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With a bouncing baby boy and recent engagement to Casey Johnson, Marnie Simpson should be walking on air. But when new magazine call the Geordie Shore star for a chat, she tells new she’s been battling a crippling bout of her chronic bladder condition since giving birth to son Rox last October, resulting in months of agony.
“I was in the most horrendous pain with bladder spasms and burning,” she reveals.
The 28-year-old tells new she was initially wrongly diagnosed with interstitial cystitis (IC), a similarly little understood condition, but later discovered she was actually suffering with a chronic UTI – an infection embedded in the bladder wall which is resistant to antibiotics and very difficult to diagnose with current testing.
After a tough start to the year caring for a new baby while in terrible pain, Marnie tells new she can finally see a light at the end of the tunnel and is receiving expert care from a US specialist as well as helping to heal herself naturally.
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“I was never really one for all that stuff, but I’ve found that diet modification and lots of herbal supplements has helped me more than medication,” she reveals.
Now finally getting on top of her symptoms, she can start looking to the future with her family, including planning her wedding to former X Factor star Casey, 25, who proposed to her last month.
Here, Marnie tells new how she’s hoping to spread awareness of her condition, where she dreams of taking 10-month-old Rox on holiday and why she won’t be inviting the Geordie Shore cast to her wedding…
Hi Marnie! When were you first diagnosed with a chronic UTI?
I was diagnosed in 2016 and managed to get it under control with bladder medication by 2017. I was symptom-free for two and a half years, then when I gave birth to Rox, it all flared back up again.
What were you experiencing before you got diagnosed?
A lot of pain and burning deep inside my bladder. It resembled a normal UTI and doctors were giving me three-day courses of antibiotics, which isn’t enough. You need two weeks to even touch it. They give out longer courses for acne. Three days just causes resistance, where the bugs in the bladder become very intelligent. Infections are missed and it becomes a chronic problem like mine. I was in and out of hospital as they just couldn’t get to the bottom of it.
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Why was it so hard to diagnose?
The NHS testing isn’t advanced enough. IC is only diagnosed through exclusion, but you can’t exclude an infection with the current standard testing. So the majority of cases that are diagnosed with IC actually have an embedded infection, which is when the bacteria in the bladder becomes resistant to antibiotics and embeds in the bladder wall, causing a bio-film. This then can’t be hit by the immune system or antibiotics. It’s basically protected. And that takes a really long time to heal.
Were you suffering from it in your early Geordie Shore days?
No, I only did one series when I had it, but it wasn’t as bad then. It was more like minor symptoms that weren’t restricting me too much. But after I gave birth, it was a whole new story.
How bad was the pain?
I felt like I had glass inside my bladder. I couldn’t even move it was so bad. I had to be given sleep medication as I was up in the night weeing all the time. It lasted continuously for a good six months.
It sounds horrendous! How did you cope?
I have such a good support system. I’ve got Casey, I’ve got my mam, I’ve got my family. I’m with a doctor from the US now and she’s been really great, too.
How are your symptoms now?
I have good days and bad days, but it’s categorised by flares so when I flare I’m in a lot of pain, but they’re less frequent now. Before it was every day, whereas now I’ll have four good days, then one bad day, then another four good days and then two bad days. The bad days are a bit outnumbered now.
Can you feel it coming on when you do have a bad day?
No, which I think is why I suffer with anxiety. I could be having the best day and I could be in the middle of a sentence talking to someone and it would just start. It’s a Catch-22 because I find I’ve got anxiety because I’m worried it’s going to come on. But when it happens, it brings on anxiety. It’s a nightmare.
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Does it mean you can’t make any plans?
If I’ve got something planned, I’ll start stressing out. My doctor said that the receptors in your brain are connected to the nerves in your body, so it’s proven that stress is a trigger. So I’m always trying to stay calm. I’m trying to eliminate all the possible reasons why I’d flare and it’s hard because no one understands. Everyone just thinks it’s a normal UTI.
Has that affected friendships?
No, but I’ve become a bit more of a homely person. I don’t really drink any more, but I’m a mam now so I wouldn’t be going out as much as I did anyway. Me and Casey love being at home with Rox.
Does it stop you doing other things you enjoy?
The only thing I feel a bit anxious about is going on holiday. I honestly would be happy to never see a nightclub again. I’ve done enough of that to last a lifetime. It’s more the things I want to do with Rox. I want to take him to Disney World in Florida, but I’m scared. I’m just taking every day as it comes.
You posted that you couldn’t get in the water with Rox for his first swimming lesson – that must’ve been hard?
Yeah, that’s sad. I think going on holiday would be easier because I’d be able to get in the sea as it’s sterile. It’s mostly Jacuzzis, hot tubs and pools. They’re full of bacteria and because I’m at high risk of infection, I have to stay away from them.
No spa days then?
Casey and I did just go to a spa. I just got in the sauna and had a massage while he went in the pool.
Is it true you have to carry an adult potty around in case of emergencies?
I did in lockdown because obviously everything was shut. So lockdown was tricky. I have a disability card that tells people I’ve got a medical condition, so they have to let me use a toilet wherever it is.
How does it affect you mentally? Does it get you down?
