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 physiotherapy, medications, pessaries, 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.

I mean you go in and it’s not about them telling you what to do. They take a full history, they explain all how it all works, they were, we did diary exercises about bladder and bowel and all that kind of stuff and then had a proper discussion about what the various options might be. It was much more of a holistic approach, so it wasn’t just pelvic floor exercises, it was diet, it was exercise, it was the pelvic floor stuff and I felt that I was being listened to. I felt that my views were valued and that we were working together to try and seek the best solution we could so that that for me works really well. I don’t want to be just told what to do. I want somebody who’ll talk me through what the options are and what the implications are of the various things that, that we might try so that for me works really well.
 
The, the poorer examples are the people who just said to me, almost pat you on the head and say, “This is the best thing for you dear, so we’ll just do it,” and that was, that for me and I know for other people that’s best, that that’s just what they want, they want just to be told and it’ll be fine, that for me really doesn’t work so they were the kind of examples.

 

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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.

I do exactly as they tell me, and what they do is they put in a device which helps to control it.
 
When a condition becomes chronic, you just get to the stage where you feel you should have it [hysterectomy] done.
 
Now when you get to the point where you wish it was all over, but you wish, you wish you could have the procedure done and be done with it. But it’s not my decision. It’s not my decision. No, it’s not my decision. Because when they put you on the waiting list, that’s a good sign, isn’t it?
 
Well I think that if I was very demanding, I probably would have kept asking for a hysterectomy maybe. But I don’t know what to say about that. Some cases you’ve got to wait your turn, especially at the moment with the circumstances with Covid-19 and hospitals and everything.

 

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

So my doctor has kind of stuck her neck out and said, “Okay let’s do this,” because normally with antibiotics it’s very hard for them to get them authorised because it’s, you know, the whole thing with antibiotics but she said “We’re not going to do quite as much as she said” because she said, “That’s an awful lot of antibiotics,” she said, “that will impact on your body.” I said, “I know, I know.” So she said, “We’re going to do it slightly less,” then she said, “rather than every five days we’re going to say once a week, you can have your Monuril and we’ll do the Hiprex and we’ll just review this monthly” so we’re on the second month with that. So that’s one thing, so this is where private menopause urogynae has crossed with NHS and because I’ve got a lovely doctor, she’s stuck her neck out. Probably most GPs, NHS GPs would not do that.

 

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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.

So I mean I went with a sort of list of things that I might do, like physio or, or pessaries or have an operation, cos I’d read up about it. And as I said, if, my GP’s nice cos he’ll, he sort of says, “Well, you know what do you want to do?” And I say, “Well you know, what’s on offer, what’s available?” And he will say, “Well you can, you know you can try this, or you can try that.” He very much wanted me not, I mean they try and avoid referring to the gynae, I think he, he feels they’ve got a good practice and they could probably deal with it within the practice. And if the pessaries had stayed in, then I probably wouldn’t have got as far as the gynae people, because I’d have been under their nurse and the GP. I probably wouldn’t have had the oestradiol. I think we discussed, I discussed that with him and he said, “Well do you think it would work?” And I said, “I don’t know, do you think it would work?” He said, “I’ve no idea, but I don’t expect so.” So, I said, “Well we’ll leave that one.” And it wasn’t until the physio recommended it that he prescribed that. But then he was quite happy to prescribe it. So yeah, it, as I say I probably did have a sort of agenda, but it wasn’t a very fixed one, quite happy if he’s sort of suggested something else.

 

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

So, yeah, I think, I think openness really and the agency that I felt like I had when I was with the physiotherapist was super important or just to, just for her to say, this is what I think, but actually it’s up to you. That was really good. You know, I can’t even, it gets me a bit emotional talking about it actually because all of, you know, like I went for a walk in the park and I desperately needed to go to the toilet and I like peed in my new shoes and stuff like that that isn’t how I want to live, you know. That’s not the life that I wanted for myself in my late 20s. And for her to just say, “Here, this is what I think you’ve got. This is what we can do to fix it. But you don’t have to because you’re in charge.” There was something incredibly powerful in that.

