Advice on how to cope with incontinence from a su
Advice on how to cope with incontinence from a sufferer
Tips on Managing Urinary Incontinence
The key to successfully managing UI involves the combination of several factors, which include some of the following:
Although trying to put a positive spin on living-well with continence difficulties may appear easier said than done, it is important to remember that millions of people live and cope with the issue each day, and through careful planning and management it is possible to ‘live well’ with the condition.
Managing and Planning
It can be extremely annoying and frustrating to realise how much time can be taken up dealing with and managing UI. It can also mean that the condition reduces your ability for spontaneity in your everyday life. However, taking a little time to consider the best way to manage your condition in your particularly circumstances, can really make the difference between managing UI well or struggling with the issue daily. Again, noting down any concerns or issues you may be struggling with, can help you plan strategies to help mitigate these. These needn’t be complex or technical but could involve simple solutions such as identifying the location of the nearest toilets or planning toilet breaks.
Food and Drink
It may be obvious but what you eat, and drink can have a significant effect on your continence. Therefore, you may want to consider cutting out drinks or food that are diuretics or bladder irritants. These can include items such as caffeinated drinks like tea and coffee, or cola. In addition, alcohol can also be problematic, along with carbonated drinks and some fruit juices (such as orange, lime or grapefruit) ( Johns Hopkins). Many people are also tempted to restrict their overall fluid intake, to prevent too many visits to the loo or possible ‘accidents’, however this can be counter-productive and irritate your bladder further, as well as leading to potential dehydration. In addition, many foods can also irritate the bladder, particularly those that are regarded as ‘acidic’ such as tomatoes, as well as spicy foods.
But don’t become too hung-up on such lists or restrict everything, and if you do fancy a specific food or drink, having something now and again is perfectly ok, but just be aware of its potential for irritation. There are numerous websites offering detailed information on this, but one helpful site is from the Mayo Clinic in the US, which is a well-respected health care organisation.
Toilets and Toileting
Again, this may seem rather obvious or a little condescending to be highlighting toilet use. But using the toilet, finding accessible loos particularly when out or about, and how often you go, are all important factors in maintaining continence. The latter issue is especially important, because going too often or holding on for too long, can have a big impact on your bladder and its ability to hold urine. For further information, please refer to this helpful website: Toilet Map UK.
Friends and Family
Talking to friends or family about your condition can really make a big difference, and although this may appear daunting, it can pay dividends in the long run. Our experience in this area shows that people that have shared their condition with others, feel happier and relieved that they have told someone, and are often pleasantly surprised by peoples concern and kind reaction. In addition, having people around you that know about your condition can be reassuring, particularly if you have problems, as they are then in a better position to offer you emotional and practical support.
Devices, Pads and Pants
For many people, the thought of having to use any sort of device or pad to manage their continence difficulties, represents a big step. This is also not helped by jokes around such products and those slightly annoying adverts for ‘incontinence pads/pants’ regularly seen on TV these days. But although they should never be seen as the only answer to dealing with UI, and it is always advisable to seek advice from health care professionals first, containment products (such as pads and pants) do have a useful role to play. As they can enable individuals to remain ‘socially continent’ and get on with their lives, without other people being made aware of the problem. However, there are a wide range of different products available, and it can sometimes be very confusing to know what ones to choose, therefore seeking professional advice can be helpful. In addition, there is a great deal of information available on the Web, often from the manufacturers themselves, which is obviously helpful but means that finding truly impartial advice/information can be difficult. But online resources such as Southampton University/International Continence Societies excellent ‘Continence product advisor’ Website, offer in depth impartial advice and information . Click here for the link.
Simple changes can often mean a big improvement
Dealing With Incontinence In The Workplace
Many of the estimated 3 to 6 million people in the UK that have bladder control problems, live busy and fulfilled lives, and this includes work. However, the latter can present additional challenges, but should not prevent people from achieving their goals. Of course, work takes many forms, and the advice for an office worker, may not be applicable for someone who works mostly outdoors. In addition, there are some jobs, such as taxi and lorry drivers, till or call centre workers, and even professions such as nursing, where it is often difficult to find time to stop to use the bathroom. And although the right to take adequate toilet breaks is enshrined in UK employment law, many people will be familiar with the experience of over-zealous bosses or work colleagues making comments about individuals having too many ‘comfort-breaks’.
Again, depending on your situation, it may be helpful to confide in close colleagues at work or your boss, about your difficulties and needs. From our experience, in most cases people are very understanding and accommodating and remember you are unlikely to be the only person with continence issues in your workplace.
But, understandably, many people don’t wish to share their personal health problems with colleagues at work. And in which case, practical measures can take some of the stress away for you.
