Decision-making about treatments for urogynaecological conditions

This section covers:

  • Approaches to considering treatment options
  • Weighing up pros and cons
  • Working through treatment options
  • Changing views on treatments and decision-making
  • Deciding not to have (any more) treatments

In this section we use the terms:
Pelvic organ prolapse (prolapse) is a condition in which pelvic organs, like the bladder and uterus (sometimes called the womb), move down or slip out of place and may bulge into the vagina.

Urinary incontinence is the unintentional loss of wee/urine. There are other bladder symptoms that do not involve incontinence, such as needing to urinate a lot, getting up at night a lot for a wee, or difficulties emptying the bladder.

UTIs (Urinary Tract Infections) are when bacteria infect the system that stores urine (such as the bladder). There are other types of conditions that can involve bladder irritation and pain, such as interstitial cystitis (also called bladder pain syndrome).

Approaches to considering treatment options

There are many different treatments for urogynaecological problems, each with their own benefits, risks, and limitations. Making decisions about treatments can be challenging. In addition to lifestyle management options, there is more detail about particular treatments, and their potential side-effects and complications, in other subsections about physiotherapymedicationspessaries, and surgeries.

Janet had a good experience at a women’s health centre, where she felt listened to and the relationship with healthcare professionals was collaborative. In contrast, she’s had experiences of patronising care.

Treatment options were usually suggested by healthcare professionals, or found out about from other people, or when looking online. There were different opinions about how much decisions should be led by healthcare professionals, patients, or both. Jenny heard about prolapse repair surgery from her specialist but found it “quite scary” and worried about the possible need for follow-up operations. She chose to postpone surgery by testing out non-surgical treatment options and found lifestyle adjustments and pelvic floor exercises are currently working for her. Like others with problems with UTIs and bladder pain, Clare felt she ended up in “just a repetition of a pattern that wasn’t working [with treatments]… I had to go off and do my own research”, to return “armed with information” for her GP, who was receptive to this approach.

For Pauline, who currently uses a pessary, the suggestion of a hysterectomy has been “in the air for a while”. She takes the lead from her doctors. If she could, she would like to have the operation as soon as possible.

Melanie appreciates that her GP has been receptive to the treatment recommendations from a private UTI specialist.

Most people we talked to appreciated shared decision-making and discussion with their healthcare professionals around treatments. It was valued when healthcare professionals offered information and guidance, whilst also giving patients choices and input. Melanie described having a “collaborative” relationship and “good dynamic” with her GP.

Mary X has open and informed discussions with her GP about treatment options.

Iris appreciates that her physiotherapist made suggestions but reinforced it was ultimately her choice.

In contrast, some felt that healthcare professionals had allowed them little to no input into treatment decisions. This was sometimes seen as paternalistic (‘doctor knows best’) and patronising, and some associated this with an older generation which Elisabeth summed up as being that “you don’t question” the authority of healthcare professionals. Rose described seeing a consultant whose “whole attitude and approach was stuffy and old fashioned”.

Jeannie got the impression that the specialist thought she should have surgery and was “being a bit silly” to have reservations.

Julie, Rose, Jeannie, Phoebe, and Kerry felt they had been presented with surgery as the only or default treatment option. Sharon was surprised that surgery was the main option discussed by her consultant because her prolapses were “mild” and she felt that she was “managing them well”. Phoebe felt that her surgeon was “flippant” with recommending a hysterectomy for her prolapse, despite it being a serious decision with possible complications and corrective surgeries. She found this interaction “crushing” and was discouraged that the surgeon was dismissive when she wanted to ask questions.

Rose was told she was “too young to have a pessary” while in her thirties, yet she was recommended a hysterectomy and sent “on my merry way”.

Whilst most people we talked to felt specialists defaulted to surgery too quickly, others felt surgery was withheld from them. Elly’s specialists had told her that prolapse surgery wasn’t an option for her because she was “too young” and “might want more children”, even though she was certain that “we don’t want any more children”.

Elly would like to have surgery for her prolapses, and has considered the possible risks and limits.

Listening to patients’ concerns and priorities was key. As Kerry said, “what I’d love is that actually they [healthcare professionals] have time to talk to me properly and to find out what I want”. Catherine appreciated that her second physiotherapist asked her what her “goal” was and worked with her “to get back to running”.

