Vickie

Age at interview: 33

Brief Outline:

Vickie had prolapse of her bowel and bladder following the birth of her second child. Throughout her experiences, Vickie has found gaps in information and support – from healthcare professionals/services and in terms of public awareness of prolapse.

Background:

Vickie lives with her husband and their two children, aged 1 and 3 years old. Her ethnicity is White British.

Condition: pelvic organ prolapse

More about me...

Vickie had prolapse of her bowel and bladder following the birth of her second child. Both pregnancies had been difficult, with Vickie suffering severe nausea and vomiting throughout. Her first child was born by caesarean after a complicated labour. Vickie had wanted a VBAC (vaginal birth after caesarean) for her second child, but this was a very difficult birth and Vickie says, “hindsight is a wonderful thing”. As she healed after the birth, Vickie “just didn’t feel right”. She had “lower back pain, … quite a lot of pressure dragging, aching, heaviness all the time”, and difficulty emptying her bowels.

Vickie asked her GP about her symptoms at the six-week check, but the GP was reluctant. The GP saw some descent but gave little explanation beyond saying he would refer her to a gynaecologist, and the interaction generally “felt dismissive”. Vickie heard nothing about the referral for many weeks and opted to use private healthcare to see a specialist, though she still had to wait several months for the appointment. Vickie “almost felt relieved” when the diagnoses were made “because I knew what it was, and I knew it wasn’t in my head”. Vickie had 12 months of pelvic floor physiotherapy which strengthened her pelvic floor, but she was “still very much symptomatic”. Vickie and her consultant agreed that surgery was a suitable next step. At the time of the interview, Vickie was 4 weeks into recovery following surgery for her bladder and bowel prolapses and a perineum repair. Recently seeing her consultant for a check-up was a “huge turning point for me mentally because I started to believe that I could get better”.

There has been a huge emotional impact and at times Vickie has struggled with feelings of “guilt, shame, fear”. Before Vickie challenged her consultant, he would often say, “You’re too young”. She thinks her consultant said this because, in the context of statistics of women with pelvic organ prolapse, “I don’t fit the mould of a textbook”, but it made her feel “I’m the cause of the problem”. Hearing pelvic organ prolapse described as an injury was very important, and Vickie thinks this can be a very powerful message to come from healthcare professionals especially.

Although Vickie very much appreciates all the help from her parents with childcare, she feels sad that she is unable to do everyday tasks herself and has to find alternative ways to comfort her children, for example (hugging them sat down rather than picking them up). Vickie talked about the impact on the whole family and highlighted how important these relationships are, but also that healthcare professionals must keep sight of the patient at the centre. At times, Vickie has felt others’ needs have been recognised at the cost of her own. For example, after giving birth, the focus was almost entirely on the newborn baby and the mother given little consideration. Then in her treatments around prolapse, the focus was sometimes on the sex life impact primarily for Vickie’s husband.

Vickie says that “throughout my whole experience of prolapse there has been gaps in information, support” from healthcare professionals and services, but also in a wider public sense. Vickie found the recommendations that people with prolapse shouldn’t lift anything heavier than 6lbs unrealistic: “my baby was nine pounds nearly, good luck”. The advice after surgery was also conflicting, with varying guidance on the websites of UK-based medical organisations and different Trusts.

It was only after her own prolapses that Vickie discovered other women in her family have experienced them too. She was surprised and saddened at the silence about this and is determined that her daughter will grow up with more awareness. Vickie has found online support groups for women affected by prolapse very helpful and there’s a strong sense of camaraderie. However, she says it’s also important to remember that most of the people using those sites “are in some form of crisis”, and those who recover and are “moving on with their life” are less likely to be posting. She says, “it takes a long time to be able to get into that place so that you can focus on recovery”, but that she’s getting there: “I feel the best I’ve ever felt because I’ve got facts and I understand what’s happening, … and hopefully soon [will be] living life freely”.

Vickie was grateful that she didn’t experience any urinary symptoms with her prolapse, but she had lower back pain and a dragging sensation, and needed to splint (a technique to help move poo out).

I was fortunate because I didn’t-, I didn’t experience incontinence and I think that would have been a bit too much for me at the time. You know, I I really feel for women who are in that, so I didn’t have that. I had lower back pain in the kind of my tail bone, top of my bottom, quite a lot of pressure dragging, aching, heaviness all of the time and then difficulty-, sorry this is too much information but I think we, really important we talk about this, difficulty being able to pass stools so having to kind of splint to get to a place where I could relive myself, that was pretty awful.

 

Vickie had surgery for her prolapse. She tries to find ways around lifting her children, such as asking her son to climb into the “pirate ship” (car seat).