Knowing where the toilets are, can be an essential strategy to managing your condition. If you have a locker at work, it may be helpful to leave spare clothes or pads there, as a just in case measure. Along with an ‘emergency kit’, consisting of wipes, disposable bags, spare underwear, cleansing products, and room freshener. And if you want to avoid people noticing, having two sets of matching trousers/skirts can be a useful strategy. Alternatively, you could wear darker clothing that can help hide damp/wet patches, if things go wrong. People often worry that others will notice wet patches or odour, but from our experience speaking to many individuals, even when things have ‘gone wrong’, most people don’t notice, because they are too wrapped up with their own lives. Anecdote: Michael (not his real name) remembers having leakage at work, and while he was acutely aware of the issue himself, he realised that his work colleagues didn’t notice and he was able to go to the bathroom and change/clean up without anyone finding out.
When away from home, including your workplace, it can often be tempting to restrict fluids if you have bladder problems but doing this regularly can be bad for your long-term health, and dehydration can cause lack of concentration and lead to headaches and exacerbate bladder irritability. Many modern offices have air conditioning, which can make dehydration more likely, therefore drinking water is important. In addition, if everyone is making tea or coffee, it can be useful to consider switching to decaf versions, as caffeinated drinks can make some people need to pass water more often. Of course, if you are doing strenuous manual work, keeping rehydrated is very important. If you have to do a lot of travelling for your job, and are worried about regular access to toilets, it may be advisable to consider using larger more absorbent pads. If you have difficulties it can prevent embarrassment, although, disposing of pads in workplace toilets, or when on the go, can often be tricky. Carrying around scented plastic bags, and a larger handbag or men’s work bag/rucksack, may be useful to store used pads, until they can be disposed of in a suitable place.
The key to managing well in the workplace is being well prepared, planning for all eventualities, and if applicable, being open with your colleagues. Click here for further useful advice.
Your employment rights, speaking to your boss and raising the issue with colleagues.
Telling Friends and Family
Unfortunately, due to the nature of continence problems they are often viewed as a private matter and not something to be discussed. As a result, many people with these difficulties end up suffering in silence. Yet as the old proverb goes, ‘A problem shared is a problem halved’.
Of course, you may not always want to share your difficulties with friends and family, even close loved ones, and that’s perfectly OK too. But from our experience talking to people from a wide range of backgrounds, many individuals experience a great sense of relief and comfort from being more open about their difficulties with family and friends.
We appreciate that sharing such information is not always easy. Many people report finding it easier to share such information with comparative strangers and individuals not directly connected with them, such as health care professionals, than close friends and family that they have known for years. With many citing worries about how people will react, as reasons for not discussing the issue with them.
Of course, in choosing to tell or disclose this information, it is entirely at your discretion. Ultimately, you know your family and friends best, and therefore are the best judge of who you are happy discussing this with and who you trust. However, from our experience talking to a wide range of individuals, few people regret telling family and friends of their difficulties. In fact, many people report feeling overwhelmed by the support and kindness shown to them. Again, it is entirely up to you, and you should never feel pressurised into divulging private health matters, unless you feel entirely comfortable.
Even if you never mention the problem again, if you do experience continence difficulties when that person is around, the fact that the individual already knows about these, means you don’t have to go through the added stress of having to explain things. Telling your friends, means that you can be honest if you need to rush off to the loo or cancel a meeting at the last minute, which can take the pressure off in social situations.
It is also important to remember that in the unlikely event that someone does react uncomfortably or negatively that is their problem, not yours. Due to the general embarrassment around ‘toilet matters’ many people may want to change the subject, often to save you embarrassment, but gauge the situation and if you think it helps you may want to say you are happy talking about the issue. Again, many people report that when they talk about their own continence difficulties, others often open-up about their problems. The sharing of a confidence can lead to the breaking down of the taboo surrounding this issue.
In choosing to share your information, you may want to do this in the privacy of your own home, at a friend or relatives house, over the telephone, or in the quiet corner of a coffee shop or pub. But obviously, whatever the location you choose, it needs to be somewhere where you feel comfortable and not likely to be overheard.
Click Here for further useful advice.
A word about the internet
The Internet has been a useful resource and of great help to many people with a wide range of so-called ‘embarrassing health conditions’, because the comparative anonymity of the Web has meant that many people have found it easier to open-up and gain community support from individuals with the same problems. It has been especially helpful at highlighting how individuals are not the only ones with the condition, which can help with the feeling that you are on your own. In addition, some people become isolated at home due to their continence problems, and the Internet can offer a lifeline for chatting to others along with access to wider social support.