Rose and Kerry felt that some treatment options were blocked or discouraged because of a lack of knowledge or expertise, whilst other options were promoted. As Jane said of surgeons and surgery, “if you’ve got a hammer, everything looks like a nail”. Kerry feels that her GP was dismissive about pessaries and wasn’t comprehensive about the range of options, which she suspects stems from a staffing and skills issue at her GP surgery.

Concerns about healthcare professionals’ financial motivations and other incentives towards a particular treatment were sometimes questioned. This included concerns by mesh-injured women, and Phoebe who described how “the cynical side of me wonders whether it was because I was a private patient…”He gets more money from [a] first surgery approach”.

Weighing up pros and cons

Not everyone will view the benefits and risks of a treatment in the same way, and a treatment won’t work in the exact same way for everyone. Knowing “that surgery is not always successful for these kind of conditions [like prolapse] and there are complications” was important to Cynthia’s decision-making. Georgina said it is important to have “honest pros and cons” when you “look at all the options”.

Emma doesn’t feel the balance between the pros and cons of a medication for urinary incontinence are worth it for her at the moment.

Having information about success and failure rates of treatments, as well as risks of complications and side effects, were important to many including Sian, Kerry, and Gwen. For Jenny, this included financial costs of private healthcare too. For Janet, the success rate of surgery was important and also how likely it was that further surgery might be needed in the future. Gwen decided not to go ahead with bladder instillations because she couldn’t find enough evidence to clearly indicate that “this is the way to go”.

Making sense of risks and success rates can be difficult. Jenny knew surgical repair for prolapse could be “hit and miss”, including an outcome that “it has all gone wrong”. Alice’s consultant prescribed her a medication for urinary incontinence and acknowledged “we just don’t know [if it will work] until you start taking it”. Sian recalls being told that her chance of successful surgery was lower due to the causes of her urinary incontinence. As Alaina found, when deciding about a pessary, different healthcare professionals “have quite mixed views” about the suitability and benefits of various treatments.

For Eve, it’s not the right time in her life for prolapse surgery. She’s aware of the surgery failure rate and that she would need to have the operation re-done after a few years.

Speaking about an example of having a melanoma removed, Jenni thinks it’s important healthcare professionals give a bit of guidance about treatment outcomes.

Sophie, Penny, and Leeanne were grappling with decisions around mesh removal. Penny recognised that there were risks in keeping mesh in and in removing it. Leeanne is a carer for her parent and child so “to actually become any more disabled myself [as a result of mesh removal], I just can’t do that at this time in my life”. Jamie opted for partial removal of mesh and felt this was the right decision for her, but she has faced criticism from other mesh-injured women who felt only complete removal was the ‘right’ choice.

Sophie is deciding whether to have mesh removal surgery, and which type, which she describes as being “in between a rock and a hard place”.

Eve, Alice, Laura, and Cynthia explained that personal and lifestyle circumstances were important when making treatment decisions. These can include plans to have children in the future, being a carer for others (children, parents, and other family members), and work commitments. When considering prolapse surgery, Eve weighed out recovery time, failure rates, and the impact it would have on caring for her young children. She felt the possibility of multiple intensive surgeries was “just not realistic” for someone taking care of children.

Alice was offered tibial nerve stimulation, but she and her doctor felt that frequent appointments for the treatment wouldn’t be feasible.

Elisabeth doesn’t feel ready to have another procedure for her rectocele after a previous surgery failed and the whole experience was “quite awful and quite traumatic”.

Cynthia hasn’t felt emotionally ready to consider surgery prolapse and, although she feels a bit “in limbo”, things are manageable right now.

Holly and Megan said that feeling “desperate” to be well again drove them to consider treatments that they saw as risky. Holly had bladder fulguration for her recurrent UTIs and, in hindsight, thinks she should have asked for more information before agreeing to it; she now wishes she hadn’t had it done. Elisabeth, who had mesh, recalled how “I got to the point of desperation where I just felt everything was falling out and nothing was working and everything was uncomfortable and anything to just repair it please”.

The thought of some treatment options invoked an emotional reaction for some people. In response to the thought of vaginal closure surgery, Liz saw it as “taking away your womanhood” and Jenny thought it “sounds a bit barbaric to me”. Liz, Sharon, Jacqueline, and Cynthia talked about the media awareness around mesh-injury fuelling their fears about surgery.

