Key messages to other people about urogynaecological conditions

The people we talked to shared their key messages and pieces of advice for others affected by urogynaecological conditions. This section covers:

  • Seeking help and not suffering in silence
  • Knowing that you are not alone
  • Speaking out and not being ashamed
  • Doing research and asking questions
  • Taking care of yourself

Seeking help and not suffering in silence

A key message from many people we talked to, including Sue X, Jo, Sue Y and Jenni, was do not “suffer in silence,” go and see a healthcare professional. Jenni explained, “don’t push it behind the curtain, and Jenny said that, “When you know there’s something wrong, you need to get it sorted”. Leah, Anna, and others who had experienced problems with urinary tract infections (UTI) encouraged others to seek help quickly.

Kezia would like others with a prolapse to see a pelvic health specialist as soon as possible.

I found it difficult when people just said like things would get better because I was like ‘You don’t know that’ [laughs]. So really, I think I would just say it’s really hard and you’re not, it’s not all in your head, like you are suffering from an injury, it’s not your fault. Injuries require resources to heal effectively. So, I would just really strongly urge you to try and get those resources in place, starting with going to see a pelvic health specialist so that they can assess you individually and give you recommendations that are tailored to you. And yeah, that’s my main bit of advice and whether that’s fighting for it through the NHS or if you’re lucky enough to go private, but make sure that you do seek that support. And in the meantime, just, you can just, you’ll be able to keep going, and you’re really strong and yeah that’s all. It’s hard.

 

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Rose added, “Why should we put up with peeing ourselves?” Alice encouraged others to get help for incontinence early because “the earlier you can start treatment,” the better. Iris and Chloe said people should not feel guilty about seeking help – although it’s not “a life-threatening problem”, it’s still “essential” as a “quality of life problem”.

Megan, and others, said “don’t give up” with trying to seek medical help. Anita said sometimes patients have to “be persistent”, and Phyllis and Jackie encouraged others to “persevere”. Chloe encouraged others not to be put off by the sense of not wanting to “bother someone”.

Eve encourages others to “keep reaching out”, even when this feels really difficult.

I guess it would be to not give up even though it really may feel difficult at times, like if you’re, if you’re struggling to get people to listen to you to try and get that second opinion and try and reach out to someone else and reach out for help, that’s you know, elsewhere if needs be, don’t just, don’t just accept what you’re being told if you feel deep down that there’s something that isn’t right and just keep, keep going even though it feels, might feel hard at times. I think that would probably be. It sounds a bit clichéd doesn’t it but like I think, I think it’s so important, I think we just, we tend to, if we’re told, “No” or go, “Okay” and we don’t listen to ourselves and how we’re feeling and then it makes it harder to trust someone else with how you’re feeling but I think you’ve got to try and keep reaching out to get these things sorted.

 

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Some people we talked to said that it can be a process of trial and error finding the ‘right’ healthcare professional or service. Jacqueline wanted others to “find the right GP”, and Holly agreed that it was important to find someone “who will take you seriously”. Iris felt it was important to find a doctor that you trust because ‘”it shouldn’t be on patients to advocate for themselves constantly”.

Knowing that you are not alone

Many of those we talked to, including Sabrina, Georgina, Jane, and Elly, wanted others to know that they were not alone. Rosie said, “Whatever you’re experiencing, someone else will have” too. Knowing that urogynaecological problems were common, but not trivial, Sabrina would like to reassure others that “most people” have wet themselves at one point or the other, whether it’s a sneeze, a cough, a laugh”.

Chloe says there are lots of other people with incontinence, and that talking to others can help share the burden.

I think if you can talk about it with someone, it reduces the burden on you, and you might well find that that other person has a similar experience and is actually a lot more empathetic than you think they’re going to be, and you might also be the person that they need to hear from. I’ve been surprised by the people that I’ve shared my experiences with who have been very supportive and more than I’d have thought. A lot of people came back with, “I’ve had a similar experience” so overall I think we’d be normalising talking about these things if we all shared a little bit. But then, you know, not everyone feels they can and I completely respect that and then the other thing is I’m a big fan of pelvic floor exercises, do them because they really work [laughs].
 
