Eve

Age at interview: 39

Brief Outline:

Eve has a cystocele (prolapse of the bladder into the vagina), rectocele (prolapse of the rectum into the vagina), difficulty passing bowel movements, urinary incontinence and urinary frequency. Her condition was made worse by constipation during pregnancy. Eve is working on pelvic floor exercise and trying various vaginal pessaries. She does not want surgery at this stage.

Background:

Eve works full time as a civil servant. She lives with her partner and two children, aged 3 years and 10 months. She describes her ethnicity as White British.

Conditions: pelvic organ prolapse, urinary incontinence, urinary frequency

More about me...

Eve was aware that things “didn’t feel quite... right” after the birth of her first child: she describes feeling like “my organs are falling out of me a bit”. Eve searched the internet to find out what was happening, and the GP confirmed that she had pelvic organ prolapse. During her second pregnancy, things got much worse, and Eve described a very painful experience related to an episode of severe constipation. For the first six weeks after giving birth to her first child Eve felt well supported and attended an exercise class run by the hospital. However, after this she had a very upsetting consultation with a urogynaecologist who made her “completely disengage” from healthcare. Eve explained that the language and attitude of the doctor was inappropriate, and she described how he talked about her body as ‘a thing’ and not as part of her. Eve felt “shell-shocked” after this, and it still makes her “cringe” to think of the language used.

Eve has now had appointments with a different ‘nicer’ NHS urogynaecologist but says that she has still not been given the time or information that she needs. She was prescribed a vaginal pessary to support her prolapse and does not feel that she was allowed to have a say in which pessary would best suit her. She became disheartened because the pessary was painful and ill-fitting, and she did not feel emotionally prepared to have something “alien” in her body. Eve made the difficult decision to seek private care where she was given the time to ask questions and explore a range of pessary options. She describes this as a “bespoke service” where she felt heard, understood and carefully monitored. There have been times when Eve has felt confused by conflicting information from clinicians. She is concerned that sometimes the clinician’s summary of her consultation does not match her own recollection of it, and wonders whether this is her own fault for looking too “upbeat” because she does not want to be judged as “moany” or “weak”. Eve realises that NHS resources are “stretched” but worries that the care that you receive is a bit of a “postcode lottery”. She emphasises that her account was not a “dig at the NHS”.

Eve describes her body as “broken” and this makes her feel very sad. She finds it difficult to empty her bladder and at times she needs to support her vagina so that she can fully empty her bowel; she has been told not to carry or run with her children; she describes an “embarrassing experience” at a wedding when she lost control of her bladder. Eve feels that this has had a significant impact on her mental health and she finds it emotionally draining to have it constantly on her mind.

Although her partner is understanding and supportive, Eve feels that it is difficult for others to fully understand her experience. She feels that prolapse is like a range of other hidden illness which people tend to forget about because they cannot see them. Eve has found it helpful to meet others on a Facebook group and to know that she is not alone. She feels that people don’t talk about prolapse because “it’s embarrassing if people know that your organs are coming out of your vagina”. She also feels the social pressure on women to stay young and slim and to “bounce back” after having a baby. She wonders if women’s pain is not taken as seriously in healthcare.

Although Eve has been told by clinicians that surgery is the only ‘fix’, she does not want to go down this route: “the recovery and then the chance of failure” from surgery is “just not realistic” because she has young children. She has heard that other women have managed to ‘fix’ their prolapse through exercise and feels this is the best option for her. Eve wonders why no one told her about the consequences of avoiding constipation or looking after her pelvic floor and wishes that she had known about this sooner. She feels that girls should be informed about this when they are at school. 

Eve talks about the constant presence of her prolapse and urinary incontinence symptoms, and how they affect things like going for a walk with her son.

The heaviness really is hard I think, like just that dragging and heaviness inside, because it’s, it means you can’t ever really forget about it. It’s just always kind of like there in the mind when you pick something up or you’re walking, ‘How far can I walk?’ before I feel like I’m not going to be able to go much further or, you know, when I’m out with my son and he’s running around and I really need the toilet, like I can’t really run, I feel like I can’t run after him, I mean I have to run after him because he might be just about to jump in the river so, you know, but little accidents I mean here and there when that happens, so yeah.