As with the wider debate on individual privacy and Web safety, it is always advisable to be cautious and never divulge personal information unless you are confident of privacy and security. As a general rule always keep in mind that it is ultimately a public domain, and there is always a chance that private information may not always be secure. We don’t want to put people off using this amazing resource but would remind them that the caution they take in their everyday lives around privacy needs to be carried over into the virtual world too.
Lived experience and realities of the day to day.
Going to See Your Doctor
Many people find the thought of discussing continence problems with their doctor a difficult prospect, for many different reasons, including feeling embarrassed, ashamed, or thinking it’s not an important enough issue. As a result, health care professionals believe that they only see around 20% of individuals who have the condition - see this link here
The key issue to remember here is that you are going to see a health care professional who will be aware of the condition and that continence problems are very common, even if people don’t talk about them widely. For example, millions of people deal with these difficulties every day in the UK and with the average GP practice having around 10,000 patients on their books, and the incidence of UI ranging from 5 to 10 percent, this means that between 500 and 1,000 patients may be affected. Therefore, when faced with consulting your GP about this issue, this statistic will hopefully give you some comfort that you are not alone with this problem. Click here for more information
In terms of booking an appointment, you may have already decided there is a particular GP at your practice/surgery that you feel comfortable to chat with, or you may decide that a doctor you haven’t seen before may be a better option. Again, you will be the best placed person to make this decision.
A little bit of preparation before the appointment can be helpful. For example, you may want to think about the way you are going to discuss your difficulties with the nurse or doctor, the issues you want to raise, or the sort of questions you might want to ask. It is also worthwhile writing these down in a small notebook and taking this with you to the appointment.
The doctor is likely to ask you a few follow up questions, therefore don’t worry if you go off topic. But if there is something that you particularly want to discuss, there should be the opportunity to raise these at the end of the appointment. Try not to get embarrassed and be as honest as you can, the nurse or doctor will use this information to get a better understanding of your difficulties, in order to suggest the best way forward.
If you aren’t satisfied with the nurses or doctor’s response, don’t worry about going to see another individual at the practice / surgery. Previously, it was possible to self-refer to your local nurse-led continence service, which many people found easier. But this now usually requires a referral from your GP, and they may suggest one, or again don’t be afraid to ask. Should you feel that the doctor or nurse you see doesn’t appear to take your problems seriously, again don’t be afraid to seek a second opinion.
If you are worried about embarrassment, try not to be, GPs completely understand this may not be easy for you to talk about. For example, GPs often speak about the ‘just one last thing doctor’ moment that they regularly encounter during their practice. This is the phenomenon where patients often leave mentioning the main reason for their visit right to the end of the appointment, because they are worried or embarrassed. In addition, don’t worry if it takes you a couple of visits before you pluck up the courage to speak to your nurse or doctor about the issue. Members have told us about not going to appointments or not mentioning their concerns, but when they have gone, as with many things in life, the situation was never as bad as they feared. With many expressing relief and happiness with their doctor’s reaction.
In practical terms, taking a notebook with you to your appointment can also be helpful, so that you can jot down any specific questions you may have, or to write down any useful information the doctor or nurse may give you. It doesn’t matter how good a memory you have, in that situation it’s difficult to remember or take in everything the health care professional may have said.
Another good idea may be phoning one of the nurse helplines from a UK charity with an interest in this area, such as BHUK helpline as the advisor/nurse may be able to give you pointers about the best way to approach your doctor, and you can also gauge how comfortable you are talking about such things with a Health Care Professional.
Try not to be embarrassed if the doctor asks you a series of personal questions, such as how often you leak or if you use pads. Be as honest as you can, there’s no point saying you only ‘leak a bit’, if the reality is very different, and it ‘doesn’t bother you’, if it’s having a massive impact on your life. In addition, don’t worry if you get emotional about the problem, this will at least convey to the doctor what a big impact this may be having on your life.
In practical terms, get to the GP surgery early and scout out the loos if you are worried you may need to go. And don’t worry about wearing a pad if you need to, as this will give you security and confidence. And with an initial appointment, the doctor is unlikely to want to do an examination. They may ask you to give a urine sample, but don’t feel pressurised to give a sample there and then. Many people struggle to ‘go on demand’, and it is often possible to go home and bring a sample in later. But of course, if you can give a sample on the day, this may speed things up.
The take home message from this section is therefore do try and see your health care professional about your UI, as the experience is never as embarrassing or frightening as you think, and being able to talk about the issue with a professional can bring great relief and be the start of the road to finding a solution for your bladder problems.
I found your information so useful and took it with me when I went to my GP!