Liz finds vaginal closure surgery to be off-putting and has unanswered questions as to what type of pessary would suit her needs.

Some people felt that healthcare professionals, and patients, sometimes opted for treatments because they felt helpless and wanted to ‘do’ something. Holly thinks some options are resorted to for bladder pain and problems with UTIs when healthcare professionals “don’t actually really know what to do for you”.

Vicky didn’t want to leave an appointment empty handed. She was prescribed a medication that wasn’t really right for her symptoms, and ultimately found an alternative treatment that works for her.

Working through treatment options

Some people sensed there was a list or ladder of treatments they could work through – including lifestyle management, conservative treatments (like physiotherapy and pessaries), and surgical interventions. As Kerry explained, “I’d like to start with the least invasive and work up to and see how we get on”, and Jenny, Laura and Phoebe agreed with this approach too.

Kerry would like for it to be an option to self-refer to physiotherapy for prolapse and for there to be more emphasis on non-surgical treatments.

This approach to treatment options could give people a chance to see what works, and feel sure they had exhausted options before moving on to something else if it didn’t work or was not as successful as hoped. Sue Y is “the sort of person who is prepared to stick at something”, and had “given it a good go” with three different types and sizes of pessaries before deciding this was not the right option for her.

Minnie worked through a series of treatment options for urinary incontinence in the order recommended by her doctors.

For most people with prolapse and/or urinary incontinence, surgery was, as Jan described it, an “end of the line” treatment option. This was in contrast to how it had been presented as the only or ‘gold standard’ by specialists. Rose found it “really odd… [to] just jump straight to surgery”, without considering other options first. Phoebe felt suggesting surgery from the outset sent the message “that it’s only gonna get worse, whip them out”, which she disagreed with. Megan, who experiences bladder pain and problems with UTIs, has been told that a last resort is bladder removal: “you can’t reverse getting your bladder out, so I’ll have to try everything first before I go for that one”.

On the other hand, it was important to many of the people we talked to that they didn’t spend unnecessary time, energy or money on treatments that wouldn’t work for them. This meant sometimes ruling out some treatment options that were unlikely to help, and progressing onto others on the ‘list’ of treatments.

Changing views on treatments and decision-making

Feelings towards treatments can change over time and circumstances. Georgina had initially been “reluctant” to have prolapse surgery because of adhesions (scar tissue that joins two surfaces of the body that are usually separate) from a previous operation, but eventually chose to have it.

Some people we talked to, like Jenny, Phoebe, Rose, Amy, and Fiona, didn’t want to have surgery for prolapse or urinary incontinence right now, but thought it was likely they would consider it in the future. Others didn’t think they would choose surgery. As Jeannie said, “if I’ve tried everything else, I’m still not even sure that I’d want to have an operation actually”.

Amy’s feelings on treatment options, including surgery, vary from “day-day”.

Views on treatment decisions sometimes changed with time. This included those who wished they had sought medical help sooner, and those who regretted treatments that had resulted in serious complications. Leeanne, who is mesh-injured, said, “with hindsight, I would in a heartbeat turn the clock back to having that [incontinence] and having only that”. Elisabeth now thinks she would have avoided mesh surgery, despite having several “wonderful” years until her complications started. Sophie, and Fran talked about wishing they had listened to their gut feelings and intuition that they shouldn’t have surgery. Janet wondered if she would have been better off in the long run if she had never had a hysterectomy.

Holly now wishes she had asked more questions before having bladder fulguration (a procedure which burns the bladder lining).

Leah thinks that using antibiotics to prevent the chance of getting a UTI for so long may have been a “mistake”.

However, as Anita said, “it’s easy to look back now and think, ‘well why did I put up with that, why?’”. Holly understands that her choice to get a bladder fulguration was the result of “looking at my long term future health” and the potential of decades of chronic pain. Leah felt it’s important not to “beat myself up” for what she didn’t or couldn’t know before.

Deciding not to have (any more) treatments

The decision not to have any treatments is an important one too. Not everyone we talked to had had treatments for their urogynaecological problems. A few people, like Elisabeth, had treatments in the past but were not currently interested in others. Jane has chosen not to see a urologist because she sees that leading to invasive treatments; she found this decision “quite a lonely feeling, but it’s quite empowering as well”.

Elisabeth had surgeries previously for prolapse and urinary incontinence, including mesh, but isn’t interested in having any more.