Sacral Agenesis – Estelle’s Story
In this video for Catheter Week, Estelle Stevens, 37 from Devon talks to the Bladder and Bowel Community about growing up experiencing bladder incontinence due to her disability Sacral Agenesis, the importance of normalising conversations around catheters and peeing and that there’s no reason to feel ashamed! For those of you with impaired hearing or prefer to read, we’ve included Estelle’s story below.
“My name is Estelle, I am 37 years old, I live in Devon in the South West of England. This week I am celebrating Catheter Week with Bladder and Bowel Community, just trying to raise a little bit of awareness, reduce that stigma, because everybody at some point is likely to be affected by incontinence or have to use a catheter. It’s incredibly likely that you or a loved one is going to have to go through this. So it’s really important to reduce that stigma, and it isn’t just older people or people with severe disabilities that are going to have to have catheters in some way shape or form, it can affect everybody. And a lot of people, you wouldn’t even know that it affects them.
It’s really important to reduce that stigma, reduce that fear and encourage people to go and seek help if they’ve got bladder issues because a catheter could potentially change your life
So alongside the Bladder and Bowel Community, I’m going to be just talking just a little bit about myself, why I use catheters and how they have affected my life basically.
I have Sacral Agenesis and was diagnosed at birth, so at the time of my diagnosis Sacral Agenesis was really rare in the UK – it is overall a very rare disability – I’m so unique 😉 – It’s much more prevalent in the US than it is in the UK. Sacral Agenesis is quite a broad disability and it can have varied levels of severity depending on how much of your spine is missing – so I have the lower portion of my spine missing, so basically the lower portion of my body is affected by Sacral Agenesis. Some people find that their bladder is more affected, or their bowels, and some people find that their mobility is more affected. Mine is more of a 50/50 split for me I would say. Due to the part of my spine that is missing, so the nerve endings and brain signals that would control my bladder and my bowels just don’t work, they are not there, so my bladder is ‘rubbish’ doesn’t work, my bowels are pretty c**p too
So I have to use catheters because I cannot personally tell when my bladder is full or when I need to pee and also due to some of the surgeries I’ve had, I actually cannot pee naturally so the only way I can empty my bladder is via a urethral catheter.
Like I said we found out about my condition from birth and when I was born they weren’t really sure how it would affect me in the future. I think at one point my parents were told I wouldn’t be able to walk (and I showed them!) but it was a sort of ‘play it by ear’ kind of a situation, they weren’t really sure what the future was going to hold for me and how sacral agenesis was going to affect my life.
As it was, I have a number of mobility issues that I have had a number of surgeries for.
My most recent orthopaedic surgery was in 2020, I’ve talked a lot more about how Sacral Agenesis has affected my life and some of the procedures I’ve had I’ve talked a lot about them on my YouTube channel so if you want to know more feel free to head over there and have a look.
I can’t really remember a lot of how incontinence affected me before I was 15. I know I suffered from incontinence a lot, I would have a lot of accidents and had to wear incontinence pads, and it wasn’t great, it wasn’t ideal, it was a tricky time, and I think I’ve shut quite a lot of that out of my brain because I don’t really remember it if I’m honest.
And then when I was 15 because I was having a lot of UTIs and a lot of incontinence issues I had my first bladder and bowel surgery.
I had a ‘clam ileoplasty’ where they basically take a portion of your bowel out and then it is stitched into the wall of your bladder and it basically makes your bladder bigger, gives your bladder more capacity so you can hold more pee in and which is designed to reduce incontinence. So from the age of 15 I then had to self catheterise because that was the only way I was able to empty my bladder.
In those first years following my bladder surgery I don’t think I looked after myself particularly well, I wasn’t terribly keen as a young teenage girl at an all girls school on the idea of catheterisation, I will say it did take me a few years to get my head around it from a personal point of view, I’ve suffered a lot of medical traumas so some of it was quite hard to come to terms with. I will say, once I got into the swing of things, absolutely I can look back now and say, that surgery when I was 15 changed my life. It made my life so much easier, and just carrying catheters around was certainly not the big deal I thought it was. And then everything was fine and dandy with that surgery, my bladder worked really well, the catheterising worked really well, up until I started to approach my mid thirties I would say.