 

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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.

And the gynaecologist did an examination and said that there was a lot of laxity and we could sort this out with a small operation and I sort of burst into tears, and said that I really didn’t want an operation and isn’t there anything else, you know, that I could do. And he was a little bit [pause] I just felt that he thought I was being, just being a bit silly really, but he’s sort of said, “Well I’ll refer you to the physiotherapist and go and see her and you know see what she says, and then come back in a few months, and you know maybe you’ll have changed your mind.”

 

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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”.

I did ask about conservative management and he said it wasn’t necessary or possible. I was too young to have a pessary which I, you know, with my own research later, I came to know as being absolute rubbish. And at that point, he just offered me a hysterectomy and repair. So, I was 37 at that point. And I said I didn’t want a hysterectomy at that age. Hadn’t decided whether I’d completed our family yet, at that point. And he sent me on my merry way really. And that was that.

 

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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.

I personally would like to have a vaginal repair, anterior/posterior, so I’d like to have the cystocele repaired and the rectocele repaired, which isn’t a decision I’ve taken lightly. I understand that there’s a lot of risks that come with it and there’s a lot of risks that it can fail but there are risks and there are chances that it’s not going to. But I feel like if you make the right lifestyle choices after you’ve had the surgery, then, if it gives me ten years while my children are younger of feeling more comfortable and I don’t feel so fed up all the time, maybe that will just make life a lot rosier, even though I am aware that in the future, I may need to have surgery again.

 

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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.

But yeah I mean in terms of the side effects of the medicine for the urge incontinence, I mean just the memory I think is sort of dry mouth and kind of dizziness are maybe, a couple of them and, I mean for me I’d got a dry mouth anyway so the thought of going on anything like that that would make, sort of potentially make things worse and it isn’t as if, you know, it’s not like a maybe an antibiotic or something like that you would go on for a short period of time and that might resolve the problem, I mean my understanding is that these drugs are ones that you would be on nearly for, you know, forevermore so I, you know, I kind of felt for me I’m not, not quite ready to go down that route yet.

 

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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.

But, you know, that I was quite young so being more conservative was like better because there’s like, he said, “There’s like a thirty percent failure chance with the surgery.” I mean to me that is like, that’s high, so I’m like thirty percent is, I’m, you know, I don’t really want it and then it only lasts something like ten years as well so I mean I’m thirty-nine, so that’s another surgery at like forty-nine and, then I’m like, you know, if not sooner if it fails, so it just didn’t feel like it’s an option but then I’ve seen women say that they’ve managed to correct their prolapse without surgery, you know, through doing like pelvic floor, by doing pelvic floor Pilates and things like that, like really working on their core they’ve actually managed to reduce it. So, then I kind of think, ‘Well what is right?’ You’ve got women who are saying like on these forums, “Oh I’ve actually reduced my prolapse non-surgically,” and then you’ve got, I’ve got the physio and the consultant saying like, you know, “That is impossible, like surgery is your only option to like actually correct the prolapse”.

 

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

And I would turn ‘round to him and I would say, “Well what do you recommend,” and it really annoys me when they say it’s up to me to decide. Because this happened when I had my first melanoma, and they rang me back and said, “Oh,” that, that they wanted to see me again and I was speaking to the doctor and, and oh, I finally went to see, and I thought well what do they say? Because, “Well I don’t know, you could have another—you could have more removed or you could leave it to see what happens,” and I went to see my consultant who had come back from wherever he was, and I said to him, “Well what do you think?” And he said, “Well let’s put it like this, there’s 75% chance it won’t come back, 25% percent chance it will, you won’t know whether you’re in the 25% percent until it happens.” So, I said, “What would you do?” He said, “Well I’d go for the 25%.” So, I said, “Okay, you know, let’s do it.” So, you need-, we need-, you need to be guided and told a little bit, but it’s-, specialists shouldn’t leave it up to you to decide.

 

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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”.

