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Cystitis not clearing up Very emotional and fed up.

(32 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

MacCavity2 Thu 22-Oct-20 11:55:41

Oh you poor thing. I just couldn’t ignore your post. Having gone through this hell mine was caused by kidney stones which they assured me would make no difference if removed. I paid to go private, had stones removed. Cystitis gone. Hope you fine a cure.

Fennel Thu 22-Oct-20 12:02:11

Are you still menstruating regularly? Could be early menopause but if so Your doctor would have noted it.
I struggled with cystitis too for years, I had a sensitive urinary system since childhood.

Sparklefizz Thu 22-Oct-20 12:02:44

Hi JJoo I am so sorry to hear about your problems and know how painful cystitis can be.

Have you actually had a urine test to see which antibiotic is best for your specific bacteria? When I last had a problem, I was prescribed a routine antibiotic which did nothing, then a 2nd course of the same one, which also did nothing.

Eventually I saw a different GP who sent off a sample, and it turned out that the cystitis was being caused by E.Coli, and I needed a different antibiotic to specifically deal with E.Coli. I had been suffering for weeks before a doctor did a proper check. I know you have been suffering for much longer.

Now I keep D.Mannose tablets in the house and at the slightest twinge I take some.

Cranberry juice was always supposed to help but I believe that theory has since been disproven. It is also quite acidic which possibly doesn't help. You need to make your urine alkaline, so Bicarbonate of Soda mixed in water and drunk several times a day will help, and drink as much water as you can manage.

I hope you can get something sorted out. flowers for you.

MayBee70 Thu 22-Oct-20 12:09:37

I had several bouts of cystitis when I was suffering from undiagnosed (at the time) vaginal atrophy. It might be worth using something eg Replens for a while to see if that helps. It’s a shame the d Mannose hasn’t helped because it’s a life changer for many people. Could you try taking it on a regular basis, not just when you have a flare up?

MayBee70 Thu 22-Oct-20 12:11:57

I do sympathise: cystitis is awful.....

Farmor15 Thu 22-Oct-20 12:20:54

As a retired microbiologist, I would ask for a urine sample to be tested to find what bacteria is causing infection and then it can be targeted with a suitable antibiotic, as Sparklefizz suggests. You certainly shouldn't have to continue to suffer, so persist with doc.

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.

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

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.

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

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

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.

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.

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.

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.

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.

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

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

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 .

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.

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.

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

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.

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

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.