"It's devastated my young life"

We're hearing from a University of York student who has endometriosis, ahead of a debate in Parliament later.

Author: Benjamin FearnPublished 1st Nov 2021

There are calls for more funding and research into endometriosis, as a petition with over 100,000 signatures is set to be debated in Parliament later today.

The petition says: "Endometriosis and PCOS are two gynaecological conditions which both affect 10% of women worldwide, but both are, in terms of research and funding, incredibly under prioritised. This petition is calling for more funding, to enable for new, extensive and thorough research into female health issues.

"Many women seldom get the medical attention they require, or frequently have their symptoms miscalculated.

"Due to personal experience, we are aware that the average time taken for a full diagnosis for endometriosis is 7 1/2 years in the UK.

"A cure for these conditions has not yet been found. It is important to us to start a conversation, to hopefully achieve funding to eventually find a cure for these conditions, or find more legitimate ways of treating symptoms."

The NHS describes endometriosis as "a condition where tissue similar to the lining of the womb starts to grow in other places, such as the ovaries and fallopian tubes.

"Endometriosis can affect women of any age. It's a long-term condition that can have a significant impact on your life, but there are treatments that can help".

It can cause a lot of pain and can leave women infertile without the right treatment.

Shannon Reed is a student at the University of York, and says endometriosis has massively impacted her life: "I was diagnosed last year just a few days after my 19th birthday, and it was something that I had been suffering with for about six years. My journey with it has been quite long and complicated; I'm one of many people on the NHS waiting list for surgery.

"It's something that's devastated my young life. I've gone from being a perfectly abled bodied teenager to now being a young adult that is stuck in a wheelchair. I have very poor access to NHS treatment, especially within the pandemic.

"It's an illness that once you're diagnosed you're told that it's something you'll battle with for life and can't be cured. Being diagnosed at a young age I'm aware of the fragility of the rest of my life, even though I've yet to experience two decades of that.

"Knowing that there is no cure I potentially have a future that is pre-destined to be full of treatments and operations that will have a massive impact on my body, but also on my economic and social life.

"It'll affect my ability to work and access education. It's really just devastating, regardless of how old you are".

Shannon says she's been well supported by the University in accessing support and research materials.

"The Department of Biology are wonderful at supporting people with disabilities and I've always found they've made it very easy for me to access that support when I want it.

"I was forced to take time away from uni last year because of my health, and fortunately because of the pandemic it meant that for a time living from home as a disabled person uni was accessible.

"Now that things have settled down a bit with the pandemic that could be taken away again, and it's quite hurtful for people with disabilities".

Shannon signed the petition last year and said it's not enough to just raise awareness of endometriosis

"What we just want now is action because as wonderful as it is to raise awareness, it's not enough for the people affected by it.

"1.5 million women in the UK are affected by endometriosis, and it affects the same number as women who are affected by diabetes or asthma, but the funding just isn't there.

"What we really want is funding into the research, into the treatments and healthcare, so that people can feel that this illness isn't going to take over the rest of their lives".

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