Finding information and support for urogynaecological conditions

This section covers:

  • Information from healthcare professionals
  • Getting more health information
  • Finding support and connection in person
  • Learning and support from others online

Before having prolapse, urinary incontinence, or problems with urinary tract infections (UTI), many people told us they had limited knowledge about these conditions. This seems to reflect a general lack of awareness and “gap” in our society in understanding urogynaecological conditions and pelvic floor problems.

Jo thinks there is a “massive gap in information” around urogynaecological conditions. She thinks that it would help if materials were visual and easier to absorb.

People’s questions were not always resolved by talking to a healthcare professional, but there were other sources of information and support that the people we talked to had used. These included the internet, books, podcasts, support groups, and speaking to other people.

Information from healthcare professionals

Some people felt well informed by their NHS healthcare professionals but others like Jacqueline and Sue Y told us that they had to see several healthcare professionals before finding someone who would clearly explain things.

Sue Y found her physiotherapist to be “brilliant” and was relieved to get the information she needed.

Sometimes people felt their healthcare professionals hadn’t given them enough information, and that they needed to push to get more. Taking in the information at early appointments could be difficult, especially for those, like Phoebe, Laura, and Kezia, who were surprised to find out they had a urogynaecological condition.

Catherine “switched off” when she was told she had prolapse. She would have liked some further information and links to resources to read later.

Rose and Kezia, amongst others, felt that some healthcare professionals needed more specialised or more up to date knowledge on urogynaecological conditions, or related topics like menopause. Holly didn’t feel she was told enough about fulguration treatment but had still considered the treatment as she was “desperate to feel better”.

Rose said her GP didn’t know about other types of pessary apart from a ring pessary. She found other options for pessary types and specialist clinics online.

People also talked about receiving conflicting information from healthcare professionals. Sharon and Alaina, who have prolapse, heard conflicting views about whether they should have a vaginal or C-section delivery for future births. Anna has been told about different diagnoses and reasons for UTI and bladder pain problems, although she didn’t mind as this gave her possible explanations to explore further on her own.

Penny received conflicting information on mesh removal from two consultants, which prompted her to do her own research.

Appointments with private healthcare professionals had sometimes helped to fill gaps in knowledge and understanding for those who had access to private care. For Sophie, this gave her a second opinion. Jan felt very informed by her private urogynaecologist, who had time to answer her questions and gave her information to take home. Sharon’s private urogynaecologist “sketched everything out for me, and really took the time to talk me through it”. While going private could be a way of getting more information or having particular questions answered, others, like Alaina, didn’t feel that their private care practitioners always met this expectation.

Getting more health information

It was quite common for people to look on the internet to find out more about their condition. Sometimes this was before a medical appointment, as Eve had done to learn more about pessaries so that she “went better armed”. Others, like Rose and Mehar, looked online after their medical appointments because they didn’t feel they got enough information. Janet read other hospital’s online leaflets about prolapse and the treatments available, which gave her a “much clearer understanding of what exactly was happening”.

Kerry and Alaina felt the internet didn’t provide enough detail about prolapse. Alaina eventually felt that she was able to see a way forward and to live well with prolapse after doing her own research online. Several, including Anita, Jacqueline, Hope, and Elly, had looked on the NHS website for information Leah and Laura felt that the NHS website lacked full consideration of the causes and complexities of problems with persistent UTI and bladder pain. You can read more about some of these issues in the section about getting a diagnosis.

Leah has a diagnosis of chronic UTI. She would like the NHS website section on interstitial cystitis to say more about the limits of dipstick urine tests.

Alice, Vickie, Janet, and Jenny looked for online materials written by medical professionals. Jenny found out about the relationship between diet and prolapse symptoms online, which she felt she “should have been given” by her medical care team. Alice read up on medical guidelines from pharmaceutical and medical bodies, as well as asking for information from a relative who works in healthcare. Elizabeth and Helen had looked at medical charity websites, which Helen said were “really well informed”.

After being diagnosed with a rectocele, Jenny had some information from a physiotherapist but mostly has learnt about the condition looking online.

Rose, Melanie, Jane, Laura, and Holly talked about a process of self-education in response to the lack of awareness and knowledge surrounding urogynaecological conditions. Holly, who said she was “so used to not being taken seriously” about UTI problems, did her own research so that she was better informed and could stick up more for herself. Laura felt that she had “become an expert” in her own condition.

Some had used the internet to find specialists. Sharon found a physiotherapist online who offered a holistic approach to pelvic floor problems. Leah found a list of specialist pain clinics that she could be referred to.

Vicky describes some of the ways she finds information online. She says that finding reliable sources is key.

Hope, Jenny, Anita, Jordan, and others had looked at famous medical journals, such as the British Medical Journal, The Lancet, or searched Google Scholar, to find the latest research on their condition and treatments. Sharon had read guidelines on postpartum care written by NICE (the National Institute for Health and Care Excellence). Penny does her own research whenever any of her healthcare professionals suggest a treatment, to find out more.

Clare found some “extremely good information” on medical charity and non-profit websites.

Although people told us that internet research can be very useful, Elisabeth, Sue X, Phoebe, Mehar, and others, warned about being careful when looking online for information. Elly, Jenni, and Alice said that they try to use reputable websites and think carefully about what they are reading. Mary X and Katy look up multiple sources before making decisions and Mary X says, “you need as much information as possible”. Liz and Laura found that the information online got repetitive after a while, so they eventually stopped searching.

Janet suggests being cautious about online information and advice, because there’s “a lot of very crazy stuff out there about prolapse”.

