‘I’m in so much pain my body reacts and it shuts off .... I just collapse and have a fit’
The agony of endometriosis has left one woman virtually housebound. Laura Clements reports
JULIETTE ANDERSON has been in agony on an almost daily basis for half her life, the pain so intense it causes her to collapse and have seizures on her bathroom floor.
Her hands and face are covered in scrapes and bruises where she has knocked herself during her frequent non-epileptic fits – she’s had three in the past week alone.
She rarely leaves her home in Cardiff and spends hours on the sofa with a hot water bottle pressed to her tummy in a bid to relieve the excruciating pain.
Her husband Mark has done his best to adapt the house so she doesn’t bang her head, but for the most part he can only look on helplessly as her body goes into another violent seizure.
Juliette has endometriosis, a little-understood condition that affects one in 10 women in the UK.
Put simply, endometriosis is a condition where cells similar to the ones in the lining of the womb are found elsewhere in the body, forming lesions, cysts and other growths.
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, however, this blood has no way to escape – causing chronic and sometimes debilitating pain, as well as affecting fertility and other parts of the body such as the bowel or bladder.
Each case is different. There is no cure. Those who have it have to learn to live with it. The pain may briefly lessen, but it is only a matter of time before it comes back with a vengeance.
Juliette wasn’t diagnosed until she was 42, after she’d had two children, four miscarriages and a failed hysterectomy.
“It was very late, considering my history,” Juliette said.
“I had my daughter and then I had four miscarriages and they told me I couldn’t have any more kids, but they didn’t actually look into anything or find out why. They just said it’s highly unlikely you’ll be able to carry but now looking back, it was obviously endometriosis.”
Juliette had always thought there was something wrong with her. Ever since her teens, she had “ridiculously heavy” periods that would last two or three weeks. Things got a lot worse after she had her first child, Becky, when she was 18. She started passing out from pain so severe it caused her to have seizures.
“I always had heavy periods but I was told it was normal,” she said. “It got a lot worse after Becky and then the passing out started.”
She was sent to epilepsy clinics but tests came back negative and doctors told her she was having non-epileptic seizures brought on by pain. Then they sent her on her way.
But Juliette, who had son Joshua six years after Becky, knew something wasn’t right.
“I kept going to the doctors and I was crying, saying I needed a hysterectomy. I can’t cope with my periods, and they said: ‘Are you having any stress at home, is it all in your head?’
“But you doubt yourself then, I got really bad, and depression hit.”
With the support of her husband Mark, whom she met when she was just 16, she kept pushing for doctors to carry out a full hysterectomy.
“When they said they would do it, I cried because I was so happy,” she added. “I finally thought there was light at the end of the tunnel.”
After doctors reluctantly agreed to perform a full hysterectomy in 2014, Juliette came round from the operation to be told they hadn’t managed to do it after all. The surgeon had discovered her womb was riddled with endometriosis and it had spread to her bowel. He needed the help of a bowel surgeon.
She was 42 years old and had no
idea what that meant.
“When I was first diagnosed I’d never heard of it,” Juliette recalled.
It was another 12 months before she had a full hysterectomy and she is now waiting for another operation to remove a large section of her bowel which has been damaged beyond repair. It’s not endometriosis that causes Juliette’s fits, but the excruciating pain that goes along with it.
“I get non-epileptic seizures, which is related to the pain,” the 49-year-old grandmother said.
“When I’m in so much pain my body reacts and it shuts off and I just collapse and have a fit. The endometriosis has damaged so much of my bowel they can’t just cut that bit out. It’s like a cancer, the way it spreads.
“Nine times out of 10 I have a fit when I’m on the toilet when I’m opening my bowels and the pain is so severe I just end up on the floor. There’s no warning: it just comes on.”
The operation, which will see a large part of her bowel removed and replaced with a colostomy bag, has been delayed because of the coronavirus pandemic. Juliette says the procedure would have been completed in March last year otherwise.
“The last year has been terrible – the pain is a lot worse,” she said. “I’m having two, maybe three, fits a week. I’m always marking my face.
“The pain is just constant, it never goes. I’m taking morphine and I sit here with hot water bottles on my stomach, which does relieve some of the pain.”
It’s not just the pain that affects Juliette but everything that goes along with it, including her own mental health and any chance of intimacy with Mark.
“The kids are grown up now, this is our time,” she said.
“We should be enjoying our life now, but we haven’t even slept together for six months. I’m lucky
I’ve been with him for so long, for him to understand these things. Because the pain is so bad, he says he won’t put me through it.”
