A new survey by the MS Society has found that up to a third of patients avoid or delay seeking treatment because they feel embarrassed about their symptoms.
A new survey carried out by the MS Society has found that up to a third of patients avoid or delay seeking treatment because they feel embarrassed about their symptoms. Multiple sclerosis (MS) can cause a wide range of symptoms, including fatigue, poor coordination, memory problems, bladder control problems, and sexual dysfunction.
The survey was carried out as part of MS Awareness Week 2024, which took place at the end of April. This year, the MS Society has focused on highlighting those symptoms of the condition that can be difficult to talk about, in an effort to break taboos and empower people to speak up.
The survey of 1,400 people found that 85 per cent of respondents found one or more of their MS symptoms embarrassing. More than half (59 per cent) were embarrassed about bladder problems, while 27 per cent felt embarrassed about sexual dysfunction. Just under half (49 per cent) of respondents felt embarrassed about walking issues such as wavering.
The survey also revealed that 22 per cent of respondents keep their symptoms hidden from partners, while some 49 per cent would not feel comfortable discussing a sexual dysfunction problem with a healthcare professional.
Kerry Riches, a reality TV star who took part in the last series of Big Brother, lives with relapsing MS and has spoken about her experiences of bladder and bowel problems. She is working with the MS Society as part of their MS Unfiltered theme, to help normalise talking about issues that many people find sensitive or uncomfortable to talk about.
Kerry says: “While bladder and bowel issues will always be slightly embarrassing, for many of us living with MS it’s just something we have to come to terms with.”
My bladder is rubbish, if I sneeze I wee, I never go anywhere without a spare pair of knickers and I’ve been wearing pads since I was 24 because I am constantly weeing or leaking. I’ve even wet myself on a plane before. I’ve teamed up with the MS Society on this campaign as I want to show the unfiltered side of MS and show others that they are not alone.”
It is estimated that there are 130,000 people in the UK living with MS, which is an autoimmune condition that affects the nerves in the brain and spinal cord. It’s almost three times more common in women than men, and is most often diagnosed when people are in their 20s or 30s.
It is not inherited, although there is a slightly higher risk of developing MS if you have a family member with the condition. The symptoms can be wide ranging, because it affects the central nervous system that controls every movement of the body.
Most newly diagnosed people report symptoms such as fatigue, difficulty walking such as tripping, stumbling, or a heaviness in the legs; eyesight problems; unusual sensations on the skin such as pins and needles or numbness; and difficulty with memory or concentration. It can also cause the aforementioned bladder, bowel, and sexual function problems.
Dr Panna Muqit, an NHS GP and Honorary Senior Lecturer at the University of St Andrews, explained to the MS Society:
“I speak to many patients living with MS and understand the difficulty in discussing challenging symptoms with your GP. Sharing your symptoms can prevent the problem from escalating by allowing the exploration of new treatments, or adjustments to your diet or lifestyle.”
In addition to your GP, there are other healthcare professionals, such as an MS nurse, an incontinence specialist, or a neurologist, who can assist you with potentially embarrassing MS symptoms.”
“It’s crucial to remember that you are not alone. I strongly encourage patients to engage with others who are experiencing the same symptoms through support groups or MS charities.”
The MS Society runs a free helpline for MS patients to seek advice and support, and there is a wealth of useful information available on their website. There are several ways of managing the various symptoms of MS, and healthcare professionals are trained to identify the best approaches for individual patients.
For more information about the treatment of multiple sclerosis and Gamma Knife surgery, please contact Mr Jonathan Hyam of Amethyst Radiotherapy.
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