Endometriosis: My life full of pain - BBC News
One in 10 women has it, but getting help for endometriosis is a long and difficult journey for most.
Amelia hopes that talking about her condition will help others

Endometriosis isn't just painful periods, it's a chronic condition in a league of its own.

One in 10 women has it yet, in the UK, it takes on average seven years to get it correctly diagnosed by a doctor - something experts want to change.

With endometriosis, tissue that behaves like womb lining is found in other bits of the body, causing nasty symptoms.

Amelia Davies was 12 when she got her first period. She soon came to dread her "agonising Auntie Red".

"At times it was so bad I couldn't go to school. I missed loads of days. The pain was really intense, with lots of different types - stabbing, cramping and burning. I was so bad I couldn't walk or get out of bed."

New guidelines for the NHS aim to reduce delays in diagnosis and save women years of unnecessary distress and suffering.

Amelia first explained her symptoms to her GP and then a few different doctors, but they couldn't find anything wrong.

"Finally, they agreed to send me to hospital for an ultrasound scan.

"So, there I am sitting in the hospital waiting room in full school uniform with dad laughing and joking about to try and keep me calm. It felt like people in that waiting room were giving me dirty looks, and assuming I was there for a pregnancy scan or something. I felt judged."

The scan revealed she had a cyst on her ovary, plus endometriosis.

When a woman with endometriosis menstruates, the misplaced womb tissue bleeds too, causing crippling pain and some rather unusual symptoms.

Some women pee blood at their time of the month. Others even cough up some blood if the rogue tissue is in their lungs.

Over time, the bleeding can irritate the body and lead to scarring or adhesions - tough cords of fibrous tissue that can cause more pain and make organs stick to each other and cause complications.

Amelia's doctor advised her to take an oral contraceptive pill to help alleviate her symptoms.

She currently takes the mini pill and hasn't had a period in two years.

But Amelia, now 18 and living in south London, says her endometriosis still causes her daily pain. She's been writing a blog about her experiences.

"Sometimes it can be really bad still. I get flare-ups and that's really difficult.

"I get the phrase, 'At least you're not dying,' quite a lot.

"I know it's said most of the time by good friends who are trying to be nice and reassure me. But endometriosis for me is the prospect of a long life full of pain. I sometimes feel like people are measuring my level of struggle against others' and that doesn't feel fair. It's daunting."

Caroline Overton, a consultant gynaecologist who helped write the new guidelines from the National Institute for Health and Care Excellence said: "There is no cure for endometriosis, so helping affected women manage their symptoms is imperative.

"As one of the most common gynaecological diseases in the UK, it is vital that endometriosis is more widely recognised."

Emma Cox, from Endometriosis UK, said: "The impact a delayed diagnosis has on a woman's life - her education, work, relationships and personal life - can be huge. On top of coping with the disease itself, women have to put up with being told, sometimes for years, that what they have is 'in their heads' or 'normal', when it isn't."