Chloe

Age at interview: 29

Brief Outline:

Chloe began to experience urinary incontinence and developed a minor prolapse after childbirth. She has seen urogynaecologists and physiotherapists, who have helped her manage her conditions. She finds that pelvic floor exercises "really work".

Background:

Chloe is married and recently gave birth to her first child. She’s on maternity leave from her job as a healthcare provider. Her ethnicity is White-British.

Conditions: urinary incontinence, pelvic organ prolapse

More about me...

Chloe developed prolapse and experienced urinary incontinence following the birth of her baby. Her delivery required an episiotomy (a cut in the area between the vagina and anus, called the perineum, during childbirth( and a complex repair of her perineal tissue. She felt that her “worst fears” were realised when she received an episiotomy. During the procedure, she received little explanation of what was happening, which she thinks may be linked to her job as a healthcare provider.

Chloe found her experience in the hospital to involve a “whole stream of people who just want to look at your vagina”, which limited her sense of privacy and dignity. She was meant to be referred to a pelvic health physiotherapist pre-discharge but was not seen. This made her question whether they considered her pelvic health “the least important bit”, as all her other referrals went through. Chloe regrets that her pre-discharge physio appointment was overlooked, as she thinks this could have been a “real game changer”.

Chloe met with midwives, physiotherapists, and a urogynaecologist in the weeks after her delivery. She accessed physiotherapy through self-referral and found the early phone consultation to be “critical” to her confidence in recovering. While Chloe was assured that things looked good, she felt that something was off, and her organs had moved around. Chloe noticed that she was leaking urine and was later informed she had a minor prolapse. She felt a dragging pain and a continual aching in her perineum, along with being unable to tell when her bladder was full. Physios coached Chloe on pelvic floor and core exercises that could help her build back strength.

Chloe felt her symptoms came “out of the blue”, and she felt “enormously low” as she worried that her conditions wouldn’t improve. Having issues with leakage made Chloe fear her future ability to be active and care for her child. She planned her fluid intake around going out and found that worries about her bladder were consistently at the “back of my mind”. Chloe feels that this anxiety contributed to postnatal depression, which she had difficulty expressing to medical professionals. Chloe could also not attend antenatal classes and build a strong relationship with her midwife because of the Covid-19 pandemic, which she feels contributed to the “shock” of her postnatal complications. As Chloe’s physical condition improved, she found that her mood also picked up.

With the passage of time and the introduction of a pelvic floor routine, Chloe’s symptoms have reduced significantly. Chloe manages her prolapse and urinary incontinence through pelvic floor exercises and has noticed a “gradual trend of things improving”. She performs a routine of Kegels three times a day, does Pilates when she has the time and keeps an eye on her digestion patterns. Chloe has noticed that her symptoms return if she doesn’t keep to her routine, which she considers a “big motivation” to stay consistent. At this point, Chloe considers herself to still be in the “early days” of recovery. She is delaying the decision on whether to have another baby. She thinks that she may never be “one hundred percent carefree”. She is building more confidence in her control over her bladder.

Chloe has found that pelvic health and postnatal complications can be challenging to talk about. She feels that women “don’t have a vocabulary” to talk about pelvic floor health and that they should be given education much earlier. This has been especially difficult in the context of the “taboo in British culture” around talking about bowel issues and admitting to having problems. Chloe advises women in similar situations to speak to others and normalise speaking about pelvic floor health. She has found an “ally” in her mother. She feels that their relationship has become stronger through talking about postnatal complications. Chloe has also been able to speak to her partner about it and feels fortunate that he has been supportive and open to listening.

Chloe has found her medical care to be “very helpful” but has felt let down by needing to fight to avoid falling “through the net again”. She particularly valued seeing practitioners like her urogynaecologist, who encouraged her to tell the whole story of her pregnancy and delivery. This allowed her to “get all of my thoughts and feelings out there” and feel reassured. Chloe encourages medical professionals to think of patients’ daily lives through an “emotional point of view”.

With her prolapse, Chloe says it is never "just a quick trip to the loo anymore".

