Hope for Hull women living with ‘crippling’ invisible condition
LANDMARK REPORT TO HELP THOSE WHO SUFFER FROM ENDOMETRIOSIS
WOMEN in Hull living with endometriosis have welcomed a report into the condition and hope it will change the taboo surrounding it and educate others.
MPS in the All-parliamentary Group (APPG) have called the Government to action to support the 1.5 million people with endometriosis following the inquiry, which has highlighted the devastating impact the condition can have on those living with it.
The inquiry surveyed more than 10,000 people with endometriosis, interviewed healthcare practitioners and those with the condition about their experiences.
It found that it can still take an average of eight years to get a diagnosis, and prior to that diagnosis 58 per cent of people visited their GP on more than ten occasions while suffering with symptoms.
Ninety per cent of people interviewed said they would like access to psychological support, but were not offered any.
The APPG has called on the Government to make a commitment to reduce diagnosis times with a target of four years or less by 2025.
MPS are also calling on NICE to ensure that pathways for all locations of endometriosis are developed and implemented (right now, NICE guidelines only provide a care pathway for endometriosis within the pelvic cavity.)
An investigation into the barriers faced in accessing care for those from black, Asian and ethnic minority backgrounds has been called for to end the gaps in medical research. The APPG is only calling on the Government to invest in research to find the cause of endometriosis, better treatment, management and diagnosis options.
Women in Hull living with endometriosis have welcomed the report, saying it has been a “long time coming”
and will hopefully educate others on the condition after years of waiting for a diagnosis themselves.
Shaughna Mcclean, 27, was diagnosed just two years ago, but has been suffering with symptoms since she was 14.
Shaughna says she went to her GP with really bad period pain and was told she was “just having a bad period”.
She said: “I was always told it was just the usual and I was making it worse and it takes a bit of time for periods to settle. I was 12 when I started them, so I knew it wasn’t normal.
“I stopped going to the doctor’s after around three or four times.”
Shaughna says she went back to her GP when she was around 24 when her mum got diagnosed with the condition.
She said: “That’s the first time I had ever heard of it. I went away and googled it and was like, ‘This is me, this is my life’ and I went back and told them I had it. The GP said, ‘Well it’s rare’, but it’s actually not that rare.”
Endometriosis is the second most common gynaecological condition in the UK and affected between two and ten women out of 100.
It occurs when bits of the tissue that lines the uterus grow on other organs, such as the ovaries or fallopian tubes, often sticking them down, making the condition painful.
It can often go undiagnosed for years, with many women suffering with the condition being diagnosed with IBS, bad periods, sciatica and other conditions.
Those eventually diagnosed are recommended to undergo laparoscopies, a surgical way of removing the endometriosis.
Although some say it alleviates the symptoms for a time, the endometrio
sis has grown back so they have to have further surgery, sometimes resulting in a hysterectomy.
Shaughna says that after a such a long time trying to get diagnosed, she still cannot believe it.
She said: “Multiple times I went to work in crippling pain and could barely walk around, but I still went because in my head it was just a bad period, which I think it comes down to the number of years I’ve been in such bad pain and being told it was just a bad period.
“When you’re 14, you’re still in your formative years and because I went through that thinking I was making it up it’s taking a long time to get used to that I’m not.
“In the report, the thing that really upset me is the fact 90 per cent of people would like psychological help. It’s about time the report happened.
“It’s a good start, but there is so much more that needs doing.
“There are recommendations that we are just waiting to happen. We need to make these suggestions tangible and make sure they happen.”
Gemma Constantine, was diagnosed with endometriosis in 2014.
She says she thought the period pain she had when she was younger was normal, so did not go to her GP, and as she was able to become pregnant – where most women with endometriosis struggle – she did not realise she was suffering from the condition until a bad period where she would “not stop bleeding”.
She said: “For a long time I thought I was having an ectopic pregnancy, I was bleeding that much, and it was only when I went to the GP they started investigating and I was diagnosed.
“I’d never heard of it before, and didn’t know much about it until I was diagnosed.
“It was good to know that it wasn’t all in my head and I wasn’t just being a 39, wimp with the pain and that someone had listened to me.
“I’ve had three laparoscopies and a hysterectomy and another laparocopy after that and I’m waiting for another.
“The hysterectomy helped, but it [the endometriosis] still came back. It’s hard to keep going through so many surgeries for it to keep coming back.
“I’m averaging at a surgery of every other year. After your surgery you get discharged from gynaecology and then if it comes back you have to go back to your GP and get referred again and it all starts again.”
Gemma says endometriosis is still “taboo” and the report will hopefully get knowledge about it “out in the open”.
She said: “Women’s health is such a taboo subject and this has been a long time coming. It is getting better. I’ve been for a scan this week and the person doing it was a specialist sonographer who only deals with endometriosis and that is the first time I’ve seen that.”
Dr David Amess MP, chair of the APPG on endometriosis, said: “The report provides a stark picture of the reality of living with endometriosis, including the huge, lifelong impact it may have on all aspects of life.
“It is not acceptable that endometriosis and its potentially debilitating and damaging symptoms are often ignored or not taken seriously, or downplayed as linked to the menstrual cycle and periods.
“All UK governments must take the recommendations in this report seriously and act to ensure that everyone with endometriosis has a prompt diagnosis, along with access to the physical and mental health support they need to manage their condition.
“The APPG will not rest until tangible improvements are delivered to all those who suffer from this condition.”
Multiple times I went to work in crippling pain and could barely walk around
Shaughna Mcclean