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Endometriosis – the chronic condition that no one talks about

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I began the week once again, sat in the waiting area of the hospital preparing to see my consultant. We were in a new wing of the hospital this week, with a huge flat screen TV and new magazines to distract me and the other women waiting for our appointments.

Image credit: Endometriosis UK

On the outside we all look like perfectly well, healthy women, and I am – except I have endometriosis, a chronic condition for which there is no cure.

‘Endo’, as it’s affectionately called, affects 1.5 million women in the UK – that’s roughly one in ten women. Endometriosis happens as frequently as diabetes. So, I guarantee that you will know someone who has this. Endometriosis can affect all women and girls of a childbearing age, regardless of race or ethnicity, and there is nothing you can do to stop it developing.

When I was first diagnosed two years ago, it wasn’t a condition I had ever heard of and neither had my go-to person for advice on all things female - my mother. It would appear that I am not alone in my ignorance, and this is why March is Endometriosis Awareness Month.

Endo what?

Endometriosis is the name given to the condition where cells like the ones in the lining of the womb are found elsewhere in the body. Each month these cells react in the same way to those in the womb, building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape. Symptoms include crippling pain, fatigue and depression. Many women find it impossible to hold down a job or have a normal social life. Others are left infertile. Endo isn’t just painful periods; it’s a condition in a league of its own.

This month women (and men too) have worn yellow and taken part in walks, marathons and fundraising events. There were social media posts that went viral and articles like this one, published to encourage people to talk about their condition, to find support in others and most importantly for undiagnosed women to recognise their symptoms and seek medical help.

A number of well-known women, including Whoopi Goldberg, Susan Sarandon and the American singer Halsey,  as well as Emma Bunton and Katie Ford, have spoken out about the condition in an attempt to raise awareness, especially amongst young women.

Getting a diagnosis can be a huge challenge – I was told time after time that it was normal for women to be in pain, that I just had to deal with it. One ‘kind’ female doctor told me I was lucky to have paracetamol, and what did I think women in Africa could take? After each appointment I felt I was making a fuss about nothing.

For some women it can take up to seven years to obtain a diagnosis and treatment. If you are told for years that you are just making it up, you need to be stronger or you are attention seeking, then the impact on your mental health and wellbeing can be enormous.

My diagnosis came following admission to A&E one night in such pain that I couldn’t stand – it was as if a knife was being twisted inside me. It was my usually quiet husband who argued with the nurse and demanded I be taken seriously, and that we wouldn’t leave without something being done. Finally, I had a scan which confirmed I did have endometriosis. The diagnosis was a relief as it confirmed I wasn’t going mad, and initially I was so relieved that the thought of what would happen next didn’t worry me.

Every woman’s treatment path will be different, but it usually involves surgery. I am preparing for my third operation in two years. But nothing can happen without a diagnosis, and leaving it too late can be devastating if you want to have children.

So please believe, that if you have pain in your lower tummy or back, period pain that stops you doing your normal activities, pain during or after sex, pain when peeing or pooing during your period, feeling sick, constipation, diarrhoea, or blood in your pee during your period or are having difficulty getting pregnant  - none of this is normal, and you don’t have to ‘just get in with it’.

Go and speak to your GP about it. Don't wait. And if you GP won’t listen talk to another, and another, until they do. And if needs be, take someone with you to shout on your behalf until you are listened too.

If you need more help or want to read more about this condition, visit Endometriosis UK




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