The other issue is a sense of I will pass urine as usual, empty my bladder, and then there’ll be a little bit more that’s kind of stuck, have to change position quite a bit, I have to try and pass urine again. I have to do some pelvic floor squeezes to try and fully empty my bladder so a trip to the loo is not just a quick trip to the loo anymore. It’s like going through the motions of trying to fully empty my bladder properly, otherwise it just what I sometimes still do just leak a little bit of urine. But thankfully that is slowly improving as well, and the hope is that will get better so.

 

Chloe feels that she should have been referred to a pelvic floor physiotherapist after giving birth.

Yeah, one thing that I think that could have been a real game-changer was that I was told a physio would see me before discharge in like when I was in hospital just after the birth and I was told a referral would be made to the pelvic floor physios and I was told all this when I was in theatre having just had some morphine and having not slept all night so it kind of went into my head but didn’t really register but I knew, I knew what a pelvic floor physio was, I knew how referrals are made, I knew all that kind of thing because of my work but no-one did come and see me and no-one did make a referral, it was missed off but all the other things were done, all the other referrals to various blood tests and things I needed were done, so it kind of felt like ‘Oh the pelvic floor referral that’s the least important bit, ah never mind, we won’t do that.’ As it happened, I walked passed a poster for a self-referral email address, took a photo of that because I was like, I really don’t want to miss out on this and sorted it out myself. 
 
If I hadn’t had the motivation or the knowledge or the knowledge that I was supposed to be seeing someone my whole story would be different like completely different because I never got a postnatal appointment with my GP, the receptionist only made an appointment with my baby and I would have fallen through the net again at that stage because no GP would ever have asked me, “How’s your pelvic floor? How are you recovering?” and I would never have got referred that way either so I very much feel like I know, you know, without blowing my own trumpet, I’m an educated motivated person who can sort that kind of thing out for myself. There are plenty of women who would not have known to go and make that referral themselves. Who wouldn’t have sorted it, who wouldn’t have had the means to do it, the time to do it, the family support to allow them to go to appointments, you know, that kind of thing. And if that had been missed I guarantee I wouldn’t be feeling as good as I do now, so I feel I’ve had a really close shave there but it all worked out in the end.

 

Chloe self-referred to an NHS physiotherapist who was empathetic and gave her practical steps to improve her pelvic floor symptoms.

Yes, yeah so they came in, they were really responsive when I emailed them for a self-referral, they got back to me straight away and then someone gave me a phone consultation really early on and that was critical because I needed someone to talk to me early on to say, “This is going to be, like things are going to get better,” because all the other support was like 6, 8, 12 16 weeks away and I would have been in the dark and in a stressed and worried atmosphere for eight weeks, you know, if they hadn’t got in touch so early but yeah they were just really full of really evidence-based suggestions really empathetic around me, like I said to them, “I haven’t looked at the scar, I really don’t want to. I’m really scared of looking at it.” and they were like, “That’s fine, that’s normal, that’s completely understandable,” and no-one said like, ‘Oh come on, stop being stupid, like go and have a look’ [laughs].
 
So yeah they were, they were just very practical, knew all the, all the things I was gonna ask him about, they kind of already knew to tell me because they’d obviously had so much experience with people in the same boat as me and then, yeah the lady that I’ve, I’ve seen a couple of times in person just let me tell my story and let me get all these worries off my chest and then was just really practical in the examination and was just, you know, checked how I was doing my exercises properly and just really reassured me that I was doing them okay and even when I’ve said like, “I don’t think certain aspects are getting better,” she’s always got a solution or a suggestion and it’s always very much if you want to do this you can but you don’t have to and, yeah, I think I think it’s a really well run service in our local area but I know that not everyone has access to that and I know that a lot of people from when I from a Facebook group I’m part of, a lot of people have to end up taking that care privately and I think that’s really sad. I think if everybody had access to what we have access to here you know, that would be game changing, I think.

 

Chloe explains how she does her pelvic floor exercises.

So, the description that I like is a zipping up the pelvic floor and someone also said, “Trying to suck up a piece of spaghetti.” I’m not quite sure how that works but I can kind of imagine it as like a tightening throughout the whole of pelvic floor as though you were stopping yourself having a wee and I kind of try and centre it on the vagina and just bringing things upwards, holding them there and then releasing and making sure that I can feel I’ve released everything and relaxing fully until everything, yeah, feels like it’s completely let go. But yeah, I can definitely identify with that sense of it being a very nebulous entity. Up until now, I’ve always kind of done pelvic floor exercises but not with any regularity or, you know, sort of routine but this has kicked me into doing them thoroughly definitely.
 
