Interstitial Cystitis/PBS - Update - Elmiron, Hydra Distension, Bladder Training
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- čas přidán 27. 08. 2024
- An update on what's going on with my bladder condition, now diagnosed as Interstitial Cystitis or Painful Bladder Syndrome.
What equipment do I use?
Canon DSLR - amzn.to/2ySYNR5
Ring Light - amzn.to/2vzwr0j
Tabletop studio lights - amzn.to/2vzcM0C
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Elmiron also causes eye issues...retina....vison problems with long term use
A video on the spray would be great if that suits you! Happy St Stephan’s Day xx
Thanks for this video. I have been diagnosed with painful bladder syndrome by one specialist and IC by another. My issue is pain and I cannot tolerate a full bladder. I am on amitryptiline which has really helped, as did going (back) on the pill. Most of the time it's manageable. I am now trying pumpkin seed oil as that is supposed to have similar levels of benefits of Elmiron. I also find that if I don't drink a lot of fluids it's worse, because my urine gets to be very acidic and irritates the bladder lining. When I have a flare up I drink lots of water, cut out acidic foods for a few days and use heat pads. I was the same as you, getting up between 7 and 12 times a night to relieve the pain but the pill really helped that, and then the amitryptiline helped even more. It can be debilitating and embarrassing, but it's also much more common than is realised. Good luck! xx
We sound so similar! My understanding is that PBS is the new name for IC so they are the same thing :0) Like you I can't tolerate a full bladder and found out yesterday that Elmiron isn't available in UK at the moment. I didn't know about pumpkin seed oil - I will check it out, thanks so much. I'm on Amitritptyline too and couldn't live without it - I didn't leave the house before taking that, its amazing and is also why I sleep at night now lol. Merry Christmas! x
Did you experience burning pain more so in urethra then just bladder ever ?
I have prolapse womb and a fibroid which is big so some days i have pressure on my bladder and I'm at loo every hour. Been told to try to not go as much as its overactive bladder but i can't as i leak. Love your hair and hair band so pretty. Hope you have lovey Christmas 🥂
Wow, I’m hoping to get to a point where I go every hour lol - I’m every 15 mins - fibroids are awful - my sister had one but had it operated on successfully x
I like that thanks for information
That bladder drug sounds dangerous. Glad the HRT is helping you. It is a game changer for me in regards to sleeping through the night and getting rid of severe heat waves.
Well news flash lady. EL MIRON stands for the LOOKER In Spanish. A Dark Looking Humor for the side effects it causes the 👀
Elmiron te dejara ciego “ that’s basically what it means. I been prescribe this,but I have such bad bladder infection called ESBL trying month of antibiotics non work, now I have a pick line straight to the Iv. This infection is a painful shit. I am in a wheelchair for 20 year this is the first time experience this worst infection.
The I got it at the hospital after some treatment. Anyone have some experience with this type infection ESBL ? Please let me know !
Hi Karen, hope you are well, Botox for your over active bladder is done once a year and is done under a local, not a general anesthetic and is not painful at all. Please take care and stay safe. Have a merry Christmas and a Happy and Healthy 2021.
It depends on the health board & consultant here - some like to do GA! Botox will only be an option if I have the other operation 😫
I was just prescribed elm iron and terrified to take it but dr said it's the only medication I can take for ic. But online it says there's other option. I'm finding a new dr
taking elmiron 25 years , now it is hard to see,. blurred vision and hard to see in dim light
See, that's exactly why I decided to never take it. I found a different Urologist and he started doing bladder installations and said that Elmiron is a very dangerous drug.
I’m wondering if you are at the GW hospital, I’m having a lot of the same issues
Did the bladder installations not help? Are you still doimg them?
czcams.com/video/eWVC1Y6cEqA/video.htmlsi=2uxsMOKPhzndCx3p
They didn't help sadly. I've done a couple of videos on my bladder now and what I used that helped. x
@@TheBeautyMaverick Thank you for replying. Is the latest bladder video the one from 3 years ago? I only saw 2 & didn't find them in your playlist. I'm very curious to your suggestions, so would like to make sure I didn't miss any of them😊
Dr Leah has a chair you sit on regarding problems in that region. I think it's over a period of time. Private and costs but I'm sure someone would have chair in clinic in Scotland. Dr Leah won one of the Alan Sugar programmes 'the apprentice' and has a clinic in London and you can read about chair on her website. I think you will find it interesting,if nothing else.
