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]

First of all, I’d like I would like a, a proper diagnosis. Whether I have to have any investigations to have that done, I would prefer to have investigations, I know many of them aren’t very pleasant, but I’d rather really try and know what’s going on. Whether that will happen or not I don’t know. I hope someone will listen to me and really listen to my concerns about my previous experiences, and treat me as someone who is, if you like, what they call an ex, someone who’s experienced in these conditions, and, and knows their body. I hope I get someone who’s sympathetic like that, and I do hope I can get a proper diagnosis, and it’s from, until I get that I won’t know what I need done, or if anything can be done. And I hope that would happen speedily, well I think that won’t happen speedily. So, I mean I would consider going private maybe but for some of the diagnostic tests.
 

 

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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.

I am optimistic, but I’m also realistic on my chances of having a full recovery. And I’m under no illusions that I will get my life back to how it once was because I don’t really much want that to happen. I’m looking forward to the outcome where I’m in less pain. I have been made aware that my incontinence could be a lot worse. And I have replied to that as, “I personally don’t care if the incontinence is a lot worse. I can live with that. But I can’t live with the level of pain I’m in now.” I am feeling optimistic that because this long arduous journey is about to come to an end. That’s how I feel. And have closure as to why over these many years I’ve been so unwell with fatigue, allergies, great pain, and so much more. There’s been a lot of unexplained symptoms I’ve had. Although some can be attributed to things such as osteoarthritis and other conditions that I’ve got, some cannot be.
 
Once I’ve completed the next phase of finding out this, getting this hopefully sorted. I can put it down, put to rest, live with what I gotta live with and get on with the next chapter and that’s how I sort of compartmentalise it. So, it’s healthy for me. I might not work for anybody else, but it works for me.

 

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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.

I am suffering with having accidents I have to wear pads when I go to bed and I mean at 48 that’s not cool so that’s the next thing that I want the doctors to address whether or not I’m going to need a treatment or Botox in my bladder or something, I’m just researching at the moment but I am not putting up with being incontinent at the age of 48. But that’s another thing they just, like oh okay, you know, they’re just ignoring it and it’s like can you imagine waking up in the morning, you know, you’re in somebody else’s house and you have an accident, you know, it’s really embarrassing, so I don’t want to live like that so yeah that’s the next thing that I’m fighting for at the moment.

 

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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.

But, obviously, ideally I feel like I wish I could just wave a magic wand and everything would be fixed all in one go in an ideal world but on this journey, I think I’ve accepted that there isn’t a magic wand and I probably am going to have to battle with these problems. It’s not going to be the quick fix that I want it to be. I’m going to have to work on my pelvic floors forever, you know. I may need more surgery if my uterus prolapses further in the future, maybe I’d have to have a hysterectomy and that can cause vault prolapses. So it’s just, it feels like you’re on a never ending road of Possibilities that could happen in the future.

 

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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.

You know, you don’t want a huge, I mean I don’t, I don’t want someone to come along and say oh you can huge pay-outs or this that and the other, that’s not what it, I just want someone to try and put it right understand what I’m going through and for the people who want that, saying it’s not happening and it’s not, you know, it’s okay and it’s safe and it isn’t safe and I know some people will think it’s about £billion lawsuits or pay-outs or whatever, it’s not for me, all I want is someone to say there is a problem with it and we accept there’s a problem with it, but I suppose for them to do that it opens up the can of worms. I just want someone to be honest at the end of the day and say we’re sorry and help us live the rest of our lives to the best that we can. You know, I’d like to think that in five years’ time I’m still playing bowls and that, in fact five years’ time I’m not in a wheelchair because I can’t move because some people are, you know ow, some people have lost their jobs, some people are living in such agony they can’t get out of bed each day the depression, the, all the sides like that. That’s the last thing I want to do I want to still be able to live my life and I will do my best but we’re coming up against too many brick walls along the way.

 

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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.

