LIVING WITH FOWLERS SYNDROME

[@MarieAnneMcleod]

Thank you for sharing and being so vulnerable, I didn't know this illness existed. I was watching another illness video and yours came up. It seems so debilitating and frustrating. ❤❤❤❤

[@ajasartistry7905]

Ty for sharing my daughter is going through this. I am glad you are a regular person sharing this information. She's a teenager and it very hard

[@Ni_kki__]

Elle first can I just say you are so brave to show us what you go through and second to thankyou becoz you are going to be helping someone else who is going through what you are too❤️

[@TheElleNextDoor]

Thank you so much Nikki, that really means a lot ❤

[@Ni_kki__]

@@TheElleNextDoor anytime girlie you are someone I look up to and are amazing! ❤

[@kellymarievickers1]

This breaks my heart, I've had similar experiences with doctors telling me I'm "young so it's probably nothing" and I constantly get "it's probably your weight" or "you're just anxious". I've spent years crying and feeling like I've wasted doctors time and feeling stupid so I totally totally get this. It's wrong and it's cruel and it happens to so many women in particular and I just find it horrifically sad that we are constantly brushed off and minimised and invalidated. Thank you for showing this it is so so important and it does help us to feel less alone x

[@sarahwhitesmith]

I had the neuromodulation fitted in 2005, which unfortunately didn't work for me after self catheterization for several years due to fowlers, I've now had to have my bladder removed and have a stoma, urostomy,in 2018. Glad it's not just the drs I've seen that don't know what fowlers syndrome is. Thank you for your video.

[@corikay]

You are beautiful, strong, courageous and selfless!!! I can’t thank you enough for sharing this intimate issue and journey!!! I pray that you are finally “heard” by your health care system and providers. Please know how grateful I am for this video and information. THANK YOU!❤❤❤

[@bluebird9952]

So over the last few years since my 3rd child ive noticed my bladder filling more quickly and me going more often ..over the last few month's ive developed what can only be described as urge inconvenience.....so I can relate to the always needimg to know where the loo is....planning do i.dont drink before a trip out.....nightmare....well done on sharing makes people feel less alone.xx

[@raiganbarnes2774]

Firstly Thankyou for creating a video so informative, real and raw. It is so hard to lay yourself bare for the sake of others but you did it so beautifully. Secondly I think you’re doing amazing and it breaks my heart that doctors have treated you badly and that your not being supported in your complaint, keep fighting but remember you must also be your own advocate and look after yourself in all situations. I wish you well and want to say what a wonderful advocate for Fowlers you are x❤x

[@kierasmith6869]

I have just been diagnosed with fowlers about a month ago. This is such an amazing video, I really do commend you, there needs to be so much more awareness for it! I have endo as well which has caused my fowlers😥 currently 4am as I’m watching this because I’m wide awake with my pain! I’m on the waiting list for SNS ♥️ sending you so much love ♥️

[@fannyrc1265]

Hello, can I talk to you? I have had a foley catheter for 2 weeks.

[@sophiehaslam5821]

You are such a strong woman. You should be so proud of yourself for the way your dealing with this. I genuinely hope that you get the care you deserve Elle.

[@Munstergal82]

I have chronic illness and I use a wheelchair. I've had a few doctors that have treated me like you and I never had the courage to report them .but I got the courage this year and was told pay €3000 euro for a report I can't afford it so they got away with turning my life upside down. Stay strong elle keep pushing and you will win 🥰🥰

[@annieseaden5554]

Elle, hate seeing you so upset. Please don't feel you have let anyone down. Simply by making this video you will have helped so many people. Not only with Fowlers Syndrome but with other hidden conditions. My son has a hidden, rare condition and got so fed up with doctors pretending they knew what we were going through. Keep being you, that in itself will help others xxx

[@meeganerose98]

So brave of you to open up and share normalising everything. You are absolutely amazing 💗

[@clarasido2044]

Thank you for sharing your life. I always wonder how you are doing when you are not uploading for a while. I think you are very brave and it really means a lot when you are explaining to us what Fowler's syndrome is, at such a young age.. It will surely help others as well. Thank you Elle, bon courage.

[@nicolerussell5971]

I came across your video today after having a cystoscopy today for suspected (very likely) Fowlers. I’m not in a great place mentally about any of this and scared that I won’t be able to work or do any of the things in the future because of this disease and adenomyosis which is squashing my bladder and causes horrendous pain all on it’s own. I have similar issues with another sphincter called sphincter of oddi dysfunction which involves the liver and pancreas and similar to your experiences it has been dismissed my whole life and i’ve been told it’s anxiety and substance misuse and sexually transmitted despite clear evidence that it couldn’t be anything other than a sphincter that won’t open. Watching this was helpful, particularly when you talked about how you adapt to this really awful new normal and still live your life. I think your point about accepting this won’t change is so important because i’ve always thought that one day I will be fine but 10 years later i’m having to accept that isn’t true and find a way to get used to catheters and pain and all the other rubbish things that come with it.