Her condition is almost as bad for Mark, she thinks, because “he watches me day in day out”.
“He’s got to deal with me on the floor and there’s nothing he can do to help,” she added.
“He’s just got to step over me when I’m on the floor.”
Normal life is out of the question and she can’t look after her two grandchildren, who are six and two, on her own.
“I haven’t got a life, I’m just existing,” she said. She gave up work in her twenties after the pain and seizures got too much.
“I don’t go out, I can’t even have my grandchildren if
I’m on my own in case I collapse. They’ve been here when I’ve had a fit. The eldest is good – she just moves my head, checks I’m OK, gives me a kiss and says ‘I’ll just go and get mummy.’”
For now, Juliette is pinning all her hope on the operation that will leave her with the colostomy bag: “Even if I’m half as pain free, that’ll be a bonus,” she said.
“After the operation I will have a better quality of life, maybe even get a little part-time job or take the kids to the park.
“I’ve got to just keep thinking that – that it will be for the better. I’ve got no choice really.”
Juliette runs a Facebook support group for fellow sufferers which has more than 2,000 members all over the world.
“We just want to be believed,” Juliette said.
“People say, ‘Oh you’ve got a bad period, so what, it’s normal.’ But it’s not normal. You look OK on the outside but on the inside it’s not.”
The Charity Endometriosis UK said that women in Wales were waiting on average for nine years for a diagnosis, which compares to a UK average of eight years.
It also said women were now having to wait longer because of delays related to coronavirus – but said a greater awareness of the condition from a younger age could help reduce diagnosis times.
Member of the Senedd Suzy Davies, who was diagnosed with endometriosis in her late 40s, has called for the topic to be compulsory in schools and this week tabled an amendment on Menstrual Wellbeing in the Curriculum and Assessment (Wales) Bill. A previous amendment was rejected by a majority of the Children, Young People and Education Committee.
Fair Treatment for the Women of Wales, a patientled women’s health equality charity, has been campaigning for menstrual wellbeing education in Wales for the past two years and is urging the Government to act.
In a statement, the group said: “We believe that menstrual wellbeing needs to be on the curriculum in Wales to ensure that we overcome taboos and misconceptions which see periods and associated issues like heavy bleeding and pain either go unspoken or dismissed as being ‘normal.’
“Far too many pupils are not getting the best out of their education as a result of their periods, and future health and prospects are also affected.”
I don’t go out, I can’t even have my grandchildren if I’m on my own in case I collapse
THREE schools have been given the go-ahead to expand and improve their buildings as part of a multi-millionpound transformation.
Permission has been granted for Rhondda Cynon Taf (RCT) council’s major school investment plans at Ffynnon Taf Primary in Taff ’s Well, Cwmlai Primary in Tonyrefail and Ysgol Gyfun Rhydywaun in Penywaun, near Aberdare.
The three applications were considered and approved by the council’s planning and development committee last Thursday.
The schemes will enable the capacity of the respective schools to be increased in response to local demand, while also providing staff and pupils with brand new facilities.
The go-ahead will see a detached extension block including four classrooms and a school hall built at Ffynon Taf Primary School.
This new building will replace the school’s three temporary classrooms, and will be used permanently alongside the existing Victorian-style building which has recently received interior upgrades.
The scheme will increase the school’s capacity, a requirement due to the nearby housing developments, and will be delivered via a total investment of more than £3m – using a £1m contribution from Welsh Government’s Community Hub Capital Grant, and a contribution from the Community Infrastructure Levy.
The application was recommended for approval by Officers, who noted in a report that it complies with the relevant policies of the Local Development Plan, and that the development would “contribute to building strong and sustainable communities” while providing improved facilities for the school.
A unique element of the scheme is the Taff’s Well Thermal Spring Heat Network Project, which proposes to use Wales’ only natural thermal spring as a source of low-carbon heat for the heating systems of the new school block.
At Cwmlai Primary School,the plans include a new single-storey, threeclassroom extension – including new toilets, a plant room and storage areas.
It also comprised of a new multi use games area and four extra car park spaces.
The new building will provide a new home for the two existing childcare settings, which currently have limited space.
The school also needs expansion to cut pressure on facilities – and a flexible space will be provided for use in school hours and after-school clubs.
The application was recommended for approval by officers, noting that it will provide improved teaching, childcare and physical education facilities.
At Ysgol Gyfun Rhydywaun, meanwhile, the plans include demolishing the current caretaker’s house and building teaching and sports facilities within the grounds of the existing school.