Travelling Well With Incontinence
The key to travelling well with incontinence is forward planning and being prepared for all eventualities. Whether it’s travelling by car, bus, train or plane, individuals dealing with continence difficulties understandably worry about issues such as toilet access and potential leakage. Prior to travelling, finding out whether there are easily accessible toilets and their location can help alleviate such fears. Click here for Toilet Map
Trains and Buses
It is fair to say that If you are going to be travelling by train or bus in the UK, access to public toilets can be a bit hit and miss. Although most long-distance trains and buses now have onboard toilets, these often have high usage, and can sometimes be ‘out of order’. Therefore, if you need to go in a hurry, be aware that a toilet may not be readily available. In addition, the cleanliness of the facilities may also not be up to a high standard. This can be of particular concern if you need to catheterise or change pads or clothing. Toilets in bus and train stations can also suffer from the same problems, and it is also worth remembering that if you are travelling later in the evening or at night, you may find many toilets locked, in order to prevent anti-social behaviour or vandalism. It is also worth remembering that some toilets in stations may also have turnstiles that require coin payments, although these are becoming less common, which is a positive step. Disabled toilets. For the reasons outlined above, many people with continence problems prefer to use disabled facilities. These usually give you extra space, greater privacy, and tend to be cleaner due to less foot fall. Although the latter is not always the case. In addition, some disabled toilets are key only, which again is designed to stop potential misuse. These toilets belong to the RADAR scheme, and it is possible to purchase the special keys from several shops and websites for a small fee (RADAR KEY ). If you are worried about lack of toilet access, it may be worth thinking about wearing a continence pad for peace of mind, or if you already use pads and are contemplating a long journey, using a larger more absorbent product.
Going By Car
Travelling by car can offer advantages and disadvantages over other modes of transport. If the vehicle is yours, it makes it easier to store changes of clothes or pads, rather than having to carry them with you. The vehicle also affords a degree personal space, which can be useful. For example, many people with bladder control issues carry ‘portable urinals’ in the car, which they can use if ‘caught short’. These are available in male and female versions. But it is fair to say that using these in the car can be tricky, and it may also be helpful to have a small blanket or large jumper/jacket to hand, in order to cover yourself and maintain modesty. Many people also worry about wetting the seat, but small and discrete reusable chair pads are available, which offer a degree of protection. If you are planning a journey, particularly a long one, factoring in frequent toilet stops can also make things easier. But again, be aware of unforeseen circumstances, such as the dreaded being ‘caught short’ in a traffic jam scenario. If you are travelling as a passenger in a car, the above options may not be possible. But don’t be afraid to ask the driver about toilet stops and most people are very understanding if you explain your difficulties.
Going By Plane
Travelling by plane can be especially stressful for those with bladder problems. With issues such as access to the toilet during a flight, x-ray body scans, and airport security. The fear of leakage and/or the embarrassment of security checks consequently puts many people with continence difficulties off travelling by plane. There is also the problem of carrying additional baggage /weight allowance (for pads, catheters and/or extra clothing etc). Lost luggage can also be a big concern, and these days many people prefer to just carry ‘hand luggage’ that is stored in the cabin rather than the hold. But if you are going to be taking hand luggage and/or large suitcases, many people suggest splitting any supplies (pads, wipes, extra clothing etc) you may have across the bags, just in case any luggage does gets lost.
In addition, if you are worried about needing the toilet during the flight, consider booking a seat closer to the bathroom if that is possible. It is also important to remember that with limited facilities on the plane, there is a chance that the toilet will be occupied. Therefore, it may be worthwhile going when things are quiet, rather than wait when you really need to go, and find the toilet occupied. Also remember that facilities are often different on short and long -haul flights, with the latter often being bigger planes with more toilets. At times, you may also have to remain seated, for example during take-off and landing, or turbulent weather. If you are apprehensive, do try and talk to the cabin crew about your toileting concerns, although we appreciate this may not be easy. Flight attendants are there to help you and are likely to have already dealt with similar concerns and will usually do the best they can to accommodate your needs, and/or fulfil your requests.
It may also be helpful to have an ‘emergency kit’ with you, containing items such as spare clothes/underwear/pads/bags/wipes etc., as a ‘just in case’ measure if things go wrong. Again, the key here is to plan-ahead and be ready for any ‘worst case’ scenarios that may emerge. If you need to use the kit, at least you will be prepared, and if you don’t use it, you can always see that as a small victory. Trying not to get anxious or stressed will also help, but that is not always easy, particularly in the current climate of increased security, and of course your own fears about having an ‘accident’ or workers/staff finding out about your condition.
Although it is worth bearing in mind that we are all human beings, and that UI problems are incredibly common, and that the vast majority of people are going to be sympathetic to your needs, and that the odd negative story in the media is usually a poor reflection of the true situation. Which is one of compassion and kindness.
Click here for further useful advice.