[@francescac9900]

This was so hard to watch, and I truly wish they could find a cure, and that healthcare professionals get better educated on Fowler’s syndrome. You really highlighted how it massively affects your day to day life, something that many of us wouldn’t even think about and take for granted. I hope I’m time those that treated you so poorly are held accountable, might be worth getting advice from the GMC see if a complaint can go through them. Or any other registered body the urologists are a part of. Thank you for sharing your journey Elle. You are so brave xxxx

[@suem7172]

I have UC and I constantly scout my surroundings for bathrooms and know where the "good" restrooms are in my world. I'm so sorry. Thanks for sharing. I had a little cry with you!

[@EscWithVicki]

Proud of you for trying to help others. It’s exhausting for you so thank you for helping with awareness x

[@lisafranks4602]

It’s Very brave of you to post this , I also have to do this daily as I have EDS which affects all my body cells and also was taught to self catheterise and told they’d discharge me from urology. I assume it it’s connected to my syndrome as I’ve seen nobody since 2021 so it’s happening everywhere as I live I’n Staffordshire , sending love xxx

[@Clexa2149]

I have Fowler’s syndrome too. I had a similar situation with a female urologist like you did i filed a complaint and they sided on the doctor side. I switched to a new urologist and got an spc.

[@kierasmith6869]

Where is the mirror from?! I need it! I also use the same catheters, they are my favourite, I do think they look nice but definitely not like a lipstick 🤣 do you have any recommendations on how to slightly mange the back pain or anything like any products etc?🥰♥️

[@surethavanrooyen953]

You probably won't see this, but here goes. About 10 years ago I woke up and could not pee. No matter how long I waited or what I tried. So I went to the emergency room. Went for a urodynamic study and my bladder just did not work. After trying self catheterization for a week I ended up with a just a bloody mess everything. I could just not do it myself. As an emergency my urologist put in a suprapubic catheter. After two weeks my bladder just started up again. My doc said to come back if it happens again.... I have struggled eversince. I drink 3L of water a day and only get the urge to urinate when my bladder is so full I pee myself. I have been trying to downplay this and ignore it because I do not the energy to fight this battle. I have RA, already had a joint replacement and struggling with joint pain and just other medical crap. I am seeing my urologist again in Feb. I have no energy for this fight. How do you stay positive? How is your partner with all this?

[@kazhastell1099]

First off I want to say thank you for sharing this with us ❤ I remember a video did when you first was having problems with this. I am so sorry you had to go through that with the doctors they should be supporting you. I am a lot older than you but I have a slightly different problem to that I call it shy bladder I can’t always go toilet we in public I find it very difficult but like you I always look out for toilets I have just got back from Bruges in Belgium and the amount of public toilets they have their is unbelievable compared to us here you’re lucky if you find a public toilet unless you’re in a restaurant and yes I wee a lot as well some days I feel it never empties and it’s a standing joke at work that I’m always on the toilet. I think there’s a lot of people out there that may be suffer one way or another and thank you again for bringing it to us all you’re such a brave inspirational young lady ❤

[@H3L3N44NN]

I’ve just cried with you on this video everything you said is how I feel. I’ve been diagnosed with Fowlers since 2013 and I’m still treated like crap by urologists. My SNS hasn’t worked for over 3 years and because of covid couldn’t have it replaced. I’m still waiting on my urology team to see me but have heard nothing. I feel like I’m forgotten about which is just 💔💔💔

[@alexleo82]

great video, I’ve never heard of it so it was so informative for me , hidden disabilities are not very understandable and respectable by people around xxx

[@msfitz312]

I am so sorry you are dealing with this! When I was pregnant, I ended up in the Emergency Room 3 times due to Urinary Retention. I was in agony and the pain was almost comparable to child birth. I was sent home with catheters in each time. I saw a Urologist and was advised it was most likely due to pressure from the baby combined with constipation (from pregnancy). I was also given Catheters to keep on hand if I needed them (luckily I never did). I've seen the Urologist since having my baby but thankfully, I haven't had anymore issues (*knock on wood*). However, they do want to keep an eye on everything and see me regularly. I understand where this Syndrome would be debilitating as that's how it was for me while I was waiting to be seen in the ER's and waiting for relief from the Catheters. I can't imagine having to live with it. I am praying for you and sending all the positive vibes your way

[@rookythunder7258]

refrain drinking a lot of fluids when ur going out and also spicy foods, coffee etc which are irritants to the bladder

[@lovecreative90]

