Elly
Elly has been diagnosed with a prolapsed uterus, a cystocele (prolapse of the bladder into the vagina), a rectocele (prolapse of the rectum into the vagina), and a mucosal bowel prolapse following a traumatic birth. She struggles with stress incontinence, constipation, and pain. Elly feels that these problems are having a negative effect on her mental health.
Elly is married and lives with her husband and two children aged 2 and 5. She works full time as a store assistant. Elly describes herself a White British.
Conditions: pelvic organ prolapse, stress urinary incontinence
More about me...
Elly’s symptoms started following the birth of her second child. Over the last two years she feels that she has not always been taken seriously in NHS healthcare and has felt a reluctance from healthcare professionals to thoroughly examine her. After feeling like she was getting nowhere, Elly made the decision to see a private urogynaecologist who has now clarified her diagnoses. It was only at this point that she has started to see some light at the end of the tunnel.
Elly describes the emotional impact of living with prolapse and says that it has made her question her own identity. She feels that her life is lived in a limited space near the toilet, and this has had an impact on her work, leisure, and relationships. Although Elly has the love and support of her husband and mum, at times she has felt very alone. It has therefore had a big impact on her emotionally.
Elly feels that women’s health issues are taboo and that living in silence means that women are not empowered to discuss and deal effectively with their symptoms. However, since finding other younger women with prolapse through the internet, she is starting to turn a corner. Her breakthrough was realising that she was not alone. Elly passionately feels that we need to remove the shame and stigma from urogynaecological conditions, and welcomes the opportunity to talk publicly. She does not want other women, including her daughters, to have to “battle through the lines” or to feel shame about their own female bodies.
Elly feels that the emotional side of living with prolapse is important and often overlooked.
Elly feels that the emotional side of living with prolapse is important and often overlooked.
I find that there’s not any emotional support whatsoever. It’s like you’re given this massive blow and then you’re left to think about it on your own. It affects me every aspect of your life. Your day to day living at home. Physically, how you feel. What you can do. It affects your relationships, all of that is going to eventually have a knock on effect on you emotionally. I don’t know if I feel like I’m not the person I used to be. I think that’s one of the big things. I don’t feel attractive any more. I feel like I’ve lost myself quite a lot since being diagnosed with my prolapses. I think just I’ve felt quite lost. I’ve felt quite alone and no one really to talk to about that. It feels like, it feels like a life sentence. I’ve been told that I’m going to struggle for the rest of my life with pelvic problems, surgery or no surgery, I will still have problems in the future. It is a big thing to be told that you’re going to live the rest of your life struggling with a problem to have no other emotional support there.
Elly’s job involves heavy lifting. Her GP will only write short-term light duties notes, and so her approach has been to “just crack on”. Her colleagues sometimes make comments about how often she goes to the toilet.
Elly’s job involves heavy lifting. Her GP will only write short-term light duties notes, and so her approach has been to “just crack on”. Her colleagues sometimes make comments about how often she goes to the toilet.
My job involves quite a lot of heavy lifting. When you say you work in a supermarket, most people think you just sit on a till for the majority of the day. That’s not the case where I work. We’re quite a target driven environment. We have to work to a speed and get things done so it does involve a lot of pulling pallets along with jacks, lifting heavy trays and crates up, which I found very difficult to do and I shouldn’t really be doing and it’s very uncomfortable. If I am on my feet all day, it makes my symptoms a lot worse but that actually also comes up to the fact of my GP has refused to write me a long term light duties note. So I have to go back every four weeks to have a light duties note from the GP but it’s incredibly difficult to one, get an appointment at the GP. Speak to the GP, which in turn has left me thinking, do you know what? I’ll just crack on and get on with it. I mean with the fact that I go to the toilet a lot at work, it’s kind of become a little long running joke like, “Ooh, Ellie’s off to the toilet again.” “Oh, there she goes again.” Which I’m okay with because I feel like at least it normalises it a bit. Like it’s a joke that, “Oh there she goes. Another loo trip.” I don’t feel like there’s any malice in us making a joke about it. But it is very difficult with your workplace to discuss those kind of, it’s talking about your woman’s areas that you wouldn’t really discuss with many people normally let along your male bosses. It makes it very difficult to have that open conversation.
Elly has a silicone ring pessary which she wishes had been offered to her sooner before her prolapse became worse.
