Thinking about the future for urogynaecological conditions

This section covers:

  • Seeking more answers and treatments
  • Expecting urogynaecological problems to continue
  • Concerns about urogynaecological problems returning or getting worse
  • Impacts on decision-making about future pregnancies and childbirth
  • Hopes for the future

Reflecting on their experiences of urogynaecological conditions so far and thinking ahead to the future, some people we talked to described being on a long process or ‘journey’. Even if symptoms had improved or gone completely, some worried about problems returning or new ones developing. For those who had complications after mesh surgery, or who were planning future pregnancies, there was a lot of uncertainty and concern.

Seeking more answers and treatments

We talked to some people who were still in the process of finding the ‘right’ treatment plan or way to manage their urogynaecological symptoms. Sabrina hoped that by going to see her GP for the first time about her urinary incontinence, she would then get “medical peace of mind that it will improve”. For those with UTIs (Urinary Tract Infections) and bladder pain who did not have a settled diagnosis or treatment plan, thinking about the future usually involved seeking further health care.

Georgina is waiting on an updated diagnosis. She hopes that this will happen quickly and that her doctor will listen to her. [Spoken by an actor]

Elisabeth, Leeanne, Jackie, and others were waiting for mesh removal surgery and hoped that this would improve their symptoms. Jackie describes waiting for the surgery as being “in limbo”. Penny is currently waiting on a second mesh removal procedure, which she hopes will allow her to move forward from her “horrendous journey” with mesh. While Sian hopes that a removal will reduce her pain, she is “under no illusions that I’ll get my life back”.

Sian is “optimistic” that mesh removal surgery will help her symptoms but doubts that it will fix everything.

Felicity and Sophie felt that their symptoms were not being managed well and hoped to find more helpful treatments. Jeannie and Kerry were waiting to try out new pessaries for prolapse.

Felicity is considering Botox for her bladder to avoid future embarrassment from her incontinence symptoms.

Different types of surgery were considered options ‘later down the line’ by some people we talked to. As part of their approach to decision-making for treatments, many were keen to try all other (non-surgical) treatment options first. Others, like Pauline, Penny, and Elisabeth, said they preferred the idea of getting surgery over with sooner rather than later in the hope that they could get back to enjoying life.

Negative experiences of healthcare can affect how people approach future medical appointments and decisions. Trusting new doctors could be particularly difficult for those who felt they hadn’t been listened to or that their doctors had not been honest with them. Sian, who had mesh injury, explained that the past “shadows your choices”. Phoebe said she had developed a “massive distrust of the medical profession” after earlier experiences of poor healthcare.

Expecting urogynaecological problems to continue

Elly, Leah, Jasmine, and Sophie felt frustrated by the thought of having to manage their urogynaecological symptoms for the rest of their lives. Leah and Sophie refused to accept that their symptoms would be “forever” and held out hope for treatments or cures. Leah worries about the impact of her chronic UTI symptoms on her partner and their sex life, and fears that getting counselling will be “another battle to try and get support to deal with the trauma from having this [condition]”.

Elly feels a mix of frustration and acceptance about her future living with prolapse.

Those with mesh complications or problems with UTIs and bladder pain were aware that things may not improve in the future. At times, Leah found the “mental side” of knowing she may continue to live with pain from chronic UTI more difficult than the day-day pain itself.

Fran felt that pain medication would only be covering up the symptoms, not repairing the damage. Some felt strongly that acknowledging the harms of mesh and chronic UTI would help with emotional healing.

Elisabeth hopes that the damages from pelvic mesh will be acknowledged and that patients will be better supported to live well.

For some people who were taking medications, thinking about the future included worries about long-term side effects, reduced effectiveness, or having problems getting hold of medications, including antibiotics.

Georgina found it difficult to think she would “be ruled by a medication regime” for the rest of her life. Alice worried about kidney problems from extended medication use, as well as possible supply issues in the future.

Alice isn’t sure that it’s safe to take medications for the rest of her life and worries about potential long-term side effects.

Leah is aware of the risks of antibiotic resistance, but thinks that women with UTIs are unfairly affected.

Those whose urogynaecological symptoms had been ongoing for a long time had sometimes come to accept the need to learn to live with their condition. Sharon felt that she had learned to live well with her prolapse and incontinence, and considered herself ready to deal with any issues that happen in the future.

