Cystitis and the feeling of doom

[SkaSkaSka]

Got another bout of cystitis and I feel genuine, horrible doom. Doom that I will never feel well again and the antibiotics won't work and I'll get the sack for taking even more time off work and everyone will think I'm a massive baby with 0 pain threshold.

Please reassure me that I'm not the only one who can't cope with life when this happens? I've just laid in bed and cried for 2 days. Please send positive recovery stories (I know I will recover but my negative thought cycle is spiralling.)

Please please google Professor Malone Lee’s work and CUTI (chronic UTIs).

He changed my life from a life that revolved around uti and all that goes with it to very rarely having any problems with my bladder at all. After 6 years of hell he put me on a long course of antibiotics plus Hiprex which turns the urine into a hostile environment for infection. He sadly died in February but his son and other doctors he worked with still run his clinics. After having an infection that just got worse and worse while tests were coming back from the lab as normal, I saw him at his private clinic in London. It was the best money I’ve spent in my life. For anyone who is ruled by their bladder, has been diagnosed with interstitial cystitis or overactive bladder, I can’t recommend his clinic enough.

I sympathise OP. I have the same issue.

I was 3 when I had my first UTI. Mum took me to the GP who said I was too young to have a UTI and therefore attention seeking. It got worse and Mum took me to A&E who diagnosed the UTI.

I had them regularly after that and was under a consultant for some years. As I got older the became less frequent. Then I became sexually active and went through phases of them and had a kidney infection which almost got me admitted to hospital as I couldn't keep fluids down due to the vomiting. This happened on day 2 of a new job and almost got me fired. GP kept dismissing me when I asked about prevention 'well they might not be UTIs'.

Then I had Covid. First time having sex afterwards I got a kidney infection and had to go to urgent care for antibiotics. Since then I've had about 12 UTIs and almost as many courses of antibiotics. After 4 months of this GP started to hint I was just seeking antibiotics but did agree to refer me to urology. I went private as was referred in Dec and wouldn't be seen until July and DH and I want to TTC which has been delayed long enough due to this issue. Turns out my bladder doesn't empty properly as I have EDS.

I am now on hiprex and d mannose and have a rescue pack of antibiotics. Had sex yesterday for first time on these meds so hoping they work.

I tried d mannose tablets initially but couldn't swallow them. Am now taking the Holland and Barrett dissolvable tablets. Much easier. My urologist said a lot of women have success with them.

I hope it's something which will help you too. I would be pushing to see urology.

Also, see someone about your sense of doom. The infection may have spread to your kidneys. A kidney infection is hideous and if it has spread, you may need a stronger antibiotic.

I hope you feel better soon

My dr thinks I might have interstitial cystitis. There is a group on Facebook where I got loads of advice. Loads of people on there swear by marshmallow root and slippery elm supplements and pumpkin seed oil and aloe Vera, which are said to help heal the bladder and keep urinary tract healthy.
I think my problems are linked to a very tight pelvic floor, so I also do pelvic release stretches.

Can you get phenazopyridine/pyridium/azo over the counter in the UK? It's often prescribed concurrent with antibiotics here in the US and now you can buy it over the counter as well. It completely and almost immediately alleviates the discomfort and pain from a UTI until the antibiotics kick in two days later. Just a word of warning it turns your pee Dayglo Orange so don't freak out. And will stain!

Also Premarin (not sure what the UK version is) vaginal cream used every 2 to 3 days helps enormously with preventing UTIs. It's pretty standard treatment for peri and menopausal women.

These plus d mannose
Recommended them on here before and got a few PMs to say how well they had worked

If it turns out your UTIs are menopause-related (which is less likely as you’re only 41, and I’d be following the CUTI thread first) then it’s because your tissues are drying out, charmingly titled Vaginal Atrophy. Local oestrogen eg Ovestin is miraculous if this is the problem.

Same!

