A woman who has been struggling with chronic endometriosis for over half of her life says NHS doctors refuse to operate because she is overweight.
Lauren Walker, 33, from Huddersfield, first saw a doctor for her painful symptoms when she was 16, and she has been fighting for help ever since.
The conditions mean that the endometrial tissue grows outside of the uterus lining, and into both the wall and muscles of the uterus – causing severe life-long pain and a range of debilitating symptoms.
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For Lauren this means she has been left unable to work and even a simple walk to the local shop can leave her bedbound for days due to the bleeding and pain that occurs. Lauren, who has also been diagnosed with autism, says her mental health struggles as a result of the condition and she has an ongoing battle with anxiety and depression.
She said: “I first went to hospital with severe stomach pains when I was 16. Initially they thought I had appendicitis but doctors never found anything conclusive.
“I was finally diagnosed with endometriosis in 2016. Initially I didn’t fully understand what it was because not many people talked about it back then, there wasn’t much understanding about it. But, I was also relieved that I had an answer to what the problem was.
“At the time I lived in London. I was advised to go on the mini pill to treat my symptoms, and later this changed to Progesterone only as it didn’t suit me. However, the hormones affected mood too badly and it didn’t work for me.
“Following this they did a laparoscopy. The surgeon told me it was worse than they first thought it was going to be. I was told it was very severe and invasive, it even showed up on an MRI because it was so severe, which is unusual.”
Lauren underwent her first surgery in 2016 following the laparoscopy, she says the surgeon was able to take some of the endometriosis away but wasn’t to touch the right ovary as it was too infected. She continued: “The surgery did help initially, my symptoms were relieved and I had more energy, but, it was short lived.”
Lauren started struggling again and in 2012 she moved back to her home town of Huddersfield to be near her mum, Sandra Walker. Mum, Sandra, said: “Lauren came home in 2021 and we started the process of referring her to the specialists again as she was struggling so much. She was sent to Pinderfields Hospital, who told us they wouldn’t do the surgery because she was overweight.
“The surgeon said she had a 2% higher chance of dying on the operating table than anyone else, at those odds we would be willing to take the risk to give Lauren some chance of a life. It was devastating, I was really angry, Lauren was devastated.
“They said they had a duty of care to keep my daughter alive, I asked if they had a duty of care to stop the pain and give her a life.”
Lauren is 5 ft 7 and currently around 19 stone. Sandra said: “They just said she needs to eat less, but she barely eats, she has one meal a day and sometimes on a really bad day she can’t even manage that. Part of the reason she is this weight is because the disease has left her unable to walk, or exercise, and often unable to even leave the bed.”
Following this Lauren suffered a mental break down and was admitted to a mental health facility. Despite her daily struggles, the endometriosis took a back seat whilst Lauren recovered mentally.
Sandra added: “Since then we have just left it because there were various other things going on with Lauren and her mental health and that became priority.” However, the symptoms only worsened.
Lauren said: “The pain has got worse, I am struggling more than ever with energy and mobility. I used to walk a lot, my local Sainsburys is 0.8miles away, I can’t even walk there anymore. If I do, for two days afterwards I can’t walk due to the severe bleeding and pain.”
Sandra said: “She manages to muster up the energy to go and meet her friend at the cinema once every six weeks and even that is too much. I don’t hear from her for days afterwards. It breaks my heart. I would take it away from her if I could.”
Sandra and Lauren started the process again at the beginning of 2023, this time they asked to be referred to Hull, rather than Pinderfields, hoping and praying for a different outcome.
Mum Sandra said: “We refused to go to Pinderfields this time, we told them what the surgeon had said previously and so Lauren was referred to Hull, we were told it could take anything up to 12 months. We finally got an appointment only to be told the same thing at Hull, ‘she’s overweight so we can’t operate’.
“Lauren got so upset she walked out crying. To me as her mum it’s traumatic to see my 33-year-old daughter in so much pain, I’m absolutely fuming. Lauren gets so upset about it. She’s in chronic pain, it’s stuck to her bowel, her bladder, it’s so extensive and nobody is willing to help her.
“She is refused surgery despite the fact her condition has been described by the same doctors as ‘extensive, deep penetrating and spreading’. She’s been on tramadol for five years, it no longer helps her pain.
“It affects one in 10 women and there is no support for people, nobody is helping us, she is in agony. I know the NHS is under strain, and I appreciate that, but when you see your own child suffering daily because of an outdated BMI policy it is just horrific. I’m beyond frustrated.”
Desperate to help her daughter live a normal life, Sandra has set up a Go Fund Me page as a last resort as she tries to raise the funds needed for Lauren to undergo the surgery privately. Sandra continued: “We are stuck, we don’t know what to do. I’ve set up the Go Fund Me to try go private.
“I’m not putting my daughter through all of that trauma again to get the same answer a third time. I’m trying to get my pension so she can get what she needs, I’m trying every avenue.
“I want to see her have the surgery she so desperately needs. She wants to go back to work, she wants to live her life; she wants to go hiking again, she used to do a lot of hiking.
“We know they might not be able to take it all. Worst-case scenario she might end up with a stoma and a urostomy, but at least she would have some energy. She wants a hysterectomy as it is the uterus that creates the problem.”
Sandra put the target goal down as £40,000 as it is unclear at the moment how much they will need and how many surgeries Lauren might require. But she has said anything over and above what they need will be donated to an endometriosis charity to help people like Lauren.
So far the mother and daughter have managed to raise £500, which is enough for Lauren’s initial consultation at a private clinic. However, without funds to carry out the treatment they are currently stuck between a rock and a hard place.
To donate to the fundraiser and help Lauren get the help she needs, click here.
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