But I’m definitely facing some kind of surgery and there’s also a 50% chance that any stress incontinence will return after that. So, then there’s potential for another further surgery after that to fix that. So, it’s a horrific and devastating diagnosis really. And if I’d have known of all this before I had it done I would never have had the surgery, the TVT surgery in the first place, which is I think why I feel so angry about it because I was never offered any other choice. I didn’t know about the other options, surgical options, I was just told this is the solution, it’s fantastic, and away you go.
 
But because I can’t carry on like this and just leave it as it is. So, something’s got to be done, but I feel like I’m in between a rock and a hard place deciding well which surgery do I go for? Do I go like the local guy said and just have a small partial removal, which reduces the chance of me getting incontinence back, but there’s a higher chance that it’ll just re-erode again and then I’ll just need more surgery. And then if I need more surgery then of course the there’s an increased chance of it re-eroding again, or the incontinence coming back.

 

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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.

So in my recent phone consultation she was like, “Look I, you know, I appreciate that you’re, you’re a younger woman, we wouldn’t want to do things that, you know, could, could have an sort of-, let’s not do things invasively and all the rest of it, if we don’t need to. But we are happy to explore different options.” And that’s why I’m on a different medication at the moment. And she did obviously give me another option of potential treatment, but because of my commitments to the university and sport, she recognised that I’m a young woman living an active lifestyle, and that attending hospital once a week for however many months for treatment was not going to be, realistically at the moment, be an option.
 

 

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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.

So, I think, initially, as I said because I kind of was harbouring this decision or I was sort of still incubating the decision around whether I was going to have another baby. That gave me a very easy way not to have to make a decision because it was clear that if I was going to have surgery, it should only be after I’d completed my family. So, there wouldn’t have been any point doing an operation and then having another baby, because then I would have just undone the operation. So, I would say actually probably had a three-year period where I could just put the whole thing on ice and just think, well, I’ve still got this kind of potentially, potential idea that I’m going to have another child and so, I just don’t have to make a decision at all. And that suited me quite well, because I don’t think I was in a good place to make a decision anyway. So, I just had a kind of holding thing of like well, maybe I’ll have another baby, in fact maybe I even left that option open to myself as just a get-out clause from not having to have this operation. And then I think by the time that, by the time I’d sort of come to the clarity in my mind that we weren’t going to have another baby, by then I was like, well actually you know what, this is fine. I can, I, why would I have an operation when actually day to day this is completely fine and I’m not aware of it most of the time and it doesn’t cause me adverse symptoms most of the time. It’s a hassle twice a year, because I have to go and get a pessary changed. Have to wear a pad in my pants I guess, but I just totally got used to that like I just don’t even think twice about it.

 

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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.

You know in that, he said no, we can stitch up your vagina, and I went well, “No.” Not, it’s kind of, it’s taking away your womanhood isn’t it? It’s just, no. And I think it would just cope, but if they get some of these gadgets that, and I wouldn’t want one that had to come out every night and do that, that’s too much, just something to stop me peeing and, and make sure. I’ve always got in the back of my mind that when, when they, your bladder is hanging down can you damage it? You know when you’re wiping yourself can you, nobody, nothing has said can it, can you damage it, because obviously it’s tissue, it’s an organ, and it, this, so I wonder. Because I did, went, I have photographed myself on [laughs]. And I thought I’ve got to see what this thing looks like, so there’s, there’s that wondering can, can you damage yourself? So I would like, some sort of gadget that would, or something that would work.
 

 

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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.

He discussed two different types. Went into detail and sort of threw me a bit and I just thought well, whatever he thinks will help me most. You know, you rely on the best decision making of your practitioner really so that’s what, you know what I went, you know, just what I went with. Because especially when it all gets a bit beyond you, I mean was he trying to blind me with science perhaps, you know, I thought in hindsight and at that point this was just my perception, you know, of course, all of this is my perception, he might have a different perception a little but I just felt I’d overstayed my welcome in there, I had, I’d had a longer than normal consultation but this is more out of frustration because it had taken so long, so many months to get it and that I didn’t want to leave without something at least and so being offered a medication was getting me out of the door.
 

 

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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.