These include a new eight-classroom block with community rooms, drama and music facilities, along with a new school reception, sports hall, fitness
suite and changing rooms.
The community will also be able to access some of these facilities, with segregation from pupils ensured.
A new parking area with 45 additional spaces will be included, along with a cycle store.
The £12.1m plans will benefit from 65% funding from Welsh Government via its 21st Century Schools and Colleges Programme, and will boost Welsh-medium places provided at the school by a total of 187 – from 1,038 to 1,225.
The application was recommended for approval, with officers noting the
increase in capacity, improved school environment, provision of muchneeded community facilities and onsite parking to address an existing shortfall.
The scale and design of the proposals was also considered to be appropriate.
Joy Rosser, the council’s cabinet member for education, said: “With full planning permission now granted, the council can make further progress on all three projects towards their delivery on site. I look forward to seeing this further progress being made in the coming weeks and months.”
PRESSURE is mounting on the Vale of Glamorgan council to drop controversial plans to build a supermarket in Cowbridge.
The supermarket and car park is planned on the site of a 200-year-old livestock market, which was recently demolished.
The Vale council closed and demolished the livestock market last year. This left farmers struggling to make any money from selling animals, due to the long distance they now have to travel to the nearest livestock markets in Brecon, Carmarthen or Monmouthshire.
Now politicians and campaigners are calling on the council to drop the plans, consult with the local community, and open up a replacement livestock market. The council has been promising for years to replace the market, but a replacement “is still in discussion”.
Andrew RT Davies, MS for South Wales Central and leader of the Welsh Conservatives, said: “The livestock market was a key part of the heritage of Cowbridge as a traditional market town. The Labour-run council went ahead with demolition without a plan, and now they’re left trying to find a new use for the site.
“The last thing local people and businesses want to see is another supermarket, and anyone who knows anything about rural communities would know this. Unfortunately, the council is clearly lacking in this regard.”
Jane Hutt, Labour MS for the Vale of Glamorgan, said she would raise concerns about the proposals to the Vale council, and described the recently demolished livestock market as a “key feature” of Cowbridge.
She said: “I have supported a number of community enterprises and partnership proposals to secure the long-term future of the market for all those who have an interest. This includes farming, chamber of trade and businesses which are the heartbeat of the town.
“Proposals for a community hub, market space and car parking for businesses and visitors have been supported locally. Consultation about the latest plans is vital and I’m grateful for the feedback from the chamber of trade and local community who raised strong objections.”
After the plans were revealed, a campaign group quickly formed to urge the Vale council to consult the community in Cowbridge on what would be best for the town. The “No to a Supermarket” campaign warned the plans could damage local businesses.
A spokesman for the campaign said:
“The announcement was released with shock from business owners who had no prior warning, especially those in the Cowbridge chamber of trade who were particularly aggrieved at the decision.
“Local business owners simply want parking on the cattle market in order to support the high street. They believe another supermarket will damage their business, which has already been massively impacted by the pandemic and restrictions. We can’t seem to understand the council’s perspective, especially when they know the damage a supermarket will do to the already battered high street, which Cowbridge is famous for.”
Council leader Neil Moore responded to the concerns, saying: “There is clearly an unprecedented need to support and create jobs and where possible strengthen the retail offer of our town centres, and the current proposals do just that.
“It would also be environmentally sustainable, reducing the need for residents of Cowbridge and the surrounding villages to travel further to Bridgend or Cardiff for their weekly food shopping.
“A prospective developer [will need to] prove there was enough capacity in Cowbridge to warrant such a use without harming the town centre.
“This is a great opportunity to boost Cowbridge’s economy, enhance the local environment and deliver a major investment serving the needs of the wider community.”
The Vale council has commissioned consultants PER Consulting to look at replacing the livestock market. A spokesperson said the sheep market was “not sustainable” and the “time had come” to regenerate the land. Discussions on a replacement are ongoing.
The council spokesperson said: “The sheep market was originally due to close at the end of March 2020 following the end of the market operator’s lease; however, due to the ongoing pandemic, the operators were granted a monthly extension of the lease until September. Demolition then began on site.
“It was clear to the council that the sheep market was not sustainable, as identified in the original PER report. The council felt that the time had come to secure the regeneration of this important location, which would include additional parking for the town centre and significant improvements to the site surrounding the historic town wall known as the Butts.
“The council hopes that, regardless of the decision to close the market, stakeholders still see a need for a fit-for-purpose facility in the future and is committed to working with partners to take this forward to the next stage.”