Anyone else awake

Sallywally1 Thankyou. A friend told me about Professor Malone Lee some yrs ago. Yes he basically believed that many cases were down to an infection that somehow 'hidden' well underneath bladder lining and caused recurring pain and symptoms. I think there was disagreement by many in the treatment of antibiotics used over many months (not low-dose). I do sympathise Sallywally , there is still no cure and it's horrible.💐

Apologies for the mistakes in my first message blooming auto correct! I got a little sleep in the end and did half an hours swim this afternoon which may help tonight. A good source of information on this condition is from professor malone Lee, who developed a pioneering treatment, though not fully accepted by other professionals. He has now sadly died.

Aldom I have every sympathy with your poor friend and with Sallywally1
as I too have IC /Bladder Pain Syndrome. I hope you don't mind but if you find out the medication that has worked wonders for your friend I would be grateful to know it.( I'm already on HRT patches).
Thankyou.
Sallywally Hope you managed to get some sleep in the end! I have Amitriptyline ( prescribed by Urologist) and it definitely helps me get back to sleep. Take care.

Ps ..this doesn't happen to all women Some are fine with 3 days..but thousands of us aren't.

I should add that women are generally only given 3 days antibiotics for cystitis whereas dogs cats pigs horses and men etc are given at least 10 days.. 3 days is not enough to kill it in the first place and when it grows back it's treated as a new infection...so another 3 days....All that does is allow the infection to get stronger and it colonises and hides inside the bladder wall. The bladder gets more and more damaged . No tests show infection . Cystoscopy shows inflammation....and Interstitial cystitis is diagnosed...

Try looking up "embedded UTI/support group" on facebook.l am a member along with over 20.000 .
Interstitial cystitis is an umbrella term for an inflamed bladder and a great majority of us were wrongly diagnosed with it.l was told mine was lack of estrogen...which it wasn't. Many are told it is anxiety. I am in treatment now . l had to go private first but l have finally been referred to the only NHS clinic that deals with embedded infections in the whole of Britain . I was diagnosed with interstitial cystitis by a Urologist who offered me no treatment. Urine testing often shows nothing for various reasons but when l had a more indepth test done privately it showed up 2 infections.
There is lots of information and help on that website if you look under "files".I hope it's of some help to you ..it's well worth a look.
Also google chronic UTI....you will find plenty of information and several groups. They all explain that often interstitial cystitis is a wrong diagnosis.
I am doing this in a rush as l have to go out but l know what you are suffering.

This type of cystitis sounds really miserable so you have my sympathy.
I remember reading a newspaper article about it a while back and it appears it’s a poorly understood condition even among urologists.

Would it be possible to see if there is a Consultant urologist where you live who has a special interest in this?

Thanks for replying. Toothache is agonising, you have my sincere sympathies grannyactivist.

I usually do get up and make a cup of the low calorie chocolate drink. I don’t think I would be prescribed HRT as I have high blood pressure. Will try and nap later, though really ought to go swimming later. Not been since Tuesday!

I’ve been awake since 4am - had a ‘complex’ tooth extraction a week ago and am experiencing a lot of pain, every night I’m waking up in agony. Expecting a follow up phone call from the dentist today - I suspect I have a dry socket. 😫

We all have different sleep patterns and I think it's something we just have to resign ourselves to...lark or owl. If the rest of the world is asleep and you're the only one awake (or that's how it seems), don't force yourself to stay in bed. Get up and do something, just be careful not to disturb other people whose sleep pattern is different.

A friend of mine has interstitial cystitis. It caused great pain and constant need to pee. She was up around twelve times every night. Medics have tried everything to help, and for a long time nothing helped. However, recently she has been prescribed new medication and put on HRT. There is a huge improvement in the condition. It's taken months for HRT to kick in, but that too is working for her. She's 82.
I will find out the name of the medication and let you know Sally.

I’ve gotten into this bad habit of getup when I can’t sleep, making a cup of tea and reading for an hour, it used to be occasionally, now it’s every night, and I have to be up at 5.45.
I don’t remember a time when I wasn’t tired (except for the hours of the night)

Only just; which is unusual for me. Mostly I wake around 4:30 to 5. I am often awake for a little while during the night. Since the clocks changed my sleep has been better ????

I’ve been up since 4am Whiff and Sally - awakened by MrPG’s horrendous coughing for the fourth time this week!🤬

I generally get my full complement of seven uninterrupted hours of sleep so can’t complain but will have to siesta later or I wont last past 8pm!

As Churchill said, Keep Buggering On !

I wake every morning at 5am as well have to start taking my tablets then . But usually in bed by 9 can never stay awake until 10. I space my tablets out as I don't like taking them together.

I had insomnia from a teenager but when I moved here it stopped . Even though I have to visit the loo twice a night get straight back to sleep .

Sorry you have bladder problems . I hope you have a nap during the day as you need complete rest .