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Cystitis not clearing up Very emotional and fed up.

(33 Posts)
JJoo Thu 22-Oct-20 10:49:09

Hi I'm new to this forum. Can anyone please please help? I have been suffering with cystitis on and off since I was 21 (Now 39). Antibiotics did help however (they even put me on a months course (that did not help), the doctor has now said that they can not give me more in case I become resistant to it. So I tried D manose, things over the counter and pharmacist nothing works. The diet thing did work (cut out all acidic food including tea/coffee alcohol) I do drink cranberry juice. However, since March this year, it has not cleared up. I wipe from front to back, pee after intercourse although we don't do it anymore and it's putting a strain on our relationship. I'm stinging all the time. Paracetamol and ibuprofen does help a little but it then comes back after 4hrs. I've had countless of urine tests all negative they even stretched my bladder and had a look. They couldn't see anything. I'm so miserable as I have no life and 'm so fed up now. The doctor says I'm doing everything right. I want to eat things and go out to restaurants basically have a life. Please if you've tried anything that helps I be most grateful to try anything even just cut out my urethra and I'll pee in a bag ( I don't mean a catheter bag). sad

PinkCakes Thu 22-Oct-20 22:59:50

I was treated by my GP for 15 years for an overactive bladder - various tablets (not antibiotics, they made no difference anyway)and about this time last year I'd finally had enough of it, I'd been weeing 30 times a day, had terrible bladder pain which affected my work, social life, sex life, everything.

Everywhere I went, I had to first think about where the toilet was. I was utterly miserable. I insisted I should be referred to a Urologist. I had the usual scans and tests, was told to stop all caffeine for 3 months. (I was very sceptical). The difference it made was amazing! I was told by the Urologist that my problem was NOT an overactive bladder, but a sensitivity to caffeine. All those years of suffering, over with!

I drink water, fruit teas, decaffeinated coffee. I've not had a problem since.

Franbern Fri 23-Oct-20 10:13:37

It is sometimes related to stress. In the middle of a difficult house move last year I started getting UTI's. Each time I was put on anti-biotics by Gp, then these were changed when they received back the result of urine sample. Within 36-48 hours of each course finishing I was ill again. In six weeks I was prescribed five different anti-biotics. Then I demanded a referral to urology dept at local hospital.
There a camera under local anaesthetic revealed a lot of blood in my bladder AND a small growth there. Within a month I was back in hospital for this to be removed under a general and sent for a biopsy. Fortunately, it was benign but I was told I would need regular checks as it could grow again. I had been put on daily low level ab's by urology and continued those for a further six months, also used a oestrogen pessary.
I do drink loads of fluid - treating it like a medicine,.
My six month check up never really happened, just a telephone call from the Consultant (April this yea), and I think I surprised him when I said that I was more in fear of this returning than I was of catching Covid.
So far I have been fine - this is a very debillitating and nasty infection and should never be treated lightly and if it is ongoing should be properly checked out.

overthehill Fri 23-Oct-20 20:07:50

I have had it on and off all my life (I blame my ex. he had an extremely large member).
I believe there are three things which can bring it on, so I try to follow these rules.
1) Get your partner to wash and thoroughly rinse before intercourse
2) when showering rinse that area thoroughly so no soap/ shower gel remains
3) Drink lots and lots of water. This is where I sometimes slip up but it's very important. Tea and coffee...especially coffee don't count. I limit myself to just one cup a day.
If I do end up with it I do this.
Immediately take 2 d manose tablets. Drink water then a glass of water with about a heaped teaspoon of bicarb. Then keep drinking water for all you're worth, having another glass of bicarb later on. Then with a bit of luck it will go....good luck

Oopsadaisy4 Fri 23-Oct-20 21:49:03

flora this was back in the 1990s, they just have a repeat prescription now if they need it, thankfully not too often.

All of the advice on here is valid if you are young and having UTIs, but I’m nearly 70 and I know how to wipe, how much to drink, and how to wash my undies! Believe me if it was that easy we would all be soooo relieved.
Pardon the pun

Franbern Sat 24-Oct-20 09:02:17

All fluids (with exception of alcohol) do count. Although should not have more than a couple of cup of coffee each day. Obviously, plain or slightly flavoured water is the best - but I love my tea and have a very large mug of this (400mml) with my breakfast and a further one at lunch time similar amount. Despite the myth about cranberry juice (even repeated by some medics), there is absolutely no controlled evidence of this helping any more than plain water.

For most people (not me, as I have an ostomy), fluid is also taken from food eaten. The important thing is NOT to get dehydrated and if, at any time, you feel at all thirsty, then that is dehydration.
Some people do find that certain foods, etc can effect this condition. But, it is an infection.....and whereas over the counter treatments may well assist in dealing with a very minor ones, any that are well settled in - need something a little more effective.

Candelle Sun 25-Oct-20 12:11:58

I am in your club, currently on antibiotic number eight since mid-August (although three were for other infections and one was stopped after a bad reaction).

I have had the suggestion that my problem could be interstitial cystitis and reading up on it I certainly tick all the boxes.

I know I used Dr Google but the articles I found appear to be by fairly eminent doctors in this field. I will post (hopefully!) a link to the article I first found which sums me up to a tee. One of the most interesting points for me is that if one has IC, urine samples always test negative, for there is no infection

I have felt quite stupid in the past, claiming cystitis pain, only to be told that my sample is negative (yet again).

I don't know if I have IC or not but believe that I could.

Read the information here and PM me if you should want to.

I hope that you feel better soon.


Alexa Mon 26-Oct-20 09:17:39

Another way to urinary tract hygiene is to always empty the bladder thoroughly i.e. dont leave any residual urine in it after you wee.

To aid complete emptying you can run a tap and listen to the sound of water, or run some warm water over your vulva while you sit on the toilet.