Pelvic Floor Muscle Training for Women with Myotonic Dystrophy
This study is investigating if special exercises for pelvic floor muscles can help women with Myotonic Dystrophy Type 1 who experience bladder leaks, also known as urinary incontinence. Myotonic Dystrophy can sometimes weaken these muscles, leading to leaks. While these exercises have helped many other people, they haven't been studied much in women with Myotonic Dystrophy. Researchers want to see if a 12-week exercise program, including sessions with a physiotherapist and home exercises, is practical and effective. They will measure if the leaks happen less often, if symptoms improve, and if it makes a positive difference to quality of life. The findings could help improve care for women with Myotonic Dystrophy who have bladder control issues.
At a glance
What is this study about?
Myotonic Dystrophy Type 1 (DM1) is a health condition that can affect many parts of the body, including muscles. Sometimes, it can weaken the muscles in the pelvic floor, which are very important for bladder control. When these muscles aren't strong enough, it can lead to bladder leaks, medically known as urinary incontinence.
Often, people might use pads or other ways to manage these leaks, but these don't actually fix the problem with the muscles. We already know that pelvic floor muscle exercises can be very effective for many people in stopping or greatly reducing bladder leaks. However, there hasn't been much research on whether these exercises are helpful specifically for women with Myotonic Dystrophy Type 1. This study wants to change that.
The main goals of this research are to find out two things: first, if these exercises are easy and acceptable for women with DM1 to do, and second, if they actually help improve bladder control. They will involve 12 women with DM1 who experience bladder leaks in a 12-week exercise programme. The results could really help improve how bladder leaks are managed for women living with Myotonic Dystrophy.
Key takeaways
- Targets women with Myotonic Dystrophy Type 1 and bladder leaks.
- Investigates pelvic floor muscle exercises over 12 weeks.
- Aims to improve bladder control and quality of life.
- Involves weekly sessions with a physiotherapist and home exercises.
- No previous studies have explored this treatment for DM1.
- Could help shape future care for this group.
Who may be eligible?
This study is specifically looking for women who have received a medical diagnosis of Myotonic Dystrophy Type 1 (DM1) and who experience bladder leaks – whether it's when they cough or sneeze, a sudden strong urge, or a mix of both. You also need to be able to understand and agree to take part in the study freely.
There are some reasons why you might not be able to join. For example, if you are pregnant, have given birth in the last year, or are planning to get pregnant soon, you won't be eligible. Also, if you have certain other medical conditions that could affect your bladder symptoms or how you respond to treatment, or if you have severe bowel incontinence or a significant prolapse (where organs drop down), this study might not be suitable for you. If you've already had physiotherapy for your pelvic floor or surgery in that area, or if you have a pacemaker, defibrillator, or bladder stimulator, you also wouldn't be able to participate. This is to make sure we're studying the effects of the exercises purely in this specific group of women.
Could this study suit you?
Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.
- Do you have a confirmed diagnosis of Myotonic Dystrophy Type 1?
- Do you experience bladder leaks (urinary incontinence)?
- Are you between 18 and any age, and identify as female?
- Are you not currently pregnant, haven't given birth in the last year, and don't plan to get pregnant soon?
- Have you not had physiotherapy for your pelvic floor or surgery in that area before?
- Do you not have a pacemaker, defibrillator, or bladder stimulator?
What does participation involve?
If you decide to take part in this study, you would follow a special exercise program for your pelvic floor muscles over 12 weeks. This program will include weekly sessions with a physiotherapist who has experience in this area. In addition, you will be given exercises to do at home. Before you start and after the 12-week program finishes, the research team will do some assessments. These will check things like how often you experience bladder leaks, any other related symptoms, and how much these affect your daily life. They will also look at the strength and function of your pelvic floor muscles and ask for your overall thoughts on the treatment. The total duration of your active involvement in the study would be around 12 weeks, with two assessment points.
Potential risks and benefits
Locations (1)
- Clinique des maladies neuromusculairesVerified postcodeJonquière, Canada· Recruiting
Common questions
What is Myotonic Dystrophy Type 1?
It's a long-term condition that affects muscles and can also have an impact on other body systems.
What are 'pelvic floor muscles'?
These are muscles that support your bladder, bowel, and womb, and they help control when you wee or poo.
What is 'urinary incontinence'?
This is the medical term for when you have accidental bladder leaks or difficulty controlling when you urinate.
Will I have to do exercises at home?
Yes, alongside weekly sessions with a physiotherapist, you will also have a programme of exercises to do at home.
How long will the study last for me?
Your active participation, including exercises and check-ups, will be for about 12 weeks.
How to find out more
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
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