Your tips and Can't Wait Card have been invaluable to me when out and about!
Going Into Hospital With Incontinence (Tips)
It may not be much consolation to an individual going into hospital for the first time, who has bladder control difficulties and whose always managed the problem themselves, to be told that HCPs are used to dealing with such difficulties, but this is the reality for staff in surgeries, clinics and hospitals across the UK. In addition, although it may not be easy to be open and honest about your difficulties, staff would much rather you talked to them about your problems first, rather than find out about them later, when things go wrong. That way they will get a better idea of the best way they can help you and be better prepared. If you’re worried about telling a member of staff or getting your point across clearly, use a note pad to write down your concerns down, and then ask the nurse/doctor or other HCP to read them.
If you are worried about talking about your problems on an open ward, ask if you can go somewhere more private. The ward will usually have an office or side room, where such conversations can take place, and staff are aware that patients often don’t want to broadcast their personal health concerns to the whole ward.
When discussing the issue, don’t be afraid to explain to staff about your particularly needs and do ask for help if needed. For example, you may not struggle during the day but have problems at night only, therefore you may want to discuss night-time toileting and/or other practical help during this period of the day. Also don’t be afraid to use the call bell by your bed if you need assistance. But be aware that on a busy ward, or at night, or during change over times, staff may take a bit of time to respond.
If you are worried about getting to the toilet in time, day or night, ask about being close to the bathroom. But unless you are in a side room that has an en suite bathroom, be aware that ward toilets are often in constant use and may be occupied when you need to go. Alternatively, if you are likely to be confined to your bed, it is possible to have a bottle (males) or female urinal by your bedside, in case you need to go during and may struggle to get there in time. Staff will often happily do this for you, and you can discretely store the device in your bedside locker. Another option may be to have a commode by your bed, although many individuals find this a little embarrassing, although they can be very useful. Remember, the curtains around your bed are for privacy, therefore don’t be afraid to draw them around you (or ask a member of staff to help) when you need to, for example when toileting. In recent years, there has been much debate around privacy on NHS wards, particularly staff not respecting closed curtains, as a result this issue is now taken very seriously. Therefore, staff wanting to gain access must ‘knock’ or make their presence known, before entering a curtained off bed area. However, curtains only offer visual privacy and as a patient, you are acutely aware that sounds and/or smells or less easily contained. Therefore, toileting near the bedside or in bed, can be a difficult proposition.
Be aware that whilst in hospital additional factors such as reduced mobility, being confined to a bed, or being attached to a drip can also make things more difficult, particularly if you have exciting bladder problems. In addition, some medications can cause incontinence, therefore be aware of this, and if this is causing you problems, again talk to the staff. As they may be able to suggest alternatives, change the dose, or offer other practical solutions.
Experiencing constipation during a stay in hospital is also very common, which can be due to several factors, such as lack of exercise, being confined to bed, not drinking enough fluids, and many different medications but particularly some painkillers. Unfortunately, this can also have a big impact on those individual’s with bladder control problems, because constipation can make things worse. If you experience difficulties in this area, again don’t hesitate to ask the health care staff members for help. For example, they may be able to offer you a mild laxative, to help get things moving again.
A Word About Pads
If you use pads on a regular basis, hospitals usually suggest you bring your normal pads with you. Hospitals use pads, and will supply patients with them, but they may not use the ones you have. In addition, they may not have the absorbency or the size you normally wear. Therefore, bringing your own can take away any concerns you may have. Although, be aware that if you are having treatment and or surgery, your standard pads may not be suitable. This may also be the case, if you are confined to bed for a period of time. Many hospitals make use of the disposable pant style pads, which are often seen as more dignified, and allow more able patients to self-toilet, as they can be pulled up and down more easily. Although on the negative side, they can be harder to change and may not be as good at containing leaks and/or bowel incontinence as other types of pads.
Dealing With Incontinent Episodes While in Hospital
This is the one issue that many people with continence difficulties worry most about when going into hospital. Particularly if they have always managed the condition themselves. Although not much comfort to someone whose just been incontinent, whilst in hospital, it is a common problem and one that staff will be used to dealing with. If you have an incontinent episode while up and about on the ward or in bed, the best thing to do is alert the health care professionals straight away. As remaining in wet or soiled pads/clothing for any length of time can damage your skin or increase the risk of infections, not to mention be unpleasant for the patient in terms of discomfort and loss of dignity. While it can be embarrassing to alert healthcare staff and/or ask for help, trying to manage on your own can be difficult, particularly if you are dealing with other health problems. Talking to individuals living with continence issues, many acknowledge the embarrassment of ‘accidents’ while in hospital but highlight how they were grateful of the care and support they received from staff. Sometimes you are simply not able to care for yourself and asking others to help with continence needs can be daunting, but often necessary when in hospital. Again talking to patients and staff, it is still possible to maintain dignity during care, and asking for assistance from experienced and professional healthcare workers can often save a great deal of time and emotional anguish, when an incontinent episode is managed with the minimum of fuss. Sometimes the loss of short-term dignity during assisted care is a price worth paying, to maintain quality of life and hygiene.