Then I started to get sort of a lot of recurring UTIs, I had so many UTIs! I was finding I was having to get up four times a night to wee, I was having accidents, a lot of issues with incontinence despite the number of times I was having to catheterise, I had to have a whopping great bladder stone removed at one point which they think was caused by the sheer number of bladder infections I’d had.
I got in touch with my GP, and I got in touch with my urology team and I had a number of different examinations and tests done. Ultrasounds, I had a couple of cystoscopies, a cystogram, I had a big urodynamic test done and I also had some bowel investigations done during this time where they discovered that I had colitis so it was an exciting few years for my bladder and my bowel.
But eventually I was diagnosed with quite significant kidney reflux, to both kidneys, and my kidneys aren’t great anyway they are quite a lot smaller than they should be and one is smaller than the other. And I love hearing every time I have an ultrasound “Are you sure you’ve got kidneys?” – Yes I’m sure! Unless they whipped them out when I wasn’t looking, they are definitely there.
So after all these investigations and the sheer issues I was having with continence and infections and bladder spasms and pain, they offered me a couple of different options.
- I was offered to just leave it and live with it – not an option.
- They offered me botox, where basically every 6 months or so depending on how well it takes they inject botox into your bladder walls and this is designed to help stop those spasms, and can really help with incontinence, it’s a really non-invasive way of helping with incontinence issues.
- I was also offered a couple of different types of surgical options and the option that we went with that seemed the most long term solution for me, and was slightly less invasive than having my entire bladder – and my ovaries – removed; the option they offered me was to have the clam ileoplasty removed and a bladder augmentation which is where they take a strip of your stomach muscle and they patch it in under your bladder to hoik the whole thing up inside which can help with stress incontinence and bladder weakness. So that was the option we went for
And then I had that surgery in May 2021. So after that surgery the recovery was a bit of a long haul, and I’m still recovering from that surgery now, eight months on. It was a really successful surgery, and since then I’ve had maybe one or two incidents, I’ve had a few UTI symptoms but nothing overly significant and actually, the surgery has gone well and I’m really pleased with that surgery.
And I’m also really proud of myself that I can talk about it so openly now!
I still catheterise every time I need to pee because as before I can never tell when my bladder is full or when I need to pee and I cannot empty my bladder naturally, I have to use a catheter to empty my bladder every time I want to go to the toilet.
So not a lot really has changed for me since my operation other than I don’t wee myself on a regular basis I guess!
I’m not really undergoing any treatment at the moment, I do have to make sure I flush my bladder out a couple of times a week because so much of my bladder is made up of my bowel, it produces a lot of mucus because wherever you put bowel, it still thinks and acts like bowel so it still produces like your bowel would. Because I have colitis, if I have a colitis flare up that can really affect my bladder as well which is weird and no fun! I’m not on any treatment as such, other than the bladder washouts, which I undertake by myself at home with a catheter some saline and a 50ml syringe. It’s really easy, I’ve talked about bladder washouts and flushes from different types of catheters before on my channel if you want to know about things in more depth, you can check out my channel on YouTube.
There are different treatments out there, like the botox treatments I mentioned earlier and there are medications you can take to help with incontinence and bladder spasms and obviously antibiotics for when you have UTIs, so there are a lot of treatment options out there that you can explore with your GP or if you have a specialist team.
I will just stress at this point – don’t suffer in silence – I know for a lot of people, especially younger people, it can be really embarrassing to talk about and admit and discuss that you have incontinence issues but there are so many treatments out there that there is no need for you to be ashamed. So don’t sit on your problems – if you notice that you have issues, or your bladder habits have changed, then please seek medical advice because the chances are there is something out there that’s really easy, that’s going to help you. It’s one of the reasons I talk about pee so much!
I really want to help other people and raise awareness and say it’s nothing to be ashamed of. Everybody pees, however they pee! Everybody pees.