My biggest worry is like kidney problems or things like that, and the long-term effects of being on this medication. You know, it’s, it’s great that it’s solved a lot of problems associated with my condition, but it’s that ‘do I want to be on it for the rest of my life, until I am an old woman? What are the other options?’ I suppose. I suppose my one option would be to go back to how it was or not be on anything at all. But then I go back to square one again and having all the symptoms again.

 

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

You acknowledge that there is a, there is a very, we’re in a dangerous position in society about antibiotic resistance but you don’t want to be the one to sacrifice your treatment that you should be getting when you’re in that much pain for the wider good when there are so many other things that we could do to reduce antibiotic usage, whether that’s in ani-, like how we use it in animals, in, for the meat that we end up eating, with, you know, with all of the antibiotics that get put in to pigs or chickens or whatever. They’re, I just, yeah, so you’re very much aware that there is this, there is this bigger picture but when you’ve got the condition yourself, you don’t want to be the sacrificial lamb that is not properly treated by the NHS because of this worry about the wider picture. And you do feel, and I only have limited knowledge on this but from talking to some other people around, there are male conditions, predominantly male conditions, where there isn’t the anxiety around prescribing those long-term antibiotics. And yet UTIs is a predominately female issue and it seems to be the condition where we try and reduce and reduce and reduce the antibiotics.

 

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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.

And I know it, it probably sounds, it’s like a silly thing to say because I’m sat here crying for the last hour whenever, but I feel the best I’ve ever felt because I’ve got facts and I understand what’s happening, you know, I will always manage my prolapse. Even if surgery repairs it, it’s likely to come back, particularly when I menopause and I just think knowing that and knowing the things that will help and hinder, and hopefully soon living life freely. Not being so frightened that you might, you know, something might pop or whatever, that you can’t have fun. You know, I’ve got a three-year-old and I’ve got a one-year-old and I want to bloody enjoy them. I’ve gone through literally hell to get them here. I never thought I’d say this, but I want to go back to soft play.
You know, I want to do, I want to take them to the seaside and run on the beach and be able to do all these things that I just haven’t been able to do. I don’t want my little girl to say, “But your operation, mummy,” or “Are you better yet?” and all of these things, you know.

 

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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.

And it’s impacted on my life since I was 17 years old and I’m hoping that it don’t get much worse, but I am approaching, or, not, older age cos I know I’m old now but older age, and it’s a big worry for me, incontinence, and urinary and faecal incontinence. And I think to myself well I don’t, I’m not looking forward to having to go in a home, how do I explain to somebody that I’m having a urinary tract infection if I’m going a bit gaga? The thought of being faecally incontinent and having to be cleaned up and, and wear pads and everything else, it’s a horrible thought. Horrible thought. I’m hoping they’ve brought euthanasia in by then. Yeah, don’t want that. So yeah, yeah, urine has been in my mind a long time.

 

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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”.

So, what does the road ahead with prolapse look like for you?
 
I think it’s all, well, it can kind of look terrifying. So, I kind of like if I Googled just like sometimes as if it’s just gonna get worse. It’s gonna get worse as I go through the menopause. There’s like horror stories of the internet. Imagine me getting worse I feel like kind of like desperately hoping that there’ll be some kind of like miracle, surgical procedure that they’ll suddenly discover or have some kind of breakthrough with that, you know, will kind of put everything back that I never have to think about it again. But however, I guess, you know, other days I think well, I’m seeing people on Instagram that’s been a big kind of like beacon of hope at times, where they’re like, I need to lift ‘cos I need to get strong, ‘cos if I’m going through the menopause or whatever kind of life throws at me, you know, regardless of having a prolapse, I need to live my life. And so, I guess they’re the kind of people that I tend to look towards and think, “yeah, I can do that too”. There’s no reason I shouldn’t be able to.
 

 

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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.