Elly has a silicone ring pessary which she wishes had been offered to her sooner before her prolapse became worse.
So maybe if you were offered a few more, you might find a better fit more quickly. I have actually got a silicon ring pessary in now which I had fitted when I saw the uro-gynaecologist. It, it’s helping with some symptoms slightly but I still have a bulging feeling but I do feel like, that’s because my cystocele is so big that I feel like I maybe past the point of a pessary massively supporting it. But my symptoms have improved like my back pain feels a lot better so I feel like if maybe I’d been offered a pessary at stage one, I’d be, I’d been a year nearly before I was even offered a pessary, maybe if I’d been offered one quite quickly and I was at that stage one and things hadn’t prolapsed, it probably would have prevented things prolapsing more and I probably wouldn’t have been as uncomfortable. As I have been but it took such a long time to have been offered one I guess I kind of thought, well if they were any use, she would have offered me one a long time ago and maybe that isn’t the right way for me to look at it but that’s how I was but I feel that I became quite negative to the situation at this point. I feel like I’d had a lot of setbacks. A lot of, “You’ll be fine.” “It doesn’t cause pain.”
So, you just get to that point where I feel like you go to an appointment expecting the worst anyway that you think, what’s the point of coming if you’re just going to say the same thing.
Elly thinks that there should be an automatic referral for physiotherapy for those showing signs of prolapse after giving birth.
Elly thinks that there should be an automatic referral for physiotherapy for those showing signs of prolapse after giving birth.
I personally think that, if a woman at her six-week check shows signs of having a prolapse, there should be an automatic referral to physiotherapy and you should be seen by a physiotherapist within a timescale and you should be given an intensive course of physiotherapy, which is probably a lot to ask. I know things cost a lot of money but I do feel like, if you’re going to correct prolapses through physiotherapy, the only way you can do that is when they’re at very early stages and by having intensive physiotherapy very quickly so a twelve week programme of weekly visits to the physio. Very early on would probably actually help things get corrected instead of saying, “Come back in six months’ time. Come back in six months’ time.” And by that time, you know, you’re stage three prolapsed.
Elly feels like she was sent off on her own to do pelvic floor exercises after her post-natal check. She thinks her prolapse worsened in part because she didn’t know how to do the exercises correctly.
Elly feels like she was sent off on her own to do pelvic floor exercises after her post-natal check. She thinks her prolapse worsened in part because she didn’t know how to do the exercises correctly.
And it, I was also told, from six weeks, to go away, do pelvic floor exercises, that will sort you out, you’ll be fine only to find in my first physio appointment that I actually cannot do a pelvic floor exercise correctly, which is probably not helped the fact that things have got worse with my prolapses because I’ve been working for two years on them but not been working correctly so I feel like if I’d been offered the help maybe sooner. I would have discovered that I wasn’t doing them correctly and I may not have got to the point that I’ve got to with my prolapses, so yeah.
Elly would like to have surgery for her prolapses, and has considered the possible risks and limits.
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.
Elly feels a mix of frustration and acceptance about her future living with prolapse.
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.
Elly doesn’t understand why the health system is not set up to refer prolapse patients directly to urogynaecology, after being first referred to a bladder and bowel nurse and then to a gynaecologist.
Elly doesn’t understand why the health system is not set up to refer prolapse patients directly to urogynaecology, after being first referred to a bladder and bowel nurse and then to a gynaecologist.
So I had an appointment come through for an incontinence nurse. Now at this point, I wasn’t struggling with incontinence at all. So I went to the appointment. I sat down and the lady was very much shocked why is this young lady is in front of me. She actually said, “I don’t know why they’ve sent you to me. I can’t really do anything.” She also said she wasn’t allowed to examine me because it wasn’t in her realm of what she did so she did a bladder scan on me and she made me an appointment for another couple of weeks’ time, which I went to again. She said, if I was still struggling, she’d try and refer me on to the next lot of people. And I think I had a third appointment with her and then I decided this isn’t the right people to be seeing. So I went back to the GP and again, it was, “You’re very you’re very early to having given birth. Just give yourself time and see what happens.”
