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Re-occurring Cystitis - Help!

(17 Posts)
RedPony1 Tue 12-Jun-18 11:03:20

For the 5th time in 3 months i am collecting antibiotics for cystitis, they only give a course of 3 days each time, i finished one course last Thursday and symptoms returned yesterday lunchtime. What am i doing wrong?!

Back history:
As a 5 year old i was hospitalised for 2 weeks with cystitis, as my bladder was on the verge of bursting. I had what felt like hundreds of tests after.
As a teenager, i suffered a few times, but in my 20's i suffered so much. It seemed to die off when i was 30, but this year (i'm 33) it's been horrific.

I drink a lot of water, i don't wear nylon undies or clothes close to my crotch area, i don't use bubble bath and i use Simple soap but try to keep it a minimum in the area. I always 'air dry' the area rather than towel dry too. There's probably more stuff i do but having a brain block right now. I also don't drink acidic drinks such as juices.

The over the counter stuff never touches it and the home remedies such as bicarb are useless too sad

Are there further tests i can ask for? I just seem to take in my sample, have it dipped & sent off, and get a 3 day course. Surely something is going wrong somewhere?! It's so uncomfortable, feeling like your tubes are swollen and on fire sad

Buckingfrolicks Tue 12-Jun-18 11:15:52

Awful awful thing. I'm so sorry.

Do you pee and wash immediately after sex? Helped me hugely.

You could try cantharis homeopathic remedy for immediate pain

Stress and diet were factors for me. No alcohol. No salt. Helps a bit.

Buckingfrolicks Tue 12-Jun-18 11:16:41

Yes there are tests. Eg dilation of urethra, check for bladder stones, are two.

SluttyButty Tue 12-Jun-18 11:17:41

I have to have seven day courses to get rid of mine. A three day course does sod all. I was also sent for an ultrasound scan on my bladder.

dontknowwasmadetoknow Tue 12-Jun-18 11:21:03

Not sure this is relevant but I has recurring cystitis when I was on the contraceptive pill, had numerous investigations but as soon as I stopped the pill the cystitis stopped as well

fruitcider Tue 12-Jun-18 11:24:23

When your urine is dipped and sent off, what is the result of the dip stick? What bacteria is causing the infection, and what antibiotics have you been prescribed? Have you been given a course of broad spectrum antibiotics yet eg co-amoxiclav? My feeling is that the treatment you are being prescribed is not clearing the bacteria so you haven't actually been cured yet.

BevBrook Tue 12-Jun-18 11:24:47

I think 3 days probably isn't long enough - maybe it isn't getting rid of everything so it just comes back. I have similar problems, and I have been told now to come back and get more antibiotics straight away if the symptom are still there/ return quickly after finishing the course.

Do you always see the same doctor? I had the same thing, back and forwards, exacerbated by the fact that quite often an infection didn't show up at first so I had to go back a week later, and never saw the same doctor twice. In the end I saw one who picked up that it was an ongoing thing, and we talked about what might be causing it. Constipation? Sex? A prolapse? I ended up going for an ultrasound but they didn't pick anything up. For me I think it was an infection that was never quite got rid of but kept flaring up again.

user1471448556 Tue 12-Jun-18 11:25:11

Get onto Amazon and order D-Mannose supplements asap. It's a natural sugar that UTI causing bacteria love - they start eating the sugar rather than sticking to your bladder walls and then get flushed out with the sugar when you pee. I always have some in my cupboard and take a tablet if I get any sign of a twinge. When you have a full blown UTI you need to take more tablets and more regularly, but for me it has really worked.

DownUdderer Tue 12-Jun-18 11:25:36

I’ve just read an interesting news article about cystitis and how they’re discovering lots of bacteria that aids bladder function that hadn’t been realized before. It would seem that there’s a delicate balance. I don’t know how you can get a rebalance of good bacteria, maybe there are further articles that can be googled.

RedPony1 Tue 12-Jun-18 11:38:26

Wow thank you for the replies everyone!
I'll try to reply to everything....

Do you pee and wash immediately after sex? Helped me hugely.
You could try cantharis homeopathic remedy for immediate pain
Stress and diet were factors for me. No alcohol. No salt. Helps a bit.
I've not had intercourse this year, and don't drink alcohol - will look at my salt intake though!