Worrying About Your Care While in Hospital
In recent years, press coverage of poor care, particularly of the elderly and those with continence problems has been widespread. But instances of poor care are still relatedly low, and of course, you never hear about the numerous times when things went well. As people tend to focus on negative issues, rather than positive examples of daily care. Again, if you are not happy with how you were cared for, don’t be afraid to raise your concerns. Sometimes in large hospitals with complex structures and systems the patient can become ‘invisible’ and highlighting your experiences can help alert /remind professionals to any failings, which may not always be obvious. From our experience of talking regularly to patients, most speak of being treated with amazing dignity and respect, but sometimes feel that they must fit the ward routine, not the other way around. In addition, individuals with continence difficulties should never be pressurised into being catheterised or made to wear pads. Toileting should also be on an individual basis, and not regimented, with health care workers encouraging the use of toilets rather than commodes. Other issues include the prompt answering of call bells, to prevent unnecessary episodes of incontinence and not being left in a wet and/or soiled state for long periods. And if a bladder ‘accident’ does occur, individuals should not be blamed or chastised, and be treated with dignity and respect during any clean up or follow-up care. This should be standard practice across all hospitals. But unfortunately, this requires commitment and adequate funding, and the correct staffing levels, which are not always present in an under-pressure NHS.
For a great overview of managing your incontinence while in hospital, please see this link.
Taking the worry out of hospital stays
Incontinence and Intimate Relationships
If there ever was a stigma within a stigma, then talking about the impact that urinary incontinence can have on intimate relationships, then this would be it. Yet it is not an uncommon problem, and like the issue of incontinence in general, people just do not find it easy to talk about. Particularly, in the context of a medical consultation, where individuals may feel that the issue of sex and intimacy is not something that will be taken seriously or that they should be discussing. However, research in this area suggests that urinary incontinence can have a big impact on self-esteem and body image and lead to problems with intimacy (Roe and May 1999). In fact, evidence suggests that relationship breakdowns and divorce rates are higher amongst couples where one of the individuals has a continence problem, when compared to other equivalent groups. Again, our experience of talking to individuals living with urinary incontinence has shown that when the topic of sex and intimacy is raised, there are many issues that people struggle with. These may include: fearing that they are no longer sexually desirable, worrying about leaking in front of a partner, being concerned about odour, the products used to manage the condition (such as pads or catheters) getting in the way or being a ‘turn off’, the impact that urinary incontinence may have on feelings of femininity or masculinity, and the list goes on. It is also a sad fact that many individuals are too embarrassed and ashamed to admit that they have a continence problem, even to their partner, and will often go to great lengths to hide the issue. A situation that may result in withdrawal and reduction in intimacy, which can be misinterpreted by a partner as a sign of a relationship breakdown.
However, talking to individuals about these concerns it is clear that many couples are able to get around these difficulties and have fulfilling intimate relationships, and it is important to remember that Intimacy and being close to a partner is of course a lot more than just an issue about sex.
Advice and practical tips
It is hard to give specific advice because everyone’s situation will be slightly different. But again, openness and understanding, and being able to talk about your fears and concerns with your partner, if possible, is the key here. Unsurprisingly, due to the private nature of this topic there is not a great deal of information available, even online. Again, what is available also tends to focus on the female perspective because urinary incontinence is more common amongst women, and men often find the issue more difficult to talk about.
If you are embarking on a new relationship, you may not want to initially discuss your difficulties with a partner. Or may be fearful about starting a relationship in the first place for fear of rejection. But again, talking to individuals about these concerns, being open and honest does seem to be the best policy. Whilst understanding and a sense of humour can help break the ice. But if an individual is having difficulties dealing with this, you may want to consider whether that person is right for you. With evidence showing that people in strong loving relationships can see through these difficulties.
Many individuals with continence difficulties highlight the problem of the lack of spontaneity, regarding sex and intimacy, and how this can have a significant impact. Whilst this may indeed be an issue, a degree of planning can often help alleviate many fears and make things a lot easier in practical terms. For example, emptying your bladder before being intimate with your partner can help to reduce fears about leaking, whilst having a shower/bath prior to intimacy can also help lessen worries about odour. Both behaviours that are common in couples where continence is not a concern prior to engaging in intimacy, therefore try not to worry about this. If you are worried about leaking during sex, you may want to consider a mattress protector, or even the simple use of a judicially placed ‘bath towel’. Bedwetting can also be a concern, especially when sharing a bed with a partner, but again openness and the use of devices/products to manage this problem, can make things easier.