Another thing I'm doing is taking an antihistamine every day since some bladder issues are triggered by histamines apparently.
Basically I throw everything at it and hope for the best

www.sweetcures.co.uk

i had terrible cystitis in my 20s. Waterfall D Manose was a game changer

I might be wrong about this, but is it the case that baths can wash away germs from the area, more intensively than showers do? I like baths and soaking. Emptying bladder after sex and washing is advice which everybody knows, but I do wonder about the bathing.

Ovestin cream as a preventative and d-mannose fizzy tablets for me plus nitrofurantoin from the pharmacist.
Cranberry etc does absolutely nothing!

Prof Malone Lee helped so many women.
I was treated by another consultant who no longer works privately but similar methods.
I had 3 months of full dose Co Amoxiclav, followed by 3 months of low dose nitrofuratonin. plus Hiprex.
Now just on Hiprex and a have a repeat prescription for 3 days nitrofuratonin after sex.

This is difficult to get hold of in the UK but Amazon/other websites sometimes have it under the name of Azo.

I would absolutely second it as an enormous help - it doesn't prevent cystitis (unfortunately!) but it is a complete godsend when you know you've got it and you're waiting for antibiotics to kick in or the "flush it out" method to work. It really does take the pain and discomfort away.

I’m having success with this as well.

I had cystitis every three weeks for two years. Eventually got referred to bowel and bladder service at the hospital. They put me on three weeks of antibiotics, to eradicate any bugs, hiprex and a course of installations into my bladder. Touch wood, no utis since.

Cystitis is the work of the devil. Poor OP.

D:mannose didn’t work for me, but definitely worth a try.

OP I had to cut out caffeine (due to rapid heart racing) but a weird side effect, which I didn't realise was related at first was that my frequent UTI's got considerably less frequent.
I read a report in a newspaper one day that Doctors in Germany had done studies to see if consumption of alcohol and caffeine had any effect on UTI;s and they had found that cutting out caffeine and to a lesser extent alcohol (providing you rehydrated with water) made a difference. Apparently having the two together wasn't recommended either.
Anyway I did find sticking to de-caff made a difference. might be worth trying?

You have my full sympathy op, I have had bladder/ kidney infections since childhood ( had kidney reflux as a child )
I'm 49 now and like a lot of pp's I need to drink at least 2L of still water a day or I get cystitis. I've actually got the headache & pulling in my bladder feeling again today because I was too busy at work yesterday to drink my usual amount. I'm off for a drink of Bicarbonate of soda now and pushing fluids to hopefully head it off.
Hope your antibiotics kick in soon op 💐

Thanks again everyone I'm still laying in bed feeling like shit. I'm reading all the comments and will look up all the helpful info.

I'm on week 4 of my much wanted brand new job which isn't brilliant is it?

Oh and baths and booze - I don't do baths, always triggers cystitis. And I've massively cut down on booze, not had any wine for nearly 12 months. But I did have 4 pints of quite strong IPA on Sunday and think there's more than likely a link isn't there. Sigh. So going to have another dry month and see how I go.

UnMumsnetty hugs to my fellow sufferers!

My mum ended up in hospital with a kidney infection after a UTI, so any temperature please please do get checked out, also not being able to hold down fluids is a serious sign that needs medical attention.
I get them if I drink red wine, no other alcoholic drinks do it but red wine is a definite trigger.
Had forgotten about that in 2020, swiftly reminded when I had a UTI after sharing a bottle of red with my partner.
Massive sympathy OP, UTI's are the pits.

The d mannose has arrived, shall I drink a big bucket of it and see how I get on?!

I definitely would, lots of fluids is helpful regardless.
But on the other hand what do the directions on the packet say regarding usage?

Cystitis is horrific, I had recurring bouts for years. What helped me was taking cranberry tablets and for some reason I just stopped getting it after I had kids. So sorry 🌸

I think I have a pretty high pain threshold and to me cystitis is one of the worst illnesses ever! I really feel for you x

@GlasswareisOverated it's says a spoon full in a glass of water every 2 to 3 hours so I'll go with that.

@Cheesechips birthing my 10 pound 1 ounce baby was easier than this shit show.