Georgina, Jeannie, and Sophie were determined to do their best to get on with life, and not to let their illnesses define them. Sophie plans on trying to “improve the outcomes from the factors that I’m in control of” like managing her weight to avoid further issues with mesh or incontinence. Laura continues to live with pain from her chronic UTIs but feels that she has been able to get “a lot closer to normal” and is no longer “massively despairing” about the future.

Vickie feels well equipped with knowledge about her prolapse and is eager to get back to enjoying life rather than dwelling on the future.

Concerns about urogynaecological problems returning or getting worse

For those whose symptoms had resolved or were now well managed, thinking about the future included strategies to avoid symptoms coming back. It was frightening to think that improvements from treatments might be temporary, and symptoms could come back, or get worse.

Jo’s pelvic floor symptoms resolved after a prolapse repair surgery, but the possibility of it coming back as she gets older “absolutely petrifies” her. She tries to stay on top of lifestyle measures and hopes to be able to “relax and move forward”.

For many of the people we spoke to, the idea of symptoms getting worse over time made thinking about the future worrying and filled with unknowns. The thought of needing more doctor’s appointments, medical procedures, or surgeries was upsetting to Jo, Kerry, and Cynthia. Those with prolapse or incontinence particularly worried that surgery wouldn’t work, lead to complications, or need follow-up operations.

Planning for the future was complicated by factors that could make urogynaecological conditions worse, such as going through menopause and getting older. Jo, Elly and Jeannie were concerned about their pelvic floor might weakening further with ageing and were looking at what they could do to prevent their prolapse getting worse.

Gwen worries about her incontinence getting worse and being unable to communicate her discomfort as she gets older.

Alaina worries about menopause making her prolapse worse. Information online has exposed her both to “horror stories” and stories that are a “beacon of hope”.

Concerns about ageing and future surgeries were also shared by those with mesh complications, who worried about the mesh causing further damage inside their bodies. Jackie worries that her mesh may “invade” other organs in the future, and that she might need a colostomy bag if this happens. The possibility of the mesh creating more damage was upsetting to Fran, who described thinking about the future as “scary stuff”.

Fran finds it frightening to think about her mesh damage getting worse in the future.

Impacts on decision-making about future pregnancies and childbirth

Several people worried about how future pregnancies and childbirth could affect their urogynaecological symptoms. Kezia, Chloe, and Sharon worried about having future birth injuries that could make their prolapse or incontinence worse. Whether to have a vaginal birth or a caesarean section also became more of a consideration; Chloe and Kezia were considering a caesarean section to try to avoid further damage. Amy hoped to have another child, explaining that her prolapse is “only ever going to get worse, and so I might as well just have something nice”.

Some women had decided not to have any more children because they did not want to risk making their urogynaecological conditions worse or developing new problems. Pelvic floor surgery is usually only recommended for those who do not want (more) children, so Eve is now deciding whether to have another baby or to go forward with prolapse repair surgery.

Chloe had planned on having more children but worries that pregnancy and childbirth could make her prolapse worse.

Kezia worries that her prolapse symptoms will come back if she has another baby.

Access to information and specialist care during pregnancy was a concern for women like Iris, Chloe, Amy, and Laura. Iris found it comforting that her physiotherapist assured her that she could access support during a future pregnancy. While this hasn’t taken the worries away completely, it has helped “de-escalate that process of worrying”.

Laura worries about how long-term antibiotic use would impact a baby’s development.

Hopes for the future

People we talked to shared their hopes for the future for themselves, healthcare services, other patients, and future generations of women.

Among other things, people wanted to be able to dance freely again, go running, play with their children and grandchildren, to go on long walks, and get back to paid work. Sabrina, who has urinary incontinence, wants “to be the mum that’s playing rather the mum’s that taking the photos”.

Jan feels that she is able to “go forward” and learn to live well with prolapse and incontinence.

People also shared their hopes for the future of urogynaecological healthcare services. Leah, who has chronic UTI, hoped for a future where people “are diagnosed properly and treated properly”. Phoebe and Alaina were hopeful that new medical developments might help treat prolapse. Those who had problems following mesh surgery hoped that their experiences would be recognised and that the government and medical bodies would ensure that lessons are learned.

Phyllis, Helen, and others said that they hoped that the movement towards reducing stigma and embarrassment and increasing awareness and support for urogynaecological health continues so their own daughters and granddaughters will have a better future.