Click here for further useful advice.
The impact on intimacy and sexual relations
Incontinence and Skin Problems
Urinary incontinence often causes skin problems, due to a combination of wetness, increased risk of bacterial and/or fungal infections, as well as abrasion/chaffing. This can often be extremely uncomfortable and painful, with itching, inflammation and even skin damage. But again, a great deal can be done to alleviate these problems. For example, changing wet items and cleaning oneself as soon as possible after any leakage, can really help. In addition, the judicious use of continence products (such as pads and catheters) can also help by keeping wetness aware from the skin. It is also important to change the devices/products regularly, and to keep skin areas ‘clean and fresh’ to prevent damage. Although you also must be careful about cleaning too much or using soaps or bath/shower gels that may irritate the skin. There are also personal care products available, which are aimed at individuals and institutions dealing with continence related skin problems that are designed to cleanse the skin with minimal harm. However, these tend to be quite expense, which may prevent many private consumers using them. In addition, they also tend to be aimed at the professional market and recognition amongst general consumers may be limited, or individuals may be put off by the ‘for continence care’ label. But they are certainly worth considering, although we would certainly recommend that people seek healthcare professional advice before using these products, either through the district nurse or continence care services, or local GP surgery. Here medical professionals often refer to the condition as IAD, which stands for Incontinence Associated Dermatitis. But if your skin irritation is comparatively mild, you may want to consider using an over the counter / non-prescription type product, such as E45 or Sudacrem that are widely used for such conditions. But again, it is advisable to seek medical advice before using such products. In addition, health professionals and carers also stress the importance of drying the skin properly after cleaning, and they recommend that individuals pat the skin dry rather than rub dry because this reduces the risk of damage by abrasion. While this may seem overly cautious, skin effected by incontinence can be fragile and easily damaged.
Many people with continence problems, particularly those that use pads on a regular basis, also use ‘barrier creams’ that are designed to protect the skin from moisture/wetness and potential damage from urinary and/or bowel incontinence. However, there are many misconceptions about their use and the potential for making pads less effective at absorbing liquid, as well as their often heavy and greasy nature. Whilst this may have been true a few years ago for the earlier generation barrier creams, more recent products such as 3M’s Cavilon and other creams like ProShield Plus by Smith and Nephew, protect the skin with minimal effects on pad efficiency and are much more comfortable to use. Many of these products can be bought over the counter, but again can be quite expensive. In addition, some products are available on prescription, which may be helpful for those that do not have to pay charges, and/or enable you to receive a month’s supply or more at a time. Therefore, although you may feel reluctant or embarrassed about bothering you GP, this can helpful. It is important to remember that left unchecked IAD can lead to the potential development of ulcers and/or sores, which can be very painful and sometimes hard to treat. As a result, taking preventative steps such as the use of barrier creams can be far more efficacious. This is especially important if an individual has ‘double incontinence’ (bladder and bowel) because skin that is in direct contact with a combination of urine and faeces can be particularly susceptible to damage.
In many care settings the effects of IAD can be significant, with incontinence and pressure sores often going hand in hand. The situation often not helped by low staffing numbers and other institutional barriers, which mean that many individuals may be left in continence products for too long and/or not cleaned up in a timely manner. But as with many other aspects of continence care, this important and closely related issue is often overlooked.
Clich here for further advice in regard to IAD.
Information on Incontinence Associated Dermatitis
Incontinence and Other Related Conditions
There are numerous conditions that can lead to or exacerbate continence difficulties. Many of these are common and wide ranging and help explain the relatively high prevalence of urinary incontinence in the UK. Data shows that women are disproportionally affected, and this is due to several factors, many of which are unrelated to specific disease states. For example, anatomical differences, hormonal factors, and problems following childbirth all lead to a higher risk of women developing urinary symptoms. In addition, the fact that women tend to live longer than men and that urinary problems are associated with ageing, is also another important factor. Whilst in men, having an enlarged prostate later in life is also a key factor in the potential development of bladder problems. In addition, other health issues such as obesity and constipation can also have a direct impact on bladder control.
Whilst functional incontinence, where individuals are continent but struggle due to environmental factors such as having poor mobility and not being able to reach the bathroom in time, are also important. Therefore, certain conditions may have an effect directly or indirectly on urinary continence, depending on the issues involved. For example, many conditions can cause weakness in the pelvic floor muscles, which are crucial for bladder and bowel control.
