Alongside being a UK reality TV star, businesswoman and mother (among many other things), Marnie Simpson knows exactly what it’s like to experience chronic UTI and has struggled with UTIs since she was 17 years old.
Now 28, her UTIs have been chronic for the past 4 years, leaving her in constant pain, sometimes bedridden and unable to care for her infant son.
Marnie has launched a series of four videos in partnership with Live UTI Free, to open up about her chronic UTIs and encourage others to do the same.
UTI is the most common adult bacterial infection globally, and 1 in 2 females will have a UTI in their lifetime. Some, like Marnie, can suffer from chronic UTI for years. For an issue that’s so common and which can be so debilitating, UTIs are not talked about nearly enough.
Video 1: Marnie Simpson Talks UTIs With Live UTI Free
In the first video of the four part series, Marnie and Crystal discuss their experiences with UTIs, the various misdiagnoses they’ve had, and what it means to be a chronic UTI sufferer.
Video 2: Marnie & Crystal on the Impact of Chronic UTI on your Wallet and your Relationships
Marnie and Crystal chat about the financial impact of chronic illness, and how the support of friends and loved ones is crucial.
Video 3: Marnie & Crystal on how Chronic UTI can Affect your Mental Health
Chronic UTI may be a physical illness, but the impact on mental health can be significant. Marnie and Crystal share their experiences on how chronic UTI affects their everyday.
Video 4: Marnie & Crystal on Finding the Right Doctor for Chronic UTI
Finding the right doctor for chronic UTI treatment is often a long and difficult journey. Marnie and Crystal have both been there and offer some words of advice for others in the same place.
For more information on chronic UTI research and treatment options, start with the articles below:
Video 1 Transcript: Marnie Simpson Talks UTIs With Live UTI Free
Crystal: I’m Crystal from Live UTI Free and I’m here to talk with Marnie about our shared experience with chronic UTIs.
Marnie: Hi everyone, so obviously me and Crystal have both suffered with chronic UTIs, and this is something that we are wanting to get the message out there. There’s so many young girls who are suffering like us and this condition is really poorly recognized. So we just wanted to do a video to kind of talk through it and just get a bit more awareness about it.
Crystal: So how long have you been suffering with chronic UTIs?
Marnie: So I’ve been suffering since 2016. Before that I used to get recurrent UTIs. I think I’ve suffered with on and off UTIs since I was 17. I just think it’s something that I’ve always experienced. How about you?
Crystal: It’s similar. I kind of had my first, very dotted, rare UTIs when I was about 16 or 17. And then when I was 18 I had my first UTI that didn’t go away and was classified as recurrent at that time. So I had that for about a year and a half, then it went away. And then for the past 4 years now, since December 2015, I’ve suffered pretty constantly with a chronic UTI.
Marnie: It’s so bad. I think what it is about chronic UTI that a lot of people don’t know is that it’s just like having a UTI but constant. And if you don’t know about chronic UTIs it can be really scary, can’t it?
Crystal: Absolutely. And I think, you know, the current statistics suggest that at least 50% of women have at least one UTI at some point in their lifetimes. But in reality it may be that a significant proportion of women have them recurrently. Whether they’re classified as a recurrent UTI or Interstitial Cystitis…
Marnie: I got diagnosed with Interstitial…I can’t even say it… Interstitial Cystitis. But it turned out to be chronic UTI. But they’re both really hard to treat, but they are treatable, so that’s really important to know.
Crystal: Yeah and there’s different diagnoses that people could have had. Like initially we just thought that I had UTIs that kept coming back, so more of a recurrent problem, rather than what I now know is more of a chronic, embedded UTI. And when you have a chronic UTI, the bacteria can live either under a biofilm in your bladder.
Crystal: A biofilm is similar to what kind of holds plaque on your teeth, for example. It can also, bacteria can live intracellularly in your bladder. So that is what is suspected to be my condition, which is why it’s so hard to treat. But many other women, like Marnie, may have had other diagnoses such as Interstitial Cystitis or just thinking that separate UTIs are being triggered or coming back, when in reality, kind of a growing body of evidence suggests that these may in fact be chronic or embedded UTIs.
Video 2 Transcript: Marnie & Crystal on the Impact of Chronic UTI on your Wallet and your Relationships
Crystal: So one thing we wanted to discuss was the cost of being chronically ill in the long term. So a lot these practitioners, they’re either not on the NHS or if they are, it’s very long waiting periods so you’re forced through private routes. It just has a massive impact on your financial state.
Marnie: Yeah, there’s only like a handful of specialists in the UK that deal with chronic UTIs and they are really expensive, so we’ve been lucky to be in the position that we’re in but there are some girls who are suffering who aren’t able to afford these specialists. So that’s why we’re trying to raise awareness so that it can be recognized by the NHS and girls don’t have to suffer like we have.
Crystal: And on top of your costs of just your appointments and your official prescriptions, there’s also then the alternative methods, supplements, dietary changes, lifestyle, alternative treatments, that you know when you’re in a state of constant, agonizing pain, you will try anything, understandably.
Marnie: I have.
Crystal: And the cost is just so, so high. So what do you think the impact has been on your family and your partner, Casey?
Marnie: I think with Casey it’s just been really hard because he can’t really help us and he wants to. All he can do is support us and he’s been unbelievable, he’s been a massive strength for me through the birth of Rox and just looking after Rox. Some days I haven’t been able to and he’s helped so much.
Marnie: I think with my mum it just upsets her. She just doesn’t want to see us sad. She doesn’t want to see us down. My mum just wants to see us living my life and sometimes I can’t do that so I think that’s why she just really struggles. But I think the support that we can get from other people is really, really crucial.