More people are affected than you might think. If you’re not then your mum might be, your granny might be, your, you know, anyone you know might be and they might be suffering in silence and, you know, having a good laugh and being kind of complicit about these things if people make a joke about, ‘Oh, you know, I don’t, yeah I’m laughing or I’m sneezing or I’m coughing and a bit of wee came out,’ you know, not normalising that but, you know, just talking about it and being sympathetic to it and not, some people will make a joke about it, that’s fine if that’s that, their way of dealing with it but not everyone wants to make a joke about it and not everyone feels comfortable talking about it, so responding on an individual level to the people you know who might be affected is really, really helpful. Just yeah taking them seriously and being supportive is important.

 

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Georgina, and others, would like people to talk to each other so that they can see that prolapse is “more common than you think”. She added that it can be “a lonely place” if you think you are the only one with a prolapse. Melanie said there are many people with persistent urinary tract infections (UTIs), and it could be anyone: “your mother, your sister, your aunt, your wife”.

Elly wants people with prolapse after giving birth to know that they are not alone and encourages them not to be ashamed.

You’re not, you’re not on your own. You aren’t on your own. Like you feel on your own at the beginning and it takes a long time to realise that you, you know, this could happen at any age to anyone. It can happen after giving birth and you’re not the only person it has happened to from giving birth. And there is light at the end of the tunnel. It’s a difficult journey and hopefully it won’t always be as difficult as a journey as it is or has been for me but there is light and I’m just starting to hopefully see a glimmer of light. And we will get through it and we’ll find ways to live our lives more normally and they’ve just got to stay positive. And know that we’re in it together. Like we’re not the only ones and it’s okay to talk about it. We shouldn’t be ashamed of our bodies. We shouldn’t be ashamed. It could happen to someone you’re sat next to and you don’t know who. You just don’t know who it has happened to so we should all be more open and more comfortable to speak about it because it is normal even if we feel like it’s not normal.

 

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Several people we talked to, including Jane, Fran, Vicky, and Elisabeth, felt it was helpful to find people in the same situation. Vicky thought that being able to talk and share knowledge online was useful. Elisabeth and Julie, who had complications following mesh surgery, also found support online, and Elisabeth told us that she does not know what she would have done without this support. At the same time, Amy and Jamie, amongst others, suggested a bit of caution about the internet. Melanie said about groups on social media, “when it works it’s fantastic”, but it can also be “a double-edged sword”.

Speaking out and not being ashamed

A key message from many of those that we talked to, including María, Leah, Vicky, and Mehar, was to not be ashamed or blame yourself. Mehar said having a UTI “doesn’t mean you are unhygienic”, and it is “certainly not because you wipe your bum wrong,” said Jane.

Leah says that having problems with UTI is not because you are dirty or because you have multiple sexual partners. She emphasises that there’s no need to be ashamed and embarrassed about it.

Just try not to be embarrassed. Like this illness is no fault of our own, you know, there’s nothing that we could have done differently. Although I did say right at the start, around potentially it could have been different around the, if I had stopped with the prophylactic but I don’t believe I’d have got the right treatment at the time anyway so I, I don’t beat myself up about it. But don’t blame yourself, don’t think it’s anything that you’ve done. Don’t think it’s because you’re dirty, don’t think that it’s because you’ve had multiple sexual partners. Our, the woman’s anatomy is unfortunately made so that for some women in particular is just quite likely you’re going to end up with a UTI. And if you’re unlucky and your antibiotics don’t kill it and it embeds, there’s nothing that you could have done to, to stop that apart from taking longer treatment which isn’t being prescribed to you. So it’s out of your, you know, it’s out of your gift to make, to make that decision. You’re at the, at the mercy of what gets prescribed to you and if you don’t get prescribed a long enough course that doesn’t properly kill it and it gets embedded, there’s nothing that you could have done differently so don’t feel embarrassed by it.
 