Other types of media had also been helpful for getting more health information. Kerry, Jane, and Elizabeth had read books on women’s health, prolapse and UTIs. Liz attended a webinar run by an NHS consultant, gynaecology nurse, and physiotherapist while waiting for her appointment. Catherine and Holly used YouTube to hear more from doctors and physiotherapists. Health sections of national newspapers had also been a helpful source for Emma and Holly. Phyllis, Anita, Megan, and Minnie had read articles in magazines, though they had mixed opinions on how useful these were.

Finding support and connection in person

Other people with the same conditions had been a good source of support for many of the people we talked to. Megan’s physiotherapist had put her in contact with someone with the same problem who lived in the local area. She explained, “it’s just nice to talk to someone who actually knows exactly what you’re going through, and like when you feel down you can just talk to them and know that they’ve been through the same”.

For Julie, amongst others, family members or friends had a shared experience of urogynaecological problems, so they were able to learn from each other. Clare talked to friends of similar age who were living abroad and appreciated hearing about how other countries provided healthcare for urogynaecological conditions. Others had found support from those they had met through their religious faith, spirituality, hobbies and other things they enjoyed, such as music.

Local support groups had been helpful for Georgina, Phyllis, and Jessy. Georgina has used also telephone helplines and feels that “emotional support and sharing of experiences is really important”. Fiona found a “confidante” in one of her work friends who also dealt with chronic illness.

People also told us how their partnersfamily members, friends, and work colleagues had sometimes been sources of support. This included when others attended appointments with them, researched information for them, and had been a listening ear.

Helen shares her experiences with persistent UTIs with friends that live nearby. She hopes that being open about it will help keep other women from “suffering in silence.”

Sue Y and Jenni had friends who were nurses and had been able to ask them for help and support. Mary X appreciated having friends who she could chat to over the phone about health concerns.

Some people, including Holly, Kezia, and Iris, had professional counselling to support them. Sharon had attended a birth debrief appointment which had been “really healing”. Kezia considered seeing a therapist to be a helpful part of recovering from birth trauma and felt that more women should have access to mental health services. Catherine had found psychosexual counselling helpful to understanding the impact on her sex life of her birth experiences and prolapse.

Learning and support from others online

In some cases, people didn’t have anyone they knew with shared experiences, so they turned to the internet. People found others with similar experiences through specialist online communities on platforms like Facebook, Instagram, YouTube, and Mumsnet.

Felicity didn’t know anyone around her dealing with menopause, vaginal atrophy, or incontinence. She found Facebook to be a “really helpful” way to find others with shared experience.

Online research gave Alaina access to people’s views on prolapse around the world which helped her to change her perception of what she could to do with prolapse.

Particularly in the early days of her diagnosis, Vickie said she “just absorbed everything because I was just like a rabbit in headlights”. Melanie had arranged a consultation with a specialist after hearing about them through a vaginal atrophy Facebook group. She described the community as having “so much knowledge and kindness and panache”. Leeanne, Susan, and Jeannie had found helpful information on people’s experiences of treatment. Jenny and Vickie said it was a way to get answers to sensitive and embarrassing information about sex, bowels, and bladder.

Sharon feels that she has gained a lot through finding women with shared experiences on Instagram.

Holly finds reading about other people’s experiences on Twitter to be a “helpful” way of finding out how other people feel and manage living with chronic UTI.

Helen says she’s learnt a lot from other people in the Facebook group for chronic UTIs that she wouldn’t have known otherwise.

Kezia, who has prolapse, has found support in online communities for pelvic health. She appreciates that the information is more “easily accessible”.

However, Rose found that it was quite easy to “get a bit all consumed” by reading online forums. Eve, Alaina, and Sharon stopped going onto Facebook groups after a while. Eve also found the groups could become overwhelming, and they left her thinking of “prolapse all the time”. Phoebe who has prolapse said Googling can be “very frightening” because she mostly came across people with very serious prolapse issues. Jeannie and Vickie felt that online posts were skewed towards those having a tough time, making living with urogynaecological conditions seem more “gloomy” and “hopeless” than it actually could be.

The people we talked to in this study tended to gather information or advice from more than one person’s experience. Jamie says, “don’t just accept it as read, you know, make sure you get the same advice from more than one person before you actually follow up on it”.

Vickie thinks success stories may be under-represented on social media.

Facebook groups had been one way to chat to other people with the same condition. Felicity described this as “life changing”. Melanie describes her vaginal atrophy group as a “sisterhood” and a “constant source of support”. Leah’s chronic UTI Facebook group provides her with emotional support, which that she says isn’t available elsewhere. Jo and Julie said that joining a Facebook group helped them to realise they “weren’t alone” and “not the only one”. Katy says, “for the first time’, there were ‘people who understood how I was feeling”. Jenny and Kerry realised that there were people with prolapse worse off than themselves.

Mehar talks about the benefits of an online community and says “it’s like having your own little support group”.

Online forums could especially be helpful for those who had found no one their age with shared experience. Online forums helped Elly find other women in their 20s with prolapse, which she found a “breakthrough moment”. Vickie also appreciated hearing younger women talk about prolapse.

Whilst hearing the experiences of others was useful, some felt that it was a shame that online platforms were so central to filling in the gaps in awareness, information, and support. Vickie felt that “you shouldn’t have to go on Mumsnet or Facebook to understand what’s happening to your body and how to get better, but that is the reality”. Online communities also provided links to other resources including private specialists in the UK and worldwide.

Some also felt motivated to be involved in campaigning, advocacy and speaking out for other women. Vickie had found a podcast hosted by a mum with prolapse useful. Mehar created an Instagram page to share her experience of chronic illness with others. Jamie says, “helping other people kind of stops you thinking about yourself”. You can read more about experiences of and motivations for challenging stigma for urogynaecological conditions here.