Key messages to healthcare professionals about urogynaecological conditions

This section covers:

  • Being caring and treating patients holistically
  • Being sensitive about personal or potentially embarrassing symptoms
  • Listening to patients
  • Having open, honest, and collaborative conversations with patients

The people we talked to shared their key messages for healthcare professionals who see patients with urogynaecological problems.

Jane asks healthcare professionals to join patients in what can be a “dark, shaming space” of living with an urogynaecological condition. [spoken by an actor]

Being caring and treating patients holistically

A key message to healthcare professionals from many that we spoke to, including Jamie, Sue X, Mary X, and Mary Y, was to be caring to patients’ feelings and needs. This included providing more holistic care, which takes on board all aspects of patients’ health and wellbeing. We repeatedly heard about the need to be treated as a whole person, rather than as a number, set of symptoms, or problem to be routinely solved.

The people we spoke to acknowledged that providing holistic care could be difficult due to limited time, money, and staff availability. However, they emphasised that healthcare professionals showing that they care helped massively and could be healing in itself.

Mary X thinks it is important for doctors to see patients as a “whole person” rather than within the confines of a medical specialty.

Many people we talked to, like Sabrina, asked healthcare professionals to remember to be kind and nice to patients – even when they are busy and stressed. Minnie wanted them to remember that it can be very emotional so “please be patient”. Melanie feels that kindness as well as training was really important. Elly explained how this can have knock-on effects, because how a patient feels after one appointment “sets the tone for the next appointments”.

For many, the impact of urogynaecological conditions was much broader than the physical symptoms. People told us about how their emotional wellbeingquality of life, and relationships with partners and family and friends were impacted.

Alice says it stands out when a healthcare professional goes “over and above to really understand” you as “a whole person”. Several people, including Rose, want healthcare to be more “individualised”. She hopes that healthcare practitioners will consider peoples’ lives beyond just the “physical side”. Vicky wanted healthcare professionals to “look beyond the guidelines and to see that person as an individual”. Elly talked about the importance of remembering that patients are people with real lives, rather than “pieces of paper”.

Jane wants her healthcare professional to get to know her as a person and not treat her as a “machine”.

Jamie, Mehar, and others also told us about the importance of doctors seeing beyond the limits of their medical specialty. Jamie noted that it can be easy for surgeons to “presume that just because you’ve done thousands of operations that you know this person in front of you”. She encourages them to treat each patient like “an individual, not a number”, and to see them as people rather than diagnoses. Holistic care was especially important to those like Mehar and Iris with additional health or life events that informed their healthcare needs for urogynaecological conditions.

Chloe, who has prolapse, would like healthcare professionals to put themselves in the patients’ shoes from “a social, emotional [and] general day-day point of view”.

Being sensitive about personal or potentially embarrassing symptoms

Some of the people we talked to, including Chloe, Jasmine, and Alice, wanted healthcare professionals to remember that it can be really embarrassing to go to the doctor about bladder, bowel and vaginal problems. Chloe, who has prolapse and incontinence, and who is also a healthcare professional, explained that it is really important to provide a “comfortable” setting so that patients can open up about their “most personal body parts”.

Please listen and respect people’s privacy and dignity, says Emma.

Sharon, Alice, Iris, and others agreed that it can be really embarrassing to talk about urogynaecological problems and the impact on life. Iris wants healthcare professionals to keep in mind how difficult it can be to say that they’ve been having issues with urinary or faecal incontinence.

Helping patients to know that it was a professional and safe space to talk about their concerns was important to many of the people we talked to. Alice thinks an ideal healthcare encounter involves the patient being able to “ask anything and not be met with a sense of awkwardness”.

Jasmine feels “shy” talking about topics like urinary incontinence and her sex life. She would prefer that the healthcare professional raised these topics.

Listening to patients

A key message to healthcare professionals from many, including Fiona, Elisabeth, Holly, and Phyllis, was to listen and take patients seriously. This includes understanding what matters to patients, and not making assumptions. Jan, Penny, and Eve, amongst others, gave the message that it was important not just to “understand” but also “believe” the person in front of you. María, Phoebe, Jan and others, want healthcare professionals to take the time to listen “not to get only the current situation but the whole story”, and understand what it’s like to live with a urogynaecological condition.

