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Endometriosis: The condition that can take more than seven years to diagnose
More than 13,500 women participated in BBC research, revealing the devastating effect of endometriosis.
Half said they had suicidal thoughts and many said they rely on highly addictive pain killers.
Most also said that endometriosis – involving painful periods – severely affected their education, career and relationships.
Parliamentarians should initiate an investigation into women's experiences with endometriosis after the survey.
Women with the condition answered questions about how the condition affected them. The Endometriosis UK charity helped to gather the answers.
The condition affects one in 10 women and, in addition to extremely heavy periods, can cause debilitating pain and sometimes infertility.
Bethany Willis, who lives in Essex, was one of the people who participated in the survey. She began to have symptoms of endometriosis at the age of nine.
She knew what it was because her mother and grandmother also had the disease.
Now 19, Bethany says, "Pain is like barbed wire wrapped inside and someone pulls it while at the same time an animal is trying to get past you."
At one point she felt so much pain that she overdosed.
"I texted my boyfriend and said goodbye. I was ready to end my life there and then because of the pain."
She was finally diagnosed this summer after surgery and – although she still feels daily pain – is managing to cope.
"My mind is clearer and I have more energy, but the years of not being treated mean I had to drop out of veterinary school and the career of my dreams," she said.
Anna Turley MP, a member of the Parliamentary Endometriosis Group conducting the survey, said: "It wasn't until I was hospitalized and diagnosed that I realized how little attention endometriosis gets, how limited research funding is, and how many women. are misdiagnosed ".
She said the data gave "voice to millions of affected women" and the APPG called on the government to act.
Tayla Marshall is addicted to strong opioid drugs
Tayla Marshall, 24, from Northamptonshire, is one of the people relying on pain relief to deal with her symptoms.
She has undergone several operations and two chemically induced menopause and is now addicted to strong opioid medications.
"I worry about my opioid intake every day. I take 50 ml of morphine sulfate, fentanyl patches, naproxen and 30 mg amitriptyline, and although it's not addicted to my mind, my body is physically dependent on it now."
"If I spent a day without him, I would start to feel unpleasant withdrawal symptoms."
Because her condition is so serious, Tayla is considering having a hysterectomy when she is 30 years old.
"I have six years to try a family," she said.
"But my last relationship ended because of the impact of endometriosis. I wasn't able to be intimate with my partner very often unless I took medications."
"I'm also in a position where I reduced the chances of getting pregnant naturally and carrying a baby.
"I kind of understood my idea of having no children, but it breaks my heart every day."
What is endometriosis?
- This is where tissues like this in the lining of the uterus grow in other parts of the body – usually around the reproductive organs, intestines and bladder.
- Like the lining of the uterus, the tissue accumulates and bleeds every month, but since there is no escape from the body, blood gets trapped, causing inflammation, pain and scar tissue formation.
- For some women there are no symptoms, but for others it is debilitating and can cause• chronic pelvic pain, painful sex, painful bowel and bladder movements, fatigue and difficulty getting pregnant
- There is no cure, but treatments can reduce symptoms.
- They include hormonal treatment, pain relief and surgery – including hysterectomy.
- In the UK it takes an average of 7.5 years to be diagnosed.
Emma Cox, CEO of the charitable organization Endometriosis UK, which helped gather women's testimonies, said: "One cannot overstate the devastating impact that this condition is clearly having on people's physical and mental health.
"Without investment in research, a reduction in diagnostic time – which lasts an average of 7.5 years – and better access to pain management, women will continue to face huge barriers to getting the right treatment at the right time."
Some women choose to undergo a hysterectomy and early menopause in an attempt to stop their symptoms.
Michelle has had surgery recently to end her symptoms
West Yorkshire's Michelle Middleton, 42, recently underwent surgery to remove her ovaries, uterus, fallopian tubes and cervix.
She says it's her last hope: "I just want to get rid of everything," she said.
But she added, "The risk is that I am no better and there is damage and worse, but you must have hope."