The first six months were really bad because it was such a long flare. I genuinely didn’t think it was ever going to end, even though my doctors were saying it would. I’d never come across anyone who had experienced a flare that long. I think the most I’d heard of was three weeks. I was so confused, I didn’t know what was going on. I thought, “Is this something else?” It was horrible.
What advice were you given before having Rox?
They advised me to have a C-section and I knew deep down that was the best option. But because I was heavily influenced by judgmental people online, I was worried what people would think. It’s an invisible illness so people don’t understand it. I knew because of the comments I’d read people were assuming I was just choosing a C-section because I had the money – like I didn’t care about my baby. So I ended up having a natural birth hoping for the best. Everyone was saying it’s better for the baby to do it naturally, but ultimately it wasn’t best for my baby because Rox had a poorly mum for six or seven months.
Did you feel you didn’t want to have to justify yourself if you’d had a C-section?
The thing is when I was pregnant, I’d been symptom-free for almost two years. I had a great pregnancy and I just didn’t think it was a thing to bring up. I did reach out to a few girls who have the same condition as me who did it naturally and they said they flared for a few weeks and then it went back to normal. So I thought, “It’ll just be like that for me.”
Do you regret not having a C-section now?
I regret that I listened to people when I should have trusted my own instincts and done what I knew was best for me and Rox. I put other people’s opinions before our safety and it was foolish.
Did being so poorly affect your bonding with Rox?
No, more than anything it made me really upset that I wasn’t able to do what I wanted to do. He was born in October so I had loads of things planned for Christmas. I wanted to travel to Newcastle to see all my friends and introduce them to Rox and I couldn’t do any of that. That was really upsetting. But, if anything, Rox is my strength and what kept me going.
Does it put you off having any more children?
No, I think it’s probably just not going to happen as soon as I thought. I have to make sure I do it correctly to limit the risks. I’d have liked a two-year age gap, but now I’m thinking I might have a three or four-year age gap.
Would you go for a C-section next time?
It’s good that your pregnancy didn’t make it worse…
I was OK during the pregnancy. But speaking to my doctors, they said that’s quite rare in people with my condition. I was really lucky. That is a little bit of a worry if I have more children, but I’m still definitely going to do it. I’m not going to let it hold us back.
Are you on medication now?
I’m not on anything now. I’m taking a break from everything because I was so anaemic after the birth, my body was struggling to cope. So I’m trying to regain my strength. I’ve been healing myself a lot with diet, doing juice cleanses and taking herbal supplements.
So do you think there’s a light at the end of the tunnel?
Yeah, it just took me a really long time to recover from the birth. I was on medication all the way through my pregnancy and I lost two pints of blood during the birth. I was already anaemic when I was pregnant and I’m still postpartum anaemic now. They said it could take six to 12 months for your body to catch up.
Has Casey been a great support?
Yeah, he’s my best friend, my soul mate. Literally, I couldn’t do anything without him. He’s just my rock. And he’s an amazing dad.
Did it make you realise he’s The One?
I already knew that, but this has been the biggest test ever. He’s shown me that he loves me unconditionally. At one point when I was really upset I was like, “I just want my bladder removed. Will you still stay with us if I have it removed?” and he said, “Of course I will.”
Would you consider that?
My doctors have said it doesn’t always guarantee the symptoms go if you get it removed. So you’d be taking a massive risk because you could wake up still in pain. They say the pain just moves further up to the kidneys. I think the only thing worse than being in pain would be being in pain and having your bladder removed, so I don’t think I’d be willing to take the risk, especially as I’m having better days now.
Congrats on your engagement. How did Casey propose?
He took me to this beautiful little secret garden in Welwyn Garden City – I think it was someone’s house that he rented – filled with fairy lights. He used a montage of our whole relationship.
How romantic! Was it a complete surprise?
I had a feeling something was going to happen, but I didn’t realise it was going to happen like that. I mean, that was spectacular.
How did you feel?
We both cried! It was really special, I think because we’ve been through so much with all my health issues as well. It was so amazing.
Have you thought about the kind of wedding you’d like yet?
I want a very simple wedding abroad. Barefoot and beachy, somewhere like Greece.
What about bridesmaids?
I don’t think I’ll have any. It’s not fair to pick one, I’ve got too many close friends and family. I think I’ll have such a small wedding, it will genuinely only be about 15 people. Just very close family and friends. I’m talking like two friends there!
Have you always wanted a small wedding?
Yeah, I want it to be so intimate because it’s such a special night. I don’t want to waste it talking to people who are acquaintances.
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Are you worried about your condition ruining your day?
I think I’ve got it under control enough. Every day gets better. The birth definitely shook things up and it’s just taken me a really long time to get it under control.
Why do you feel it’s important to speak publicly about your condition?
Because I’ve been through such a journey with this condition, I really want to spread awareness. I want there to be better testing and research. It only really affects women and I don’t think it affects enough people for it to be really investigated and researched, but I’m definitely thinking in the future there will be a cure.
What’s your advice to other sufferers?
To not give up hope. To keep fighting and just keep going. This condition massively affects your mental health as well as physical health. It’s a horrible condition to live with. I know there are girls worse than me. I’ve seen it with my own eyes and, honestly, I get so upset when I think about it. I just want to help them.
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