Crystal: So if you or a loved one has been affected by chronic UTIs we’d love you to share your story with the hashtag #liveutifree, on Instagram or Twitter or any other medium that you prefer. Realistically, what we’re trying to do is start a movement.
Crystal: Where these kind of problems come out of the shadows and into
the light in the hope that we’ll get more attention and that will lead to more knowledge and awareness.
Marnie: We don’t want girls to kind of go through what we have, with bad doctors. The amount of doctors that I’ve seen where I’ve gotten nowhere and I’ve been turned away. I know a lot of people can relate to that type of thing but when you’re suffering and you’re in pain, it’s the worst situation and you just don’t know what to do. So if there’s more awareness about chronic UTIs, then other girls won’t have to go through what we have.
Crystal: Absolutely. As Marnie said, it will lead to better understanding by GPs and general medical professionals and hopefully lead to there being more specialists and more treatment options in the UK and abroad.
Video 3 Transcript: Marnie & Crystal on how Chronic UTI can Affect your Mental Health
Marnie: So one thing that I’ve really struggled with that comes with this condition is my mental state, my mental health. I think this condition specifically really affects your headspace. It can get you really down, get you depressed, because ultimately you can’t leave the house, you’re bed bound, you’re in pain, you’re scared to go out because there’s no toilet there. It can just really restrict you from doing normal day-to-day things and I think that’s what really, really affects your mental state. Is that the same for you?
Crystal: Yeah, absolutely. I think for me it’s just when you’ve been in pain for so long and for me it’s been continuous for years and years now, it’s just very hard for your body to kind of rest and relax, and you’re in a heightened state of kind of anxiety.
Marnie: Anxiety’s a big one as well.
Crystal: Yeah, absolutely, about your condition and about also how it’s affecting other people. So I worry a lot about the effect of my condition on my social life, my friends and my family, you know, from people that I consider close friends you kind of get comments such as “Oh, you’re still sick” or, if I haven’t done something, “Well why haven’t you done that – oh – it’s still the same thing is it?”
Marnie: And you can’t do much as well.
Crystal: Yeah, exactly.
Marnie: You have to cancel on people a lot, because it’s quite unpredictable, the condition, and sometimes you can wake up great and have a good day, sometimes you can wake up really bad. It’s just, you don’t know where you’re at, so I’ve cancelled on so many friends with plans, I’ve cancelled holidays and it’s just that not many people can understand.
Crystal: No, absolutely, and I appreciate that they shouldn’t understand, but it’s really, especially in young people that haven’t maybe experienced chronic health issues as much as maybe older generations, or as people do as they get older, there’s a real lack of empathy from people our own age in understanding around your limitations because they just can’t, you know, rationalize what you’re going through.
Marnie: Yep. And also, like, a lot of people struggle with hope, and I think I’ve struggled with that thinking I’m going to be like this forever and that there’s no solution and there’s no cure and I’m doomed. That’s literally what I’ve had such a bad outlook on it and that needs to change because we’re not doomed, there is definitely some light at the end of the tunnel, and there are so many of us who are all in the same position.
Marnie: Through my platform and the website Live UTI Free, we are going to try and raise awareness and we’re just going to try and help so many people that suffer like us. So we’ll do our best to do that.
Video 4 Transcript: Marnie & Crystal on Finding the Right Doctor for Chronic UTI
Marnie: I’ve seen so many doctors, urologists, specialists, that have just been so rude, haven’t helped, turned us away, just not helpful at all and it took us a really long time to get where I am now with a really good doctor. It’s really hard especially when you don’t know, you don’t know where to look, so I’ve been really, really fortunate to find a really good doctor.
Crystal: Absolutely. And one thing that I’ve faced a lot, from not only GPs and more general practice doctors, but also from urology specialists and from other practitioners that I’ve visited in desperation, is I’ve faced a lot of upsetting comments. So I’ve had appointments with doctors and supposed specialists where they’ve said things along the lines of “Oh well UTIs are just from suppressed anger” or “It’s all in your head” or, I went to one appointment with a GP about chronic symptoms and to get some medication and the first thing they asked was “Oh well but how does your boyfriend feel about this? How is he coping?”
Marnie: That’s so personal as well, it’s so rude.
Crystal: Yeah, absolutely. So to just, those experiences scar you and it really builds up to be such a large trauma that you’ve faced and it just makes receiving treatment that much harder.
Marnie: It just gets you down and it just makes you so worried about going to see doctors. So if anyone has got any questions regarding anything that we’ve discussed, then we’ve made it a lot easier for you to contact us by messaging Crystal directly with any questions and she will sort it out with you there and then.
Crystal: At Live UTI Free we’re in contact with a lot of experts, so if you contact me with your questions I’ll pass them on. We then pass those along on to the subject matter experts and then they will select various questions and we will submit responses for you all to see.
Marnie: So I hope that all of you have found this video really helpful and I hope that if any of you girls are suffering with the same UTI problems that me and Crystal have suffered with then head over to the website and donate, spread awareness, share, and just get information and any messages will be replied to.
Crystal: Yeah, absolutely. We’re really trying to compile the biggest database of UTI sufferers which will be really helpful for us to help push for more knowledge, more awareness.
Marnie: Testing as well.
Crystal: And hopefully more research around the subject. So I hope that you’ve found this video informative if this isn’t something you knew about, or that it’s provided you with some solidarity if this is something that you’ve suffered with and please know that you are not alone.
Marnie: You’re not alone. Sending so much love to you all.
For more information on chronic UTI research and treatment options, get in touch directly with the team at Live UTI Free.