I’m not embarrassed at all actually so I even have on my work email address that, I want to raise awareness so I have, I have something that says that I have a chronic urine-, chronic urinary tract infection and here’s a link to find out more about it. Because actually the more we keep silent about it, the longer it will take for us to get to where we need to with the recognition of the condition and the treatment that we need and we need to shout about it and we need to get people to listen and only then will we get, yeah, only then will we get what we need and help women that are coming up behind us that are inevitably, and there will be a lot of them, lot of people in the UK and around the world that, that end up with the same symptoms that I had. And I hope that we’ve moved on to a place where they are diagnosed properly and treated properly.

 

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María wants others to know that there is no shame in “peeing yourself” or in having any health condition.

Well my positive key message would be there is no shame on that. There is no shame on, on peeing yourself because it’s literally peeing yourself. I think we think peeing yourself is only something for a kid who is five you know. But when you are in your twenties, thirties, forties and above it happens. And I think that’s the main message, you know there is no shame on, on peeing on yourself. I think it’s [sighs], it’s difficult to live with but it’s manageable, it’s not a death sentence you know. And, and I think, I think it’s important to accept slash recognise that our bodies smell like anyone’s body, not only ours, you know. And there is no shame on, on the smell, on being smelly or, but I think that there is no shame on peeing yourself although I struggle with that, I think like there is no shame on that. It happens and if it didn’t, if we are lucky enough to get to be very old we will be through that even stronger, you know, when we are very old so. 
 
I think it’s important to recognise that our bodies are, how to say? Our bodies, like our bodies work the best they can do but sometimes they can’t, and it’s fine you know. I think the problem is that we recognise, we make this and this may become more from my researcher side than from my personal side, we make this assumption that disease or illnesses mean disabled, even when you are not disabled, you know. But I think or, not, not disabled actually it’s disease is the same as non-able person, and this message of being non-abled, not being perfect, not being yeah perfect to, I don’t know, social media standards are really harmful. So I think like having something going on is not the end of the world, even when it feels like that. So I would say it goes in that direction. There is no shame on, on pee yourself but also there is no shame on, on having something that, or having your body not working as other bodies you know.

 

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Many, including Elisabeth, Rose, Alice, and others, wanted others to speak out and “have a voice”, although several, like Rose, recognised that this is not always easy. By sharing her experiences, Alice wanted other younger people to know that it is not only something that affects older people. Jasmine, who does not always feel like telling others about her UTI problems and urinary incontinence, jokingly admits that she uses the “magic word” of saying “I have a woman’s [health] problem” if she does not want to go into further detail. Beth’s message to others was “don’t be scared to talk about” your pelvic floor health. Helen and Leah, amongst others, felt that “things won’t improve” if people continue to “suffer in silence”, and Melanie wanted people to “break the taboo …it does need to be smashed”.

Doing research and asking questions

A key message to others with urogynaecological problems from many of the people we talked to, including Jan, Emma, Jane, and Felicity, was to do some research to get more informed. Jeannie said that it was important to “ask lots of questions”.

This was particularly important for women who had experienced complications after mesh. Susan advised other patients to always “question, question, question”. Sian also urged others not to have surgery too quickly before they have explored every option: “please do not jump into surgery with a ‘yes’ like I did without being given further information” on complications and risks.

Katy says “knowledge is power”, and she encourages others to find out as much as they can before making a healthcare decision.

My key message to any woman now going through a journey or not is knowledge, knowledge is power. Find out everything you need to know before taking that step forward and you know, I just think you’ve got to learn about everything that’s being done and said to you, don’t take everything for a pinch of salt. You know, just find out everything you can before you make a decision, it’s, it’s got to be. It’s really got to be. And there are great people out there. There are really kind, loving people that work within the health service. But you need to be knowledgeable about what you’re saying yes to because I was blind and just walked in and put my trust into people that you know, for one reason or another, I don’t think anything was intentional. I don’t think people intentionally go out and do, well, I hope to not think that. I wouldn't want anyone to think that anybody in the care service would behave like that. But, yeah, knowledge.

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Carole, Rose, and Gwen, advised others not to ‘automatically’ trust what they are told and “without giving it some serious thought”. Carole and Jamie wanted people to realise that “doctors are human too, and they can make mistakes.” Jan, Amy, and Julie advised others to “get a second opinion” if they are not happy with the advice or recommendations given, and to always consider a range of treatment options. Vicky and Jasmine, amongst others, advised people to seek information from a range of sources.

