My daughter Nataly is having a truly awful time right now.

She suffers from life long pain, fatigue and fainting due to her Ehlers-danlos syndrome which affects her every day life, she never complains she just tries to cope and live a limited life helping others with the condition and advocating for disability rights whenever she can. Despite spending so much of her adult life in hospital and has already had several surgeries.

In November 2025 she suffered from a severe episode of gastroparesis, this is a symptom of EDS which causes paralysis of the colon - unfortunately this episode was exceptionally bad and led to severe nerve damage in her pelvis - a diagnosis of Pudendal Neuralgia, which is causing unimaginable acute pain. The condition is know as the suicide illness by the medical profession as it is so debilitating. In the 14 years she has been ill I have never seen her in this much pain and it is utterly heart breaking. She is on really strong opioid pain killers which cause her to be spaced out most of the time and she is vomiting, losing weight and getting weaker each week this goes on. The damage is affecting her ability to use the toilet and she has been relying on catheters and enemas as going to the toilet is so painful. She has been referred to pain management but the wait is months. Which brings me to now. A couple of weeks ago she had a smear test to rule out anything sinister as her symptoms can overlap and last week she was delivered the devastating news that she has cancerous cells on her cervix, we are in utter shock and can't believe she is having so much bad luck her mental health is at an all time low. She will need urgent surgery to remove and grade the cancerous cells we have been told it has been caught early and hopefully will only need an operation.

The operation is booked for 7th May but as she is so weak right now we are really worried about how she will cope with this and she is terrified of the thought of recovering from surgery on her vagina whilst also in excruciating pelvic pain.

There is an option however to have a series of nerve blocks to numb the pain from the nerve damage and we have found a doctor in bristol who can fit her in. He advised a course of three blocks, The cost for three injections will be around £6000.

A family member has kindly agreed to pay for the first round, so we therefore are trying to raise as much money as we can, as quickly possible to get the further 2 treatments asap so she can cope with the operation.

As Nataly was born with 2 cervix the surgery is likley to be more complicated .

If we can get the injections done before the surgery it will hopefully make the process somewhat bareable. This isn't a permanent cure for nerve damage and she will still need to wait for nerve decompression surgery on the NHS but it will allow her to travel to London for the cervical surgery and recover without the unbearable nerve pain.

We are asking for help to raise £2000 to help towards the costs associated with the second injection. So we can hopefully get them before the beginning of May.

Many thanks Hayley and Nataly xxx