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.

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.

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.

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.

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.

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

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.

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.

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.

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.

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

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.