A lot of people do have issues and keep quiet and don’t talk about because they are ashamed, they are embarrassed, and there is absolutely no need to be.
Don’t sit on your issues, please, if you’ve got any problems get out there, get help, seek advice and talk to people.
It’s really important to not be afraid of our natural bodily functions.
Like I’ve said a few times I catheterise, and have done since I was 15, and the catheters I have used since I was 15 are hydrophilic coated. That means they have a coating on them, that when it gets wet, they lubricate basically which means it’s a lot easier to use the catheter. It makes it a lot easier to insert into your urethra, and once you’ve used it you throw it away. They are single use, sterile packaged – you open it, use it, throw it away and this is what I’ve used since I was 15. These are 10 french which refers to the diameter of them, and there are different types, different lengths, different diameters, there are loads of different catheter options out there if you’re looking to intermittently catheterise like I do. I get mine on prescription so when I need more I just get in touch with my GP and we do a repeat prescription for them and they usually arrive really quickly. So that’s what I use on a daily basis.
I have tried a couple of different types of intermittent catheter including ones that come pre-lubricated – didn’t like those. I’ve tried different diameters and I’ve tried different lengths but this is always what I’ve gone back to. They are great for me, they work really well and the output end fits into the syringe which I use for my flushes really well.
But there are huge amounts of options out there and you can speak to your GP, you can speak to your Urology Team if you’ve got one, and they can help you find out what the best catheter for you is as well.
In addition to the intermittent catheters I have also had suprapubic catheters and I’ve also had indwelling, so it’s really important to discuss with your GP and things just to see what catheter is going to be best for you.
All catheters do have issues, there is obviously an infection risk but as long as you take care and know the signs and symptoms to look out for you and you’re hygienic in your approach it’s quite a minimal risk.
So when I was 15 and I had to first start catheterising I was designated a very lovely specialist nurse – she taught me how to catheterise, she gave me some tips and tricks at the time. I had her number to call any time I had a problem which was really good. I didn’t appreciate at the time having to sit on a toilet at the age of 15 to pee in front of somebody, but looking back I know that it was great and it made such a difference. I’m just so grateful to her, for the difference she made to my life and for the tips and tricks she gave me at that time, really held with me. I laugh about them now because I still use one particular tip that she gave me.
I have a bit of a personal issue for when I catheterise, for if I’m angry, or stressed or upset or unwell, I find it quite hard to insert the catheter – the more I cannot get it in the more stressed I get. I get upset and I find it quite hard sometimes to get the catheter in. I’m quite an anxious person anyway, so that anxiety makes it a lot worse.
One of the tips she gave me when I was 15 was – as I insert the catheter I have to pretend I’m blowing up a balloon and it still, every single time works.
So that information and advice she gave me back when I was 15 was brilliant and I am so grateful to her and I’ve always remembered it and I still use it now.
I was provided with a lot of information back when I first started and it’s unlikely that you would have to start self-catheterising without information of some kind. I have access to a specialist urology team, I’ve had probably since I was about 14 or 15 I’ve had a specialist urology team, and they are really great.
My specialist nurses give me a ring every six months just to check on how I’m doing, that’s here in Devon, they are really great. They’ve helped me out with bowel issues, they enabled me to get my colitis diagnosis, and they were very instrumental in starting the process for my last surgery to ensure the issues I was having were sorted.
I have a great urology team, I have a designated urology specialist nurse, and I also have a specialist urology team in Bristol so I’m able to call my specialist nurse in Bristol or here in Devon any time I need and they are always on hand to offer me advice and help me try and find a solution to any problems I might have because whilst catheterisation is second nature to me now, and it is really easy, sometimes you do need or want to talk to someone who has that specialist knowledge, so it’s great having that access.
It’s really good knowing I’ve got that back up as and when I need it.
It’s been in the last couple of years that I’ve felt confident enough in myself to start talking about bladder issues and be open and honest about them. I’ve always been, like many, really scared to share my issues and talk about them but I’ve gotten to the point in my life where I’m like, no, if I talk about them, if I’m open and honest about the things that happen to me on a daily basis, I can help someone else that doesn’t have to go through the shame or embarrassment or stigma or non-awareness, if I can help them out sooner by being open and honest about it I think that’s a really good thing.