I think some sort of self-referral to physio. I don’t need to see a surgeon at this point. I’m happy to wait for surgery. I don’t even know if I want surgery but self-referral to a specialist women’s physio who’s got the expertise to help me with the pessaries, to tell me whether or not I need the oestrogen cream, you know, just – and they’re such low level things. Surgery’s a huge expensive thing. I don’t understand why the NHS isn’t prioritising first level care really, I really can’t get my head round it and I think I should have had access to that within six weeks really as a minimum and it shouldn’t be, I can self-refer if I have a knee for a foot problem, for a wrist problem, for a hand problem, I can go and I can be seen within two weeks. Why can’t I self-refer for a prolapse? It just doesn’t make sense to me, but they won’t take the referral.

 

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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.

I mean they suggested that we started with the pills, which I did, and it didn’t make any difference. We then went onto the patches, and I did what was necessary for that, and that didn’t make any difference. And then, as I said, the last thing was that this kind doctor knew of the Botox clinic in [hospital] and arranged for me to go there. And they did all the tests and decided what was necessary for it. And did that, and I have been grateful ever since.

 

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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-to-day”.

So, I don’t, basically I don’t know [if I want surgery]. I go from thinking ‘Yeah, I’d have it’ to ‘No, I wouldn’t’, but then that depends on how I feel at the time. I had a really bad cough a few weeks ago, and I’d got myself where I actually felt pretty good physically, and then it, like although my prolapse was graded 2 yesterday, it’s like it was almost all the, rectocele was like a 1-2 and now it’s almost a 2-3, like it got a lot worse. And then I felt quite bad. Like I hadn’t worn a pessary for a while and I’d been feeling really good, and now I can’t imagine not wearing a pessary. And so that changes how you feel about it day-to-day.

 

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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).

It’s a fairly new procedure and I don’t think I, that was explained to me particularly carefully, and I think because we were in the middle of the Covid pandemic, and, and I was, I had been so poorly for so long I was just desperate to feel better and was willing to try anything. But actually, I think I should have asked some different questions about it. I should have asked how many times the consultant had done it. I should have asked more about the sort of evidence of you know how receptive it was, you know what sort of trials had been done, clinical trials, and I didn’t really ask any of those things because things were, consultations were being done remotely, and over the phone, and I didn’t find it very easy to ask questions. And looking back now I wished I hadn’t had it done.

 

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

And I think now when I, when I look back at the letter I think he had said to me as well, when I’ve looked at the letter as well in the past that, that if it carried on happening, if I-, to do that five times and then for it, if it then carried on after that then I should go back to him but he hoped that it would settle. And I think I was at a stage of my life where I was like ‘Oh well it’s working,’ and so I kept-, you know, I would, I had sex and then it’d work and then I got into a long, a kind of a long-term relationship and it seemed okay. I would have sex, I’d take the tablet and I thought ‘Okay well there’s no, it’s working for me, there’s no reason for me to do anything differently, I don’t need to go back’. And I had in my head, I thought, ‘Okay well once I’d been with this partner for a while it will settle down and I won’t get them anymore.’
 
So, I sort of self-medicated looking back on it which is a regret I think really but at the time I never even knew that chronic UTI existed, so I never knew that it was possible for something to turn from a recurrent UTI to chronic UTI. And I suppose, I don’t know if it would have been managed any differently if I’d have gone back at the time because I’m not sure whether he would have been able to manage the condition differently or prescribe what I needed on the NHS at that point. And I don’t like to beat myself up about it, but yeah I think it probably was a mistake to just carry on using the medication in that way but I was just so happy it was enabling me to have sex without getting the UTIs that I just carried on with it at the time.
 

 

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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.

I know I could feel inside that there was like stitches that had been there once and then again it was the same thing the second time and the, it was the registrar who did it the second time when I didn’t have any pain and he, he just said to me “If this doesn’t work we have other options.” Well it didn’t work after six months and I decided I would live with it because I just manage it, I manage my symptoms now and I manage them very well. And I don’t feel inclined to go and have another repair or anything at this stage in my life.

 

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