And when I saw my NHS gynaecologist a few weeks ago she said to me, “I wasn’t sure whether to keep the appointment.” Because she’d received all the letters about this MDT. She said, “I’m not sure I’m the right person for you to see. I don’t know whether to refer you over to my uro-gynae person.” So I’ve obviously got to that point where I’ve got so much going on that they are thinking of referring me over to uro-gynae but if uro-gynaecologists are the best people to see for prolapses, why aren’t people with prolapses straight away referred to uro-gynae. Why do we have to just jump through two years of hoops of seeing gynaecologists who can’t, and it’s not, maybe it’s not everyone’s experience, who can’t grade a prolapse correctly to then be told, “Oh well maybe maybe now you’re being discussed in pelvic floor MDT. Maybe you do need uro-gynae. Maybe this is out of my realms.” Gynaecologists can do so many other things that surely the referral should be automatic to uro-gynae for prolapse issues because they are seemingly the only people who really do understand the full implication of the problem.
Sharing details about personal health concerns with receptionists made Elly uncomfortable, especially as she sometimes saw them through her work.
Sharing details about personal health concerns with receptionists made Elly uncomfortable, especially as she sometimes saw them through her work.
The only other thing I really had is when I called up my GP practice, I had a receptionist insist that she had to know what was my problem before she could get me an appointment with anyone. Now I understand that it’s important so they know maybe if you need to see a nurse or a doctor, but some things you don’t want to tell a receptionist who I might serve when I’m at work in the supermarket. That that to me, I’ve seen all of them coming after work, and served their shopping and they might now know it’s me on the phone but I know I’ve spoken to one of them and that’s uncomfortable. You know with your doctor you’ve got that private and confidentiality and I know you should as a receptionist but there’s that feeling of is there so much of that with them.
Elly thinks that taking the time to understand what someone is going through is an important part of healthcare as “we are not a problem in a medical book”.
Elly thinks that taking the time to understand what someone is going through is an important part of healthcare as “we are not a problem in a medical book”.
You know, I think that’s what, I think on the daily front of looking after people, I can’t complain about what they do but I think the one thing that sometimes is missing in the healthcare is, especially women’s healthcare, is the understanding and the time. I come back to that feeling like everything is fluff, like, ‘Ooh, let’s just be quick.’ Let’s go round the subject quickly because we don’t want to talk about women’s health and it’s just, it’s that time and that understanding of what somebody is going through and how that can actually impact their life. Like it’s a problem on a piece of paper and it’s a problem in a medical book but, when somebody is experiencing that problem, that’s real for them. It’s their lives it’s having an impact on every aspect of their life and, you know, it’s not a page in a book. It’s a person and that person needs to be heard and needs to feel like they’re being supported physically, emotionally, and I think that sometimes what’s missing a little bit.
Elly does not want her daughter to grow up being ashamed of her female body.
Elly does not want her daughter to grow up being ashamed of her female body.
It’s like a taboo and maybe the message to the public needs to be that actually, as a society, we need to be much more open to talking about women’s health and things that may feel uncomfortable and embarrassing, but we don’t want it to be uncomfortable and embarrassing for the next generation. So as parents, carers, teachers, we should actually all, as women, stand together and talk about these issues however hard and embarrassing we find it so that our kids and their kids don’t have to feel the shame that we have lived with. I don’t want my daughters to grow up and this happen to them and them feel ashamed and embarrassed like they’ve got a black cloud over their heads that nobody knows about. So maybe, as a society, we should stand together and all women, and men as well, should, you know, husbands deal with it with their wives. We should all stand together and not be ashamed of what we’re going through and make it less of a taboo.
Elly wants people with prolapse after giving birth to know that they are not alone and encourages them not to be ashamed.
Elly wants people with prolapse after giving birth to know that they are not alone and encourages them not to be ashamed.
You’re not, you’re not on your own. You aren’t on your own. Like you feel on your own at the beginning and it takes a long time to realise that you, you know, this could happen at any age to anyone. It can happen after giving birth and you’re not the only person it has happened to from giving birth. And there is light at the end of the tunnel. It’s a difficult journey and hopefully it won’t always be as difficult as a journey as it is or has been for me but there is light and I’m just starting to hopefully see a glimmer of light. And we will get through it and we’ll find ways to live our lives more normally and they’ve just got to stay positive. And know that we’re in it together. Like we’re not the only ones and it’s okay to talk about it. We shouldn’t be ashamed of our bodies. We shouldn’t be ashamed. It could happen to someone you’re sat next to and you don’t know who. You just don’t know who it has happened to so we should all be more open and more comfortable to speak about it because it is normal even if we feel like it’s not normal.