So, in terms of working around the guidance, my physio was hugely important but then also other women, definitely, you know, “This is what I do. I try not to carry the baby on the walker, you know, I’ll try pushing the stroller. If they’re, you know, if they’re feeling a bit whingy and a bit upset and they want cuddles, it has to be my husband and we’ll hold hands. I guide my son into the car and, you know, make it a game and he’s climbing the pirate ship,” and all of those silly little things that just make-, inject a little bit of fun and normalise it for the children because prolapse doesn’t just affect you, it affects your wider family [and] existence.

 

Since being diagnosed with prolapse, Vickie has been cautious about lifting anything heavy. This has impacted on everyday childcare and household activities.

It’s not realistic to say to women, “Don’t lift anything heavy, don’t bend.” If you are a younger person or even an older person responsible for looking after people – grandparents, family members, partners, you’re, you’re in, you know, you have a form of employment that is linked to care, that’s not good enough. And I think that was really hard because you then feel redundant, you’re kind of like ‘How do I, you know, you know, how do I look after my kids? How do I physically do that?’ And I was very fortunate that I had, you know, an extended support network that could, you know, really roll their sleeves up and help in the kind of run up to surgery, to not make things worse and then were really critically post-surgery, you know, and even going to collect my children from nursery, I can’t do that because I can’t lift my son from the carer and pop him in the car which is such a simple 30 second little job but that could really risk all of the good work that’s been done.
 
With my little girl, it’s different, she’s three. She climbs up guided and she wants to do it all herself anyway because she’s Miss Independent. But with my son, it’s a very different situation and so that’s hard, you know, you drop something and you think ‘Oh I cant-,’ you know. And I never thought I’d want to do housework, I never in a million years thought ‘Oh I wish I could just load that dishwasher or get that washing out’, and not be, “Could you just do this, could you just do that?”
 

 

Vickie asked her GP to examine her at the 6-8 week postnatal check. Her GP seemed reluctant and she initially felt “a little bit guilty” about this, but then felt “cross” that she had needed to insist.

So yeah I went in to do the check and straight away, as humans do, right, you gravitate to baby because they’re lovely and cute and they’ve got these cute chubby cheeks and whatever. And my son was asleep at the time so I said, “Actually while he’s sleeping, can I just talk to you about some of the difficulties that I’ve been having?” and he seemed quite surprised and again maybe it’s because I look younger or whatever but. So I explained that I had this dragging sensation, it doesn’t feel right and he, he qualified my situation, first kind of vaginal delivery, “No, it won’t be, I’ll have a look but-,” you know, and I think I asked three times, “I really-, would you look? Could you check for me? Because I don’t know what I’m looking for, you know, my episiotomy’s healed but has it healed? Is it that what’s causing the problem? I don’t know.” So, I went in completely ignorant, but I did have to ask him quite a few times. He then called for the chaperone, she was lovely and she was like, “Don’t worry, I had a nine and a half pound-“ you know, that kind of camaraderie, at that kind of awkward moment when people are staring down your vagina. You know, I get it, you kind of make the, the small talk. And then even, I was quite swollen at the time and I remember he didn’t, he didn’t want to perform a full, like get the speculum and he was very much, “Oh yeah okay, that’s enough,” and kind of sat down so I, I very much felt that he felt uncomfortable. And at first I felt embarrassed and a little bit guilty for making him feel uncomfortable and then I got a bit cross actually, having come away from the appointment and thought ‘You wanna be a GP mate, these are, you know, these are the things you need to do.’

 

The uncertainty about Vickie’s symptoms had been distressing, and she felt healthcare professionals had dismissed it as normal. She had a “sense of relief” when she got a diagnosis of prolapse.

And then there’s all of the emotional, the emotional kind of impact and that anxiety around the ‘What if?’ I think early stage of diagnosis or awaiting diagnosis is really hard, really hard because you just don’t know what it is and you don’t, you don’t understand what your body’s doing from my experience of healthcare workers which is, “You’re too young, you’ve only delivered one baby. No, you’re wrong, it’s in your head, you’re just recovering.” And you know, you feel like an idiot and you feel like you’re wasting their time. And I think when I finally got to a gynaecologist and he confirmed, I just felt this sense of relief because I wasn’t making it up and I know my body and I know that it’s not right, and I think trusting women and empowering women to say, “No, you know, I need some help here,” earlier on would have had a, had a big difference both physically and kind of mentally and emotionally, I think that would have been huge. And I don’t want to criticise anyone directly because I don’t think anyone’s doing it to be difficult, I just don’t think they consider the wider kind of ripple effect of some of those stage gates being missed, I think that’s, that’s huge.

 

Vickie’s doctor discouraged her from having a pessary and did not explain the option of self-management where she could take it out when having sex.

I had asked about it at the guidance from my physiotherapist and he had shown me some terrifying looking contraption. I just thought it was a little ring but actually there’s a whole spectrum of different shapes and sizes and he showed me some and he was saying, you know, “This will, this will hurt your husband.” And I remember thinking ‘bugger him, like this is hurting me’. I would never want to hurt my husband so just want to make that really clear [laugh]. But okay that’s something I need to know and that’s something I need to discuss with my husband, you know, maybe there’s a means where women can take out a pessary for sex and refit it themselves, you know, there are ways to get around this. But I don’t want to not wear a pessary because it might hurt him as and when I have sex.

