of prescribed meds. I’m actually on a range of meds: nerve blockers, an IUD contraceptive, hormones, opioids for pain.

That’s a lot of stuff to be putting into your body just to function. I often feel bloated and lethargic. I’ve also lost every opportunity to work my usual jobs, and I’ve had to pick up a cleaning job, which often aggravates my condition.

Allie pull out quote

Hospital waiting lists are honestly beyond a joke.

The appointments I have with my consultant are months apart and even when I was in enormous pain on a daily basis it was impossible to get to speak to them between those times to discuss symptoms or ask for adjustments to my pain medication.

Eventually my consultant raised possibility of surgery. But I had to wait four months for a face-to-face appointment which they said I needed before I could have it.

On the day of the appointment, he was too busy to see me. But his colleague told me the wait for surgery would be six to nine months. The thought of that was horrendous.

He suggested I could go on medication to put me into a chemically induced menopause as an alternative. I said I didn’t know much about it and that it sounded quite scary – I’m only 33. I asked for more information and support, and just got sent away with a leaflet.

I felt so lost. The lack of support, the waiting times, having to fight to get the support I needed were all making me feel anxious and depressed.

There were times when I could barely get out of bed. There was one point when I got a two-sentence letter (about an MRI result that meant the world to me) that I had a mental breakdown. I don’t cry easily but I was in floods of tears.

But on the bottom of that letter, I spotted a phone number for a specialist nurse that no one had ever told me about and it transformed my life. I had a one hour appointment with her.

She listened to my concerns, my day-to-day struggles and I learnt more about my condition in that one hour than the six sessions I’d already had with the consultant.

I suppose now I’m used to having to push to be taken seriously. You learn to advocate for yourself with this condition. It feels like the NHS is currently all about immediate risk to life and that’s about it. Like how they deal with cancer.

But we need to recognise there are also other medical conditions that completely affect your quality of life – endometriosis is one of those conditions.  It affects 1 in 10 women globally. This is a common illness, yet we don’t prioritise it.

Overall the NHS is fantastic – when it works. But we need to acknowledge that dealing with Covid has meant many other patients have fallen through the net of care and treatment. The NHS has to go back to a bottom-up approach, focusing on and working for the people.”

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