Thank you for this video. I started with bladder problems back in 2016 (aged 26) and doctors told me I was too young for bladder issues. Was constantly on/off antibiotics for two years. Got diagnosed in 2018 with interstitial cystitis after keyhole surgery! In 2019 I was diagnosed with fibromyalgia. In January of this year (now aged 31) I gave birth to a beautiful baby boy! After an epidural, I couldn’t urinate 6 hours after labour so I was catheterised. I couldn’t wee after 24 or 48 hours, or one week after giving birth. Long story short, I had a fitted catheter for 5 weeks after birth and then Urogyney taught me how to self catheterise. I’ve been self catheterising for 8.5 months. The amount of times I SC has reduced but some days I wake up and can’t urinate again. In 2020, I was diagnosed with celiac disease (although unrelated to the bladder issues. Doctors told me it ‘wouldn’t be celiac because it’s not in my family’). A doctor on the maternity ward referred me to get tested for MS, so after an initial appointment I am just waiting for an MRI scan to rule anything out. I was so traumatised about being catheterised after birth that I couldn’t enjoy those precious moments at the hospital or remember bringing my little boy home. I slept on the sofa for 5 weeks because the catheter was so uncomfortable in bed. Also doctors believe the trauma didn’t bring my milk in properly so I couldn’t breastfeed in the end. Thank you again for making this video xxx

[@iqrazafar7941]

I am two weeks postpartum after my first baby and unable to void own my own. Cathederised since 2 weeks and I am losing hope.You said that you have been cathederised for 8.5 months its a long time I am already feeling mom guilt for being unable to take care of my boy as I had planned. I can't afford major surgeries or long term treatment plans and I don't want to be disable for this long I don't know what to do.I am on the where ppl celebrate and enjoy the arrival of their rainbow miracle baby and here I am bed ridden most of the day crying looking at my kid and thinking what God has written for both of us who will take care of us and will I ever be able to get rid of this catheder and void own my own.If life could give us only one more chance to live happily.prayers needed

[@lovecreative90]

@@iqrazafar7941 hi, I’m sorry to hear you are struggling. Two weeks postpartum is still very early for your bladder to have fully recovered from experience so I wouldn’t panic. I was catheterised for 6 weeks in total then I self catheterised for 20 months in total and now I haven’t used a catheter for 7 months! However I did have bladder issues for many years prior to having a baby. One piece of advice I can give you is to try and not panic, and I know that is easier said than done. But it truly only makes things worse on your stress/brain/bladder. Try to do relaxing things - baths, music in your headphones when trying to void, breathe, run the tap so you have water running sounds. This all helped with me. Not being able to void after a baby is SO much more common than spoken about - it can depend on the way you delivered too. Did you have an epidural or forceps? I hope you are okay x

[@vijayshukla109]

I want to know place of surgery and results after surgery, whether it improved your problem or not?

[@freya7084]

I’ve just been diagnosed with this today after years of thinking I had shy bladder and a ton of UTIs. Now I need to learn to self catheterise

[@TheElleNextDoor]

I’m so sorry to hear about your diagnosis. If you want to message me about self catheterising, please do xx

[@kansmansen8609]

I feel your pain. :( I deal with not being able to pee as a man, probably been at the ER 10 times getting cat'd. It's hell on earth.

[@becka4]

Thank you so much for sharing 💗

[@bellacarnegie5511]

YOU ARE THE REALEST FUCKING GIRL OUT THERE I LOVE YOU YOU SHOULD BE SO PROUD FOR SHARING THIS

[@jay-nn3sm]

Not horrific at all..very educational and my hat's off to u..

[@nicolestocking4020]

You are an amazing young woman. ❤

[@jadehoward8835]

You are truly inspirational

[@ammrro]

Unreal, I came across this video.... Im not getting the signal that I have to wee. I can use the restroom but my body isnt alerting me. The only way I know, specially at night, is because i get sharp, unbelievably painful jab like pains on my bladder. Only way. During the day I just try to sit on the toilet and wait

[@vijayshukla109]

When ur surgery is planned ( sacral nerve stimulation).

[@coleymelissa1571]

You should be soooo fucking proud of yourself 💫🤍

[@stuartsutton9350]

Stay strong beautiful

[@carlybenarbia9193]

❤️❤️❤️❤️❤️❤️

[@alyshapayne7390]

oh I just love you🥹you truly are so brave and so inspiring no one I appreciate more❤️❤️sending u my love always beautiful!!!

[@nicoletay9229]

Elle, thank you so much for sharing your experience!! It's such a shame to hear what an awful experience you've had with NHS doctors and the complaint!! Here's a link that you might find helpful, becusse obviously the response you got for that first doctor really is not acceptable! www.gov.uk/government/publications/the-nhs-constitution-for-england/how-do-i-give-feedback-or-make-a-complaint-about-an-nhs-service#if-youre-not-happy-with-the-response-to-a-complaint