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I don’t often talk about about endometriosis on my blog. I’ve mentioned a few times that I have it, but I’ve never actually done a blog post about it. This is partly because I find it hard to talk about, but also because I’ve been on treatment for the last 2 years which has really reduced my symptoms. Things have recently changed though – they’ve stopped my treatment and I am starting to notice symptoms again and I don’t like it. So the news I heard today, that MPs in the UK have launched an inquiry into endometriosis has been very welcome indeed. If you also have endometriosis, read this post to find out how you can help.
A few facts about endometriosis:
- 1 in 10 women (1.5 million) in the UK are affected by endometriosis.
- On average, it takes 7.5 years for someone to be diagnosed with endometriosis.
- 40% of women saw a doctor 10 times before being referred to a gynaecologist.
- It costs the UK £8.2bn per year in treatment, loss of work and healthcare costs.
- Many women say it impacts on their mental health, career, education, and sex life.
- Many women rely on prescription and addictive painkillers every month.
On 10 February 2020, MPs in the UK launched an inquiry to find out more about endometriosis and how it affects people living with it. This is with the aim of finding out what challenges people face and helping the government decide on what more needs to be done to ensure women get the care and support they need, at the time they need it.
Everyone with endometriosis is being urged to take part in the survey.
The survey – a little more info
The survey is hosted by Survey Monkey and can be found at https://www.surveymonkey.co.uk/r/APPGEndometriosis
It suggests it takes about 15 to 20 minutes to complete. It took me 20 minutes including taking some notes for this blog post. All answers will be kept anonymous, and you don’t have to answer every question if you aren’t comfortable doing so. It’s unlikely you will remember some of the detail they ask for, so best guesses are encouraged.
It includes questions about:
- How long before you were diagnosed.
- How many times you visited your GP and the hospital before getting a diagnosis.
- What treatment have you been offered.
- How long you had wait for any surgery.
- What would have improved your experience of getting a diagnosis for endometriosis.
- What would help you to manage living with endometriosis.
- The impact endometriosis has had on you and living your life.
- Has it impacted on your on mental health.
- Has it / did it impact on school life and education.
- Have you applied for disability financial support in connection with your endometriosis.
It also provides the definition of a disability:
The Equality Act 2010 lists very few diseases/conditions as disabilities as different people are affected to different levels, and to account for this the Act says you are disabled if:
- You have a physical or mental impairment
- That impairment has a substantial and long-term adverse effect on your ability to carry out normal day-to-day activities
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At the end, before the usual summary demographic questions, it asks if you want to provide any more information. I got a bit carried away but this was my chance to have my say:
“When I am in pain, it is so debilitating. I can’t leave the house until the pain and symptoms have subsided, which can take hours. I am physically unable to do anything and just have to lie down, with a hot water bottle, take whatever medication I can and try to relax to help ease the pain. This is not easy – it is mentally and emotionally draining and takes over your life. And things get much worse when the pain hits me when I am away from home, at work, or driving – I often feel faint, and have to rush back home as soon as I can. You can’t concentrate or do anything when the pain is bad. Imagine dealing with this every month, for over 20 years, and there being no end in sight.”
A report of the survey findings will be published in July.
References and further reading:
Will you be taking the survey?
Let me know what you think to this inquiry and the survey.
Do you want me to write more posts about my experiences of endometriosis?