V interesting but it’s for incontinence and to tighten pelvic floor - thankfully I don’t have issues with that 😅
@@LifeasaZebra oh...never mind - I had a feeling it might not be the right thing.
@@elainebines6803 always worth mentioning though & I really appreciate that 🙏 I’m interested in all things medical anyway lol especially gadgets!
I am going through all this now .... Went under general antithetic , got blood blisters in my bladder .... Cutting out all acid .coffee tea , chocolate etc .... Taking aloe Vera and also I've heard antihistamines help to .... I don't want to go under antithetic again , took a week for me to feel human again .... Let me know if you find anything natural we can take to help or diet stuff
So sorry you are going through this! I am currently taking Pumpkin seed oil as research shows its as good as a bladder medication - try it - I'll be doing a video soon but I do think its helping! x
I haven’t read all of the comments here, but I’ve just been prescribed Elmiron as well & have been doing research…so much “controversial” info. surrounding this medication, but everything that I’ve read so far has said that the hair loss (alopecia) is not permanent & hair grows back after the medication is discontinued. I definitely could use a pain relieving spray 🙋🏻♀️. One more thing…I’ve noticed now that when I get really stressed out I experience terrible IC flares; it hasn’t always been this way, but as time goes by this issue is definitely more apparent.
Hi Heidi, sorry to hear you are suffering with IC :0( I noticed the stress connection also - the reason for it is when you are stressed you release Cortisol and this is an irritant to bladder nerves! Hope the spray helps. x
@@TheBeautyMaverick Interesting! It makes sense though. Thanks for the info. 🤍
This was very very useful! I'm currently undergoing treatment for painful bladder. What pain relief would you recommend?
Also would love to know what spray you use xx
Thank you ❤️
I'm so sorry you are going through this too :0( Here is the video I did on the spray - czcams.com/video/Pmn905HGe1o/video.html
And here I talk about how I deal with chronic pain - czcams.com/video/2ryg-Uqi_gs/video.html - there are a few other videos relating to my bladder pain - I don't find the normal painkillers such as Paracetamol and Ibuprofen ever helped. I'm actual going to do a video soon on my top 5 solutions and Pumpkin seed oil is on that list, as is my spray! x
What is the spray you talk about and what does it do.
It is just water with a few drops of essential oil in - lavender or peppermint. It numbs the area.
Hey what is the spray you make? Does it work for men
Small spray bottle, water, few drops of lavender and peppermint, shake, spray. Not sure if it works for a man, no way of me knowing lol.
Could you get one of those portable things you can pee in?Not a she Wee but the big one like they use in hospitals.Still takes some practice but takes anxiety out of journies as no facilities nowadays.Thinking maybe menopause related as get up so much in night these days.No pain but other symptoms.I juggle with how much water I drink.Sip in evening and through night helps.Happy Christmas.
I’m the same with juggling liquids but if I don’t drink loads it can cause me pain. Menopause caused my night isssues for sure as the HRT has helped. Oh god no, where would I use such a thing lol (the portable device)? I’d be mortified to do it in front of Kev and sometimes my issues are when I’m in town or driving myself where people can see in the car. Thanks though! Xx
Merry Christmas to you too 😘
My daughter has had bladder problems since she was very young. She wet in her bed till she was 14. We saw several doctors and we tried different methods but she eventually grew out of it, she still has somewhat of an urgency issue though. This was interesting Karen thank you for sharing it. I hope you have a joyful holiday. Take care and be well🌞⛄🎄
Same here re problems since I was 4 or 5. Glad she’s mostly grown out of it - I did too - was fine between age of 18 and 33!
One of the tablets my Father was on was actually causing him UTI so he was getting max 1hours sleep at a time as had to use the bathroom since he decided with his GP ( hospital gave him this tablet not the GP) he’s feeling so much better and sleeping for 3plus hours at a time now so he’s more rested in himself! Tablets really can have such negative effects research like you said is soo important!
What symptoms did you have
I talk about all my symptoms in this video - czcams.com/video/ANkWgE-HoRI/video.html
What is HRT
Hormone replacement therapy
Hi Karen, have you tried any drugs for your bladder problems? Detrusitol(Tolterodine tartrate), hope this helps. Take care.
Yes, I’ve talked about them all in previous videos - ditroban, Vesicare, betmiga etc, tried them all but they are for overactive bladder which I don’t have so that’s probably why they didn’t work lol x
I.wouldn't risk the drug and lose your hair! Unless you are desperate for relief it would stop me. You have lovely hair.