Katy would like healthcare professionals to listen to their patients and not dismiss them, as this can have a real impact on future appointments.

Many people, including Janet and Georgina, asked healthcare professionals not to make them feel as if their conditions were trivial, or to minimise their urogynaecological problems. Even if something is not “life threatening”, say Jo and Kerry, it can still have a serious impact on quality of life and “should have the same sort of platform” as other health concerns and illnesses. Jeannie added, “don’t be dismissive” of prolapse, because “it is a big thing” for the patient.

Sharon would like healthcare professionals to realise that “it’s just so damaging” to be told “no, I think you’re fine” when your life is so badly affected by prolapse. Holly and others asked, please “don’t send us away saying there’s nothing we can do” for urinary tract infections (UTI) and bladder pain problems. Many, including Jacqueline and Mehar, asked that healthcare professionals believe their symptoms are real, though invisible, and not think that they are wasting your time.

Mehar describes ‘gaslighting’ as “making somebody believe that something’s not true, even though it is”. She has experienced this with some of her urogynaecological problems.

Having open, honest, and collaborative conversations with patients

A key message to healthcare professionals from many, including Amy and Sharon, was to have an open and honest conversation with patients, including if there were areas where you are unsure or there is mixed evidence. Amy explains, “I know [healthcare professionals] want you to feel confident in them, but I’d rather they… just had been honest”. Anna, and others, living with problems with UTI and bladder pain would like healthcare professionals to “be a bit more honest about the limits of what they can do”. Sophie, who has complications from mesh surgery says, it is important to inform patients about possible consequences of treatments, and always offer “less invasive options first”.

Sian wants healthcare professionals to be honest and give patients all the information about potential problems from mesh surgery. She adds, “above all else, first do no harm”.

Related to this, some emphasised that it was important for healthcare professionals to try and keep informed. For example, Melanie and Vicky want healthcare professionals, especially GPs, to have “up to date training in menopause”. A few, like Jeannie and Liz, would like healthcare professionals to learn about different types of pessary for prolapse. More research on chronic UTI, says Holly. Hope would have liked her healthcare professionals to have known about, and mentioned, options such as oestrogen ointments which really helped symptoms related to prolapse.

Many people we talked to, including Mehar, Leah, Jessy, and Janet, wanted healthcare professionals to listen to them, and consider their ideas seriously. Mehar adds that “it’s fine to learn new things from your patient”. Leah encourages healthcare professionals not to be “resistant to listening” because some patients are “really clued up”.

Body language is important too, and Leah and Carole asked healthcare professionals to be more aware of this. They added that it was important to not give patients an eye roll when they don’t agree with them. Jessy felt this way too: “if you disagree with me, ask me a question …be curious of what I’m saying. Don’t just shut me down”.

Helen, who is being treated with long term antibiotics for UTI, says if we didn’t listen to new medical ideas we’d all still be being treated with leeches.

Several of those who had problems with UTI and bladder pain, like Rowan, sensed a lack of curiosity about the causes. Rebecca would like healthcare professionals to be more “questioning of the diagnostics” for UTI. Julie thinks that healthcare professionals can sometimes be “a little bit stuck in the mud”, and Laura asks them to be “open to the idea that they’re not always right” or that medical knowledge can evolve.

Leah appreciates that it is difficult to ‘unlearn’ what has been taught, but would like healthcare professionals to be open to the possibility that tests for UTI are not always accurate.

Janet and others wanted their healthcare professional to “work collaboratively with them”; a “two-way” discussion, says Alice, rather than being ‘told’ and ‘accepting’. Leah thinks it is important to give patients “time and the space” to process information and ask questions. Many of the people we talked to felt it was unhelpful for healthcare professionals to hold back information or assume that they didn’t want to know or wouldn’t be able to understand it. Kerry says, “we are very capable of understanding information when it’s presented to us in an accessible way”.

Kerry would like to be given thorough information about exercise so she can make an informed choice.