Melanie encourages others to do research and to not always trust what the doctor tells you about UTI.

Don’t always trust and take without questioning your doctor’s advice or words. I think this is a big one because it’s almost like a child respecting an adult and coming from a place that the adult knows more than me and I have to trust that adult. Equally, women trusting the doctor and saying “That doctor knows more than me and I accept what the doctor tells me, and I trust what the doctor says”, well actually I know this is awful, I’m not trying to be, you know, too, too outrageous here, but don’t. What you need to do is research, you need to find the right information, you need to find evidence-based information on menopause, HRT, urinary issues, gynae issues. Read up, read up, read up.
 

 

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Taking care of yourself

A key message from many of those that we talked to, including Jo and Rebecca, was to take some time to “look after yourself”.

Melanie says self-care, self-love, and self-value are important.

For us, we suffer, we suffer, we suffer, we suffer in silence, get on with it, get on with it, you know. So I think we, maybe don’t value ourselves enough. For some reason we’re just not and also we’re busy, we have children, or we have parents, elderly parents in that sort of age group so I think they call them the sandwich, the sandwich generation, you kind of have your children, maybe teenage children, your parents, so that would be the case for a lot of women and they’re working so they’re just so busy doing the usual multi-tasking, multitasking, you don’t have time. I think as a mum I’ve always put my child’s health first and his wellbeing and his clothes and new clothes and haircuts and it’s all about him. It’s always been about my child but actually now, now that I’m sort of, I’ve only done this recently self-care, self-care, self-love, self-value.

 

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Mary X said to do your best to make sure that prolapse does not “dominate your life”, and to try and look more positively towards the future. Jeannie, who also has a prolapse, wanted others to “be hopeful, be positive… You might have to change a few things in your life, but there’s other things you can do instead”. Kerry’s message about prolapse was that sometimes “it’s not fixable but it can get a lot better”.

Recovery after childbirth can be a long process, says Catherine.

I tell people that a lot as well particularly if they’re in the same situation. It’s like, yeah, you know, there is a light at the end of the tunnel but you’ve got to be, it is a slow process and you are going to have rubbish days but you just kind of got to take it kind of steady and slowly and I think that’s the thing is when you, you don’t realise that your body can take up to a year to go until you’ve actually get, recover from pregnancy because you can’t see it, it’s not like a broken leg where you know you’d had like the plaster and then you have physio, then you’re kind of good to go. You kind of think you’re good to go and then you do something because obviously you’ve got the pro, hormones still in your body and they can react very differently with like less elasticity within the joints and things like that. And people, you know, and I’m one of them, I put my hands up, you want to go back to how you were pre-baby but you forget that you’ve kind of had a baby if that makes sense and obviously things, your body had changed, you’ve got bigger boobs, your hips are now wider. It’s, it’s getting used to that side of the change in your body as well as everything, and if you’re breastfeeding, again you’re going to have the milk still there as well and that can affect, you know, not the, affect the exercise but obviously you’d need more of the supportive bra. You might not be willing to do high impact exercise. Again, if you’ve got the prolapse and you’re incontinent, you might not want to do and again it’s those kind of things that I think we need to be more aware of I think.

 

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Sharon felt “broken” by her prolapse at first, but now feels “whole” again.

We all deserve to live a vibrant active life and to feel lifted. You might feel broken right now, but it is possible to feel whole and to feel heal-, healed again and to minimise your symptoms.
 
You know, my prolapses are the same grade they were when I was first diagnosed when I was feeling really broken, really damaged, really down about it and I found a good healing team, I found a really positive pelvic health and wellness plan I put together for myself and I don’t tend to have those symptoms anymore and I do feel whole again so it is possible.

 

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A key message from many, including Amy, Jo, Beth, and Chloe, was to look after your pelvic floor as best as you can. Freia wonders “how I managed to overlook” pelvic floor exercises before, and her message to others was these should be as routine as brushing your teeth.

You can also read about key messages for healthcare professionals here.