Yes so, I have this Squeezy App on my phone which I think is fantastic so three times a day generally 9 o’clock, 3 o’clock and 9 o’clock in the evening I will do 10 sets of holding for 10 seconds each time I try and do one, one set lying, one set sitting, one set standing because the standing ones I find hardest and I know I need practice on. I do that three times a day and then do a quick fire one so like a second holding and a relaxing and a holding, relaxing, you know, quickly and then throughout the day like if I find I’m standing in a queue or something, I’ll just do a few more and then I do a couple of Pilates classes each week so obviously that part, the pelvic floor is engaged in some of that as well and I have a little post-natal Pilates routine that I try and do two or three times a week as well but that’s less good. But yeah, I have to say I do them religiously, I don’t miss any days because I get symptomatic if I don’t and I don’t like that, so I have a big motivation to do them three times a day every day.

 

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.

 

Chloe’s urogynaecologist gave her “reassurance” and made her “a bit more hopeful about the future”.

And then finally I saw kind of urogynaecologist at the follow up clinic and she examined me and, you know, listened to everything from the start to the finish really, really wonderfully and yeah had the reassurance I got from like a whole group of like complete experts looking at things was really, really good. It was good to know that they all thought everything was normal and that gave me like a whole new sense of ‘Okay actually this is all manageable and I can deal with this and things are going the right way,’ so actually in some respects having lots of examinations and lots of people look at it gave me lots of reassurance and the confidence to kind of be a bit more hopeful about the future so I, yeah, yeah there are good and bad sides to having lots of people examine you.

 

Chloe says there are lots of other people with incontinence, and that talking to others can help share the burden.

I think if you can talk about it with someone, it reduces the burden on you, and you might well find that that other person has a similar experience and is actually a lot more empathetic than you think they’re going to be, and you might also be the person that they need to hear from. I’ve been surprised by the people that I’ve shared my experiences with who have been very supportive and more than I’d have thought. A lot of people came back with, “I’ve had a similar experience” so overall I think we’d be normalising talking about these things if we all shared a little bit. But then, you know, not everyone feels they can and I completely respect that and then the other thing is I’m a big fan of pelvic floor exercises, do them because they really work [laughs].
 
More people are affected than you might think. If you’re not then your mum might be, your granny might be, your, you know, anyone you know might be and they might be suffering in silence and, you know, having a good laugh and being kind of complicit about these things if people make a joke about, ‘Oh, you know, I don’t, yeah I’m laughing or I’m sneezing or I’m coughing and a bit of wee came out,’ you know, not normalising that but, you know, just talking about it and being sympathetic to it and not, some people will make a joke about it, that’s fine if that’s that, their way of dealing with it but not everyone wants to make a joke about it and not everyone feels comfortable talking about it, so responding on an individual level to the people you know who might be affected is really, really helpful. Just yeah taking them seriously and being supportive is important.

 

Chloe, who has prolapse, would like healthcare professionals to put themselves in the patients’ shoes from “a social, emotional [and] general day-to-day point of view”.

Put yourself in their shoes as you would for any condition and think, ‘What would it be like for me if I had to plan every time I went out, if I had to stop going out? If I had to constantly make sure I had a supply of pads all the time? If I was worried that, you know, I can’t wear those trousers because what if I leak or I can’t drink a cup of tea now because what will I do in an hour’s time when I need to go to the toilet.’ Put yourself in their shoes and not just from a ‘Oh they might get a urinary tract infection point of, you know, medical view.’ Put yourself in their shoes from a social point of view, from an emotional point of view, from a, you know, a general day to day point of view and see if you think you could deal with that and the answer will be no. Like, it’s really hard for anyone to deal with and then do what you can to help with that, don’t accept any degree of continence issue, as just normal and something to deal with. Like, question it and do what you can to help because there usually is something you can do, even if it’s just talking to them and letting them tell their story and empathising with this and yeah the way you approach it, even though it’s just that, just try and you know, take it seriously and then put yourself in their shoes to see what how it’s affecting them.