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We want to hear from you: please tell us about your experience of the online community.

Please tell me there’s someone else here with Fowlers Syndrome

tink13

I just feel alone with it and really am hoping there’s someone else with it on here

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Alex_Alumni

Hello there @tink13 and welcome to the community, thank you for reaching out. To help anyone who does have Fowlers Syndrome share their thoughts, I've marked your post as unanswered, which will hopefully help.

It can be tough when we feel like we're the only one going through something, but the community is here to support you, and you're certainly not alone

Would you like to share anything about living with Fowler's Syndrome that you wish others understood more?

tink13

Alex_Scope said:

Hello there @tink13 and welcome to the community, thank you for reaching out. To help anyone who does have Fowlers Syndrome share their thoughts, I've marked your post as unanswered, which will hopefully help.

It can be tough when we feel like we're the only one going through something, but the community is here to support you, and you're certainly not alone

Would you like to share anything about living with Fowler's Syndrome that you wish others understood more?

Well living with fowlers syndrome for me has meant I’m in full urine retention which means I’m stuck using a catheter which is in me full time as I’m unable to self catheterise myself. It’s a massive struggle as I’m only young and there’s like hardly any information out there about it if that makes sense. Just feel like I’m alone and the only one dealing with this as finding other people isn’t easy.

Alex_Alumni

Thanks so much for explaining @tink13 I must say I'm not too familiar with Fowler's Syndrome myself, and I can understand that not being able to self catheterise must be incredibly frustrating. It's helpful to learn more about the condition.

Please know that you're not alone here on the community, even if there's no one with Fowler's Syndrome on right at the moment. Sometimes having the courage to reach out can help others share what they are going through too.

Can I ask if you're getting any support for your mental health at all? It might be worth considering if you find it's having a big impact on you day to day.

If we can help with that, or anything else, please do ask

tink13

Alex_Scope said:

Thanks so much for explaining @tink13 I must say I'm not too familiar with Fowler's Syndrome myself, and I can understand that not being able to self catheterise must be incredibly frustrating. It's helpful to learn more about the condition.

Please know that you're not alone here on the community, even if there's no one with Fowler's Syndrome on right at the moment. Sometimes having the courage to reach out can help others share what they are going through too.

Can I ask if you're getting any support for your mental health at all? It might be worth considering if you find it's having a big impact on you day to day.

If we can help with that, or anything else, please do ask

I’m under the mental health team, I also have alongside fowlers bipolar 2 which is a challenge sometimes. I also have treatment resistant depression and an anxiety disorder.

These things have a massive impact day to day, especially having chronic pain as well. I just feel alone as I’m 23, 24 on Thursday and it seems like there’s nobody like me around anywhere

Alex_Alumni

Oh a very happy birthday for tomorrow @tink13 I hope you have a lovely day, do you have any celebrations planned?

I'm glad to hear you've got support from the mental health team, and I can certainly appreciate how, as a young adult, our conditions can make us feel a little isolated and separate from non disabled people.

You may already know about this, but the bladder and bowl community are calling for share their stories, and feature a story from a woman living with Fowler's Syndrome and Interstitial Cystitis. It might be worth getting in touch to ask about the community itself