 

Eve finds it sad that she cannot just go out and have “couple of Proseccos” and dance with her friends without worrying about her bladder.

I’ve actually really cut back on my drinking, I mean I don’t drink loads anyway, but like, you know with kids and stuff, but I’ve actually since January pretty much stopped drinking alcohol, you know, just to see if that helps, see if that has an effect. I had quite a  little bit of embarrassing experience at a wedding that I went to where I had like a few Proseccos and was dancing and then leaked quite badly which was just yeah it wasn’t just embarrassing, I just felt so mortified like I just felt really sad that I just can’t just have a couple of Proseccos and go on the dance floor, like I I just think, I’d just forgotten, I I just wanted to feel normal like I’m at a wedding and I just wanna dance and, you know, and so that was yeah, so then luckily one of my friends there, spoke to receptionist and got me some pads, oh it was just like, you know, yeah but that’s quite, yeah that’s quite embarrassing. Like yeah, it’s just being out and about and not knowing what’s going to happen and really like not being able to run after my kids or lift my kids is just like, it’s really hard, like the physio on Friday said that I needed to really try and not lift so much in the next couple of weeks whilst I’m sort of starting from scratch again. It’s, you know, and she did show me how to do it, like safe-, not safely but, you know, support yourself more when you’re doing it but it’s really hard like when my, you know, they want to dance around [upset] sorry just difficult when you’ve got little ones.

 

Eve and her partner have adapted how they care for their baby to accommodate her prolapse symptoms, though the emotional side of coping is still difficult.

So, yeah and the relationship with my partner, I mean he’s been amazing you know, I came back from private physio and I was like, “She’s told me not to lift anything” which I’ve been trying to, which I’m supposed to not really do any, I knew that before she told me on Friday but um, you know, he’s been like picking up the baby and carrying him ‘round for me and stuff which is nice but I’m sure like and this is no criticism of him but I’m sure after a while, he’ll forget because I look normal and I’ll probably just pick up the baby because it’s just what I’m used to doing and he’ll see me doing it and then it will just slip our minds and you know but, he has been like very understanding about it all because, you know, it does affect like me emotionally. I’ve been, I’m like very up and down emotionally and, you know, it affects how I feel about how I view myself, like, you know, what I was saying earlier about feeling a bit broken and just feeling like sometimes you feel like ugly and like unattractive so like, you know, obviously for us it affects things a bit romantically and, you know, he’s very understanding about all of that which is good.

 

Eve asked about the severity of her prolapse when she was diagnosed. This has been confusing, and she’s since asked two different physiotherapists.

So the, my physio, NHS physio, she graded me as like a grade 2 my prolapse and then when I went to see the consultant I actually had to ask him because he didn’t tell me, he was like, “Oh yes you’ve got a prolapse,” and I had to ask, you know like, “What grade do you think it is?” and he said it was like a 1 to 2. I know there’s a 2 in both of those, but I was a bit kind of like, oh so is it, so in my head I’m thinking, ‘Is it a bit better than I think it is or-?’ and I spoke to the private physio about it and said, “Do you know if it’s, like-? Because you know what her view was, and she said like I’m a 2. She said, “There isn’t really like such a thing as a 1 to 2. You can’t really have this in between thing with the way the definitions work,” or something, so and then the consultant had said my uterus was fine but then the private physio said that actually it has descended a little bit so it, yes that can be quite confusing as to like sort of how or good or bad is it.

 

Eve got very constipated when she was pregnant and had to ‘splint’ in order to empty her bowel.