But, It’s just so depressing, the whole thing is so depressing, and I’m frightened. You know, you think of the future, if they take the rest of this out, will I walk again. That’s scary, scary stuff. If I don’t get it taken out and I just let it get worse and worse and I keep popping the pills to try and do anything, am I making it worse by doing that because its false security isn’t it? It’s like you take pills to block the pain. A bit like people do psychologically with drugs I suppose, you know, I’m doing it physically to block the pain, ‘Am I making that spine damage worse? Am I making my nerve damage worse?’ Nobody tells you, I have no idea the answer to these questions. It’s just awful, the whole thing’s awful, it’s a mess.

 

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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.

I kind of had entertained ideas of maybe, before all of this, kind of thought I might like to have more than two children, maybe three. Fairly categorically don’t think I’ll have more than two now because of the cumulative effect of pregnancy and childbirth and I don’t think it would be, I I don’t think I could cope with this, times three basically. I will have a second child I hope, I hope but it will I I feel I feel like there’s a big risk attached to it, there’s a massive risk that things could get worse for me and I remember how down I felt at the beginning with this, after this birth and I know that there’s a risk that things could happen again and I will feel like that again and then the risk that things might not get better and that does worry me because I don’t want to set myself up for not being able to look after babies , you know, because I’m feeling so down about things and upset.
 
I then also know that the chances of things happening again are low and I know who to ask for help now, I know how to minimise the risk with, yeah exercises and physio and things but the mode of delivery is the biggest thing for me so I don’t fully know whether I would go for a vaginal delivery or a caesarean. I’m weighing up the pros and cons of those, it’s really hard for me at the moment. So, I think I’m gonna have to wait and see whether I make a really, really good recovery from this or not as to whether I opt for a caesarean or not and yeah it has impacted the number of children I think I’d have and how I would have them definitely.

 

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

But I don’t know, like obviously it’s early days anyway but I can also imagine that it’s not necessarily a good idea in terms of I wouldn’t want to go through the whole pregnancy just being worried that the prolapse might kind of-, particularly if I’ve been able to rehabilitate. Like, say if it’s this time next year, I’ve rehabilitated it really well, like it’s still a bit there but I’m really fundamentally asymptomatic, I think I might be then quite anxious during a pregnancy that my symptoms would return, or I’d make things worse. So, I might not feel comfortable kind of opening myself up to that risk and of course the risk of further birth injury but I might, so I don’t know. I might have the opinion of ‘actually no, I’ve really got to know myself in a kind of pelvic floor capacity. I know how to use it much more effectively, I know that I need to relax it. I know that I need to engage it here. Or I know that I can keep strong during my pregnancy’, and maybe I’ll just have a scheduled c-section and then do all of the same thing again but with my abs rather than my pelvic floor [laughs].
 
So yes. I definitely had some dark teary moments where just the thought of not being able to carry another child played very heavily on my mind and I’m not really quite there anymore, but it’s still not necessarily something that I would open myself up to.

 

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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.

I wouldn’t even know where to go to find out the reality of trying to have a, go through pregnancy with a chronic UTI. And, and the medication impacts on that because, you know, I don’t want to be, on the one hand I don’t want to limit the medication that I can take because I kind of feel that I need to throw everything that I can possible to get rid of this UTI. But, at the same time, there’s no way I’m going to be taking something that would harm any unborn child.
 

 

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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.

It has for me having the knowledge just gives me, gives me back control. It helps me believe that I can go forward with this now and that it is, I’m not a lost cause and my body’s is not just failing on me and that’s it and I’m going to have to just put up with this for the rest of my life. I mean it’s, you know, I know it’s not a quick fix, but I just feel this is it I’m going to do as much as I can now to really try and get myself, so I will be playing tennis and table tennis again and shortly and I’m going to go on holidays again. In fact, for the first time yesterday I went on a bus into our local city and thought, I’ve had a, I’ve had two months where I have not even gone into the city because of worrying about toilets.

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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.