And that is one of the reasons that I talk about pee so much. I just want to help other people. It’s nothing to be ashamed about, it’s nothing to be embarrassed about and there is help out there for you. Talking about it, laughing about it, I hope to help someone else come to terms and get help sooner. That’s my main goal really.
The thing about catheterisation is you don’t have to tell anybody if you don’t want to. Catheter bags, and catheters and suprapubic devices, all of those sorts of things can be really discreet and if you don’t want to tell anyone and if you don’t want anyone to know, people don’t have to know. Something I worried about for a long time was that, people were going to know; people are going to think it’s weird that I take so long to pee; they are going to see my suprapubic; they are going to know if I have a catheter bag on as I smell like pee all the time. And those are completely unfounded worries.
Having a catheter has never affected any of my relationships, up until the last couple of years nobody except for my immediate family and my husband knew about my catheters and about my disability and how it affected me and how I have to catheterise and I think I only told my now husband when we first got together when it was becoming serious and we were going to live together and was the first time I explained to him that I used catheter and what they were.
For many years I couldn’t even say the word ‘catheter’ in front of him I would say ‘stuff’, I physically couldn’t say the word catheter to him and it’s only really been in recent years that I’ve talked about my pee to my husband a lot more. Because he loves me – I hope! – and he’s as big a part of my life as catheterisation is so why wouldn’t I tell him. But it’s certainly never affected our relationship. And other people I’ve told, like when I’ve had to tell work colleagues, when I’ve had to explain it to friends, nobody ever really batted an eyelid and more than anything they had questions. That was really nice and it was really nice that they had questions and we were able to talk about it and I was able to help explain. That was really good.
It was such a release. And all that pent up anxiety about the shame and stigma behind catheterisation which is gone because I was able to talk about it so openly. Catheters have never really affected my relationships with anyone.
I think a lot of what holds us back is our own fear and hangups. But I’m here to tell you that it’s ok to talk about pee all the time! It’s a natural bodily thing, and I think more people than you realise have to catheterise, and the more we talk about it I think the more we’ll get away from the idea that it only happens to older people because it very much affects younger people too, and the more we talk about it the easier it’s going to be for a new generation to come to terms with their disability. To seek help sooner. And to know that they are not alone.
There is a lack of information out there, and I will say that from an incontinence point of view that I find it incredibly frustrating that adverts are very much aimed at an older generation, or perhaps, women who have given birth because that’s not the case. Incontinence issues and the need for a catheter can absolutely arise at any point in your life. You don’t have to be older, you don’t have to have had a child, you don’t have to have a severe disability to have to use a catheter or to have incontinence issues and that’s something I would like to get out there more too. I’d like to see incontinence product adverts aimed at younger people, I’d like to see adverts for ostomy products on TV more, I’d like to see it talked about in mainstream media. I think that would make a real difference to people’s lives, if there was more information out there.
I think we should absolutely acknowledge that people who use catheters are a much broader spectrum of ages and different types of people and I think once it becomes more mainstream, once it’s talked about more, that’s obviously a positive thing.
I would like to see more information aimed at younger people, and that would be really helpful for younger people out there who may be starting their catheter journey.
I think I’ve waffled on quite enough! Like I’ve said it is catheter week and it would be really good to raise some awareness around catheters and the different types of people that use them and the many different reasons that you might use a catheter.
Thank you to the Bladder & Bowel Community for including me in this, I hope I’ve done a little bit to help raise some awareness and I really really hope (little old me!) I can reach somebody who might feel some stigma and embarrassment around it.
Thank you for watching, and if you want to get in touch you can find me as Estellosaurus on Twitter, Instagram and YouTube.
Navigating life with a catheter can feel overwhelming at times, which is why the Bladder and Bowel Community have launched a Catheter Care guide to help answer those tricky questions you may have. Follow the conversation on Social Media with #CatheterWeek and get involved with any comments you may have.
Download your Catheter Care Guide here.
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