And then when I was pregnant I got very bad, badly constipated and couldn’t, I couldn’t pass it. I mean I did in the end, it probably took something like forty-five minutes and I really did what they tell you not to do and I had to strain to get it out. I also had to what they call splint which is where you use your fingers, well most people use their fingers, you can actually get a device to help support the vaginal wall to get the bowel moment out so and I think that just stretched the skin even more so now whenever, on like the groups that I was talking about, when women talk about their pregnant again for the second time, I’m always just like, “Right, okay look after your bowel health, you know, drink lots of water, keep moving. Like everyone says it but no-one really explains the consequences of like not doing those things, you know, midwifes will be like, “Oh make sure you do pelvic floor and squeeze,” and everyone thinks that’s about just oh a little bit of weeing when you sneeze or stuff like that. I don’t think it’s properly explained but your, you need to strengthen and protect your pelvic floor because it’s literally holding up your organs. I, I that’s just never been explained to, that was never explained to me so yes so keep regular, keep regular and drink lots of water and all those things that keep everything going.” I wish I’d known that because I could have actually potentially prevented that severe constipation which I’m pretty sure that probably is what made it worse second time round.

 

Eve chose to go private to access a cube pessary and was pleased with the empathetic care she received.

I was quite interested in like this, the cube pessary because I’d been looking because for my prolapse that I’ve got apparently the ring one isn’t very good for supporting a rectocele and he was good. In a way he was very open and honest about it, he said he didn’t have the expertise, they didn’t have the expertise in different pessaries that they didn’t use, so they used the ring and other ones and they don’t have the expertise there but if I did get one then they would check it and make sure that I was managing it okay and stuff which, you know, I quite appreciated his honesty. It’s disappointing that like you can’t get that service like on the NHS, so I’ve actually gone privately now. I had an appointment on the other day for a private pessary clinic and there’s, it was just so different the experience like to feel genuinely like listened to and empathised with and, you know, just to have that understanding and like properly fitted for a pessary that actually, you know, taking into consideration the prolapses that I’ve got it was just a completely different experience.

 

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”.

 

Eve felt “shell shocked” by the use of “violent” language and feels that the choice of words is really important, particularly when a person is feeling “vulnerable”.

It was a very difficult experience because his language and demeanour were in my view, quite inappropriate. He swore during, said the f-word a few times during the consultation and he made remarks about my anatomy which made me feel uncomfortable about if I had the surgery and I had another baby that my vagina would get smashed up, you know, really quite crass and like violent language about, you know, what would happen to me potentially and I felt like that could all have been explained a bit better and with a bit more empathy and I just left feeling quite shell-shocked after that experience so didn’t go back.
 
I think just the lack of professionalism to begin with, you know I mean I don’t mind the odd swear word, I mean I’m not like a prude, you know, I am not like conservative about these things like, you know, people swear that’s fine but I think in a healthcare professional when you’re seeing a patient who is potentially like feeling quite vulnerable, it’s just not appropriate to be saying the f-word, it’s just really not and I think that as well, you know, having some res-, I just didn’t feel really respected, like saying, like talking as though my body isn’t a part of me, you know, that it’s going to be smashed up. I mean it literally makes me cringe now, like just the thought, like just the words, you know, that you know, that’s me, that’s like not a thing like you’re talking about, like me, I’m, you know, and quite a sensitive part of my anatomy. So there just was a very distinct lack of empathy I think, understanding, like context of like what you’re doing, like what are you, like, you’re here talking to a woman who’s really going through something and, you know, how you’re explaining things, just yeah it was pretty, pretty appalling and it just made, like the experiences just made me completely disengage like from like the healthcare service as such.

 

Eve encourages others to “keep reaching out”, even when this feels really difficult.

I guess it would be to not give up even though it really may feel difficult at times, like if you’re, if you’re struggling to get people to listen to you to try and get that second opinion and try and reach out to someone else and reach out for help, that’s you know, elsewhere if needs be, don’t just, don’t just accept what you’re being told if you feel deep down that there’s something that isn’t right and just keep, keep going even though it feels, might feel hard at times. I think that would probably be. It sounds a bit clichéd doesn’t it but like I think, I think it’s so important, I think we just, we tend to, if we’re told, “No” or go, “Okay” and we don’t listen to ourselves and how we’re feeling and then it makes it harder to trust someone else with how you’re feeling but I think you’ve got to try and keep reaching out to get these things sorted.