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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

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.

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.


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.

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

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

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.

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.

Floradora9 Thu 22-Oct-20 21:49:57

Oopsadaisy4 are your daughters on long term antibiotics ? I have been on a low dose for years and it made such a difference now the Scottish Government say nobody should be on this permanently and even if you have bad outbreaks you only get the low dose for a short time . I had a good arguement with my GP about it and he says it is out of their hands. They sent out a letter saying try crnberry juise and lots of water . They also added a link to medical advice and that said neither of these things make any difference . They should have read it before they sent out the letters.

Sallywally1 Thu 22-Oct-20 18:19:23

A year or so ago I kept getting UTIs which then led on to acute kidney infections which were terrible. A urologist recommended that I start prophylaxis nitrofurantoin long term at a small dose. This has done the trick for me. Google professor malone lee who has done a lot of research on this topic.

You have my sympathies, I went through agonies with the infections, which did not show up in the urine tests

midgey Thu 22-Oct-20 18:07:21

Another thought to go with Tuppence’s suggestions is not to wash your hair in the shower.

PollyDolly Thu 22-Oct-20 18:03:56

How awful for you JJoo. There's already been lots of very good, supportive advice and the only thing I would add is to tell you to drink lots of water. I aim for 250ml on waking before my cuppa, 250ml after breakfast for medication, 250ml mid morning, 250 ml before lunch and dinner and before bed and small amounts in between those times, all in addition to tea.

I admit, this might not suit everyone but it works for me and I genuinely wish you well and hope you get sorted very soon. Stay safe

Tuppence15 Thu 22-Oct-20 17:52:04

Having suffered myself, I found giving up all shower gels and bubble bath and washing all my underwear separately without any fabric conditioner and an extra rinse has kept it bay for nearly 9 months now.

When it was bad at night I found anti histamines helped.

I to tried everything I could find and had numerous tests.

Jayt Thu 22-Oct-20 17:46:30

Very old fashioned remedy - a teaspoonful of bicarbonate of soda in half a pint of water and keep drinking to wash it through your system.

NotAGran55 Thu 22-Oct-20 17:41:40

Many years ago in my twenties I had repeated bouts of cystitis treated with antibiotics, but it always returned.

One Saturday morning out of the blue I received a telephone call from a GP in the practice who I had never seen . He said that he had been reviewing my notes and thought that simply repeating antibiotic prescriptions wasn’t the answer.
He referred me to the hospital for an x-ray with a dye to track back to my kidneys where an infection was found.

A different type of antibiotics cleared it once and for all .

I would ask for a referral if I were you .

Luckygirl Thu 22-Oct-20 17:39:38

You have all my sympathy - it is a miserable thing to have.

Alexa Thu 22-Oct-20 17:26:24

The only thing I can suggest is after you poo, you always wipe from front to back . If possible get a bidet instead of a lot of wiping.

Bobbysgirl19 Thu 22-Oct-20 16:59:56

If you are of an age where you are post menopause sometimes vaginal atrophy can be a precursor to UTIs.
In these instances oestrogen pessaries can sometimes help.

Dollygloss Thu 22-Oct-20 16:54:17

I also suffered with on going cystitis many years ago, and after a diagnostic procedure under sedation I was proscribed a targeted antibiotic. Problem solved thankfully.

Juliet27 Thu 22-Oct-20 16:28:34

The last time I had a UTI I asked whether I could have Trimethoprim but after a test I was told I needed a different antibiotic. It didn’t work so again I asked for the one that I know works for me...and sure enough it did. I read somewhere that taking Alkaseltzer at the start of an infection helps which confirms Sparklefizz’ comment about Bicarbonate of Soda and I find that Ibuprofen definitely calms the discomfort/pain.

Oopsadaisy4 Thu 22-Oct-20 16:10:48

I’m with the others, both of my DDs suffer with this and have both seen Consultants, had scans done , they were both put onto long term antibiotics and rarely now get a flare up.
I have also had it for the last 2 months and managed to persuade my GP to give me 2 weeks worth of antibiotics last week and , fingers crossed, it seems to Be clearing up. If it doesn’t then it’s likely to be Oestrogen related (lack of)
Don’t be fobbed off, push for a Consult.

Franbern Thu 22-Oct-20 15:59:39

You really must insist that your GP refers you to a Urologist. Do not continue with over the counter things, which are only meant to help with very, mild and occasionally. You really do need to have a proper investigation and get this sorted out

Davidhs Thu 22-Oct-20 12:45:00

Not really a subject for a man to comment on but my wife was plagued for years and many couples have this problem. In our case the doctor advised better hygiene, so we both had a bath before any intimacy. That mostly solve the problem, not exactly spontaneous but a big improvement

sodapop Thu 22-Oct-20 12:32:37

I agree with everyone else Jjoo this is badly impacting on your life and there must be something to help. I would ask for a second opinion/referral to a consultant. I expect its a bit difficult at the moment to get a referral but don't give up. Hope things improve for you soon.

Hithere Thu 22-Oct-20 12:24:40

Maybe a second medical opinion would help?

How miserable to live like this. There must be another solution

Izabella Thu 22-Oct-20 12:23:06

If you have had it for years it could be interstitial cystitis for which antibiotics are no use at all. Please see your GP and ask for a referral to a urologist.