In fact, many common chronic health conditions can cause bladder (and bowel) difficulties. For example, diabetes particularly if poorly managed, can also increase the risk of individuals developing urinary incontinence. This is also true for heart disease and COPD. Whilst stroke, neurological (such as Parkinson’s) and cognitive difficulties (such as Alzheimer's and Dementia) can all lead to problems developing. Along with spinal cord injuries, which can have a direct effect on bladder and/or bowel control.
In addition, many specific cancers can lead to urinary problems, with bladder, bowel and prostate cancers being especially problematic. There is also a significant correlation between mental health problems (such as anxiety and depression) and urinary incontinence, although the exact relationship between the two is not fully understood. And of course, many medical interventions to tackle specific diseases themselves (such as pharmaceutical and surgical) can also lead to and/or exacerbate existing urinary incontinence. It is also not uncommon for bladder and bowel problems to exist together in the same individual, and this is due to several factors including the proximity of the two systems to each other, with one often effecting the other.
The above is by no means an exhaustive list, and the fact that the ability to control ones bladder (and bowels) is a complex process, means that almost any condition has the potential to upset this balance and lead to incontinence. But again, one must also be aware of the impact that emotional, social, and environmental factors can have on an individual’s ability to control their bladder. With this combination of medical and other factors explaining why urinary incontinence amongst newly hospitalised patients is often quite high.
If you believe that your bladder symptoms are due to a specific condition then we certainly urge you to seek professional medical advice, particularly if they are new, in the first instance. And secondly, to gather further information from the NHS or disease-specific charity, to see whether urinary incontinence is a recognised symptom/consequence of that condition. If it is, then they may be able to give you detailed advice about managing the issue from the lived experience perspective. For example, Dementia UK and Prostate Cancer UK, both recognise urinary incontinence as a potential symptom and offer helpful support and advice in the management of these difficulties.
Conditions that go alongside continence issues.
Asking For Better Care/Complaining About Poor Care
In terms of what to expect from continence care services or the specialist urology/gynaecology teams you may be referred to, you should be treated with dignity and respect and there are also minimum standards you can expect for any care and/or treatment you receive. But sometimes things can go wrong, and like anything in life you should not be afraid to raise your concerns if you feel you have not been treated properly. Although we appreciate that this can often be a difficult thing to do, particularly when you may feel in a vulnerable position. Try not to get too frustrated or lose your temper and explain your situation in a considered and calm way. But again, we appreciate that this is not always easy, particularly with a condition that often elicits an emotional response.
If you are not happy with an issue or situation, it is always best to approach the individual member of staff you have been dealing with first. They may not realise that there is a problem, and if you mention this, things can often be resolved without further action needed. Most people are very understanding and accommodating, particularly staff working in this area who are often acutely aware of the issues faced by people dealing with bladder problems and will deal with your complaint seriously.
But if the person / individual fails to recognise your concerns, ask to see their supervisor or a more senior member of staff. If the issue occurred within a clinic/hospital setting, you may want to think about contacting PALS. They act as patient support and representatives and can be found or contacted in most large hospitals. It may also be worth contacting charities involved in this area, because they might have come across your issue or heard similar complaints before and be able to offer advice and support. Beyond that, you may want to consider writing to the health board of the NHS trust, or one of the various governing bodies. This could include organisations such as the GMC, Nursing and Midwifery council, or even the Care Quality Commission (CQC). But before taking the issue any further up the managerial ladder, it is always worth trying to resolve the issue at the situational or local level.
When going into hospital, individuals with bladder problems can sometimes feel as though they have little choice as to how their condition is managed and must conform to the prevailing continence care approach in that setting. For example, they may feel coerced into using pads or being catheterised. This can often lead to differing perspectives as to the quality of care between patients and healthcare staff, and in such situations, individuals should be given the opportunity to challenge things and give their viewpoint. If this is not forthcoming, talking to a more senior member of staff may be of help. Talking to individuals, carers and family members over the years, it is clear that the vast majority of healthcare staff are keen to accommodate an individual’s continence care preferences, if at all possible, therefore do not be afraid to speak to a member of staff to explain your needs.
Click here for further useful advice.
Advice on how to solve issues in a constructive way
How can BHUK help you, if you join us?
Members Magazine "Your Bladder Health", published 3 times per year.
An excellent booklet written to provide practical help and advice.
Telephone Advice Line – 0121 702 0820
Telephone contact - with a BHUK Phone-Pal and fellow sufferer.
Comprehensive Resources - fact sheets, DVDs, lending library, Can't Wait Cards and much more.
Message Forums- exchange personal experiences of bladder illness with others.
Social Media sites including Facebook @BladderHealthUK and Twitter #bladdersupport
Area Co-ordinator - providing an opportunity to have personal contact with other sufferers.