 

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.

 

Vickie thinks more signposting about healthcare services, waiting lists, and possible treatments for prolapse would have been helpful early on.

And I remember explicitly asking-, and no one has a crystal ball, right, so it’s maybe a little bit unfair to call this out, but I remember saying, “What does treatment look like? Like will it lead to surgery? What-?” you know, there’s like a million questions at the time. And he [the GP] was like, “No. No, you won’t, you won’t need surgery, it’s-,” you know. And I think ‘Well I have needed surgery so don’t, don’t tell people and discredit’, and it’s not like a badge of victory. I’m not really chuffed that I had to have surgery, it’s been bloody hard. But my point is you’ve, you’ve put into my head that it’s-, or certainly I’ve processed it that way, that it’s nothing and I won’t need care and actually I have and it’s been a really bumpy road. And I think had I had a more appropriate maybe sensitive approach at that point that said-, you know, I mean they’re general practitioner right, the name is, the clue is in the name, they’re not experts and they’re not expected to be. But and they have ten minutes to get through some, through some potentially quite meaty things so I get it, I get it.
 
But I think, you know, changing the language around, “There are numerous treatments, once you see a gynaecologist, they’ll go through it but it could be a, b, c. we tend to start slow and move forward. It could just be that you need physio, possibly we could talk about pessaries,” you know, there’s all this-. I didn’t have any of that, it was off you go and then I didn’t hear anything for three weeks, so I rang the GP, and they were very much, ‘Well it’s with the hospital.” Like “What does that mean? Who do I ring?” “Well, you’ll have to ring gynae.” “Okay, do you have a name, a number?” “No, you’ll have to go on the website.” Okay so I’m on the website and again, I don’t necessarily expect that they should have a name and telephone number for every contact for every single thing that comes out of a GP surgery, again they are general practitioners, and they have a whole raft of healthcare issues that they need to, you know, manage, forward as appropriate. I get that, it’s not lost on me. And I get that the receptionist may not know my history and necessarily-, they may have adapted their approach had they known.
 
But again, you just feel like a nuisance and then you’re blindly on Google trying to work out where to go – this switchboard, that switchboard, you know. It’s a sensitive subject to talk about. You are in a post-natal bubble in my experience where hormones are flying everywhere and you haven’t slept and all that stuff and you feel-, it just takes a lot of energy when you don’t really have it. And really if someone had said, “We’ll chase that up for you,” or, “Actually the likelihood it’s a bit of a delay but don’t panic, they’ll ring you when they can” or whatever, they’re the sorts of things.

 

Vickie, who developed a prolapse after giving birth, says that you should not feel like you have failed and that you would not “beat yourself up” if you broke your ankle.

I think language is huge. I think, I think it’s okay to say, “It’s unusual to see someone younger, however it’s likely to be these reasons”. I think there is definitely a requirement to call out this is no-one’s fault, okay, this just happens. Because I think people will just default, ‘It’s something I did wrong,’ because you’ve grown the baby, you delivered, it’s all on you isn’t it. I think there is a piece that’s says to really call out-, almost make it clinical rather than personal. So, “This is an injury that you have incurred from birth”. You wouldn’t go running, twist your ankle and beat yourself up and punish yourself for getting a broken ankle, unless you were doing something a bit silly, showing off and skipping or whatever. But with birth, it’s very different, it feels personal, it feels like you did something wrong.

 

Vickie thinks success stories may be under-represented on social media.

But I do think there is-, that would be my one concern with social media and in my early use of it, I just absorbed everything because I was just like a rabbit in headlights. And it took my husband actually to go, “Remember, you know, these women are upset, ranting a bit-,” and not in a sense of ranting to have a moan but an outlet just somewhere to kind of express how they’re feeling and seeing that others are in there and getting strength from that. And he’s like, “And that’s all good. But the reason you’re not seeing many success stories on there is because the people that have had success stories have moved on.” And actually my consultant said that so I challenged him and said, “There’s no resources, no literature, there’s nothing anywhere for me to know what my body’s doing and how better to do it, other than these conversations which are fleeting and no one my age, any forums that I do find, they’re all in their 70s and I’m 32, what’s wrong with me?” which kind of led to that ‘you’re so young’ piece. And I remember him saying to me, women in their 30s and 40s recover better and then they don’t talk about it because they don’t need to. And that is a sweeping statement, right, but maybe there’s a hint of truth in it, in that once you’re on the road to recovery, you don’t check in as much on these pages because it’s not the be and end all of your day. You’ve got other things and thank God you have, like brilliant, that’s what we want for everyone.