Yes there are tests. Eg dilation of urethra, check for bladder stones, are two Thank you - will ask next time i speak to my Dr

I have to have seven day courses to get rid of mine. A three day course does sod all. I was also sent for an ultrasound scan on my bladder. I'm not sure why i keep getting 3 day courses, i should have asked when they called me earlier - will ask

Not sure this is relevant but I has recurring cystitis when I was on the contraceptive pill, had numerous investigations but as soon as I stopped the pill the cystitis stopped as well I did think about this, but have been on my pill for 8 years, with only a short break and i did get an infection whilst not on them too. I was hoping it was something simple like that sad

When your urine is dipped and sent off, what is the result of the dip stick? What bacteria is causing the infection, and what antibiotics have you been prescribed? Have you been given a course of broad spectrum antibiotics yet eg co-amoxiclav? My feeling is that the treatment you are being prescribed is not clearing the bacteria so you haven't actually been cured yet

I think 3 days probably isn't long enough - maybe it isn't getting rid of everything so it just comes back. I have similar problems, and I have been told now to come back and get more antibiotics straight away if the symptom are still there/ return quickly after finishing the course.

Do you always see the same doctor? I had the same thing, back and forwards, exacerbated by the fact that quite often an infection didn't show up at first so I had to go back a week later, and never saw the same doctor twice. In the end I saw one who picked up that it was an ongoing thing, and we talked about what might be causing it. Constipation? Sex? A prolapse? I ended up going for an ultrasound but they didn't pick anything up. For me I think it was an infection that was never quite got rid of but kept flaring up again.

This is my feeling too. It's not re-occurring, it's just not being fully cleared? They prescribe Macrobid each time, they haven't yet this year changed what they give me and i've seen 2 different Drs sad Also, they have never mentioned what comes back from testing - will push for that info, thank you both.

Get onto Amazon and order D-Mannose supplements asap. It's a natural sugar that UTI causing bacteria love - they start eating the sugar rather than sticking to your bladder walls and then get flushed out with the sugar when you pee. I always have some in my cupboard and take a tablet if I get any sign of a twinge. When you have a full blown UTI you need to take more tablets and more regularly, but for me it has really worked. Just off to Amazon now! Thanks

I’ve just read an interesting news article about cystitis and how they’re discovering lots of bacteria that aids bladder function that hadn’t been realized before. It would seem that there’s a delicate balance. I don’t know how you can get a rebalance of good bacteria, maybe there are further articles that can be googled. I think i read that too, might be worth me looking into it, but you kinda just trust your Drs to know this stuff, don't you? Annoying sad

Chrisinthemorning Wed 13-Jun-18 21:07:12

Please have a read of this website
www.chronicutiinfo.com

Chrisinthemorning Wed 13-Jun-18 21:11:16

You need to get good treatment or you’ll end up with a chronic infection. 7-10 day course, if you’ve had nitrofuratonin (macrobid) they need to try a different one.
Ask for a referral to urology and try to find a good urologist as a lot of them aren’t great at women and cystitis.

Sortofcool Thu 14-Jun-18 14:01:26

I second asking for a referral. Also agree 3 days isn’t enough in your case. Nitrofurentoin is becoming less effective due to resistance issues.

I had lots of infections as a kid. Then again when I was in my 30s. It was only when I had a rigid cystoscopy that something called cystitis cystica was diagnosed. It is mainly caused by inadequate or incorrect treatment of cystitis. A urologist can take a look around and see if ther is any obvious reason for your recurring infection (could be higher up in ureter or kidney as slow emptying/reflux/narrowing or obstruction of pelvic utero junction can make you prone to cystitis. It could be that a low dose (one per night) of antibiotics for 6 months or so might help stop infection coming back. In my case the infection is in the lining of the bladder where all the cysts are and often the lab results come back clear even though there’s infection that responds to antibiotics.
The best antibiotic I’ve ever had for uti’s are something called pivmecillinam (it’s a type of penicillin so maybe not ok if your aren’t ok with that). I find th side effects much more tolerable than others and it always gets rid of the infection. I take it for 7 days. Also trimethoprim is worth tryIng, Definitely ask for a referral though as it’s important to find any cause for your uti’s and prevent a chronic condition from getting established.

swissie Thu 14-Jun-18 14:16:59

I second the D Mannose recommendation. I was getting a bout of cystitis about once a month a year ago - I think due to peri menopausal hormone changes. I've been taking 1gram of DMannose for the last year and not one case!

chipsandcurrysaucemonster Thu 14-Jun-18 14:19:06

I can also highly recommend D-mannose. I'm in the UK and purchased from sweetcures, it comes in powder and tablet form and I found the powder form more powerful. It really really changed my experience as I was constantly getting UTI's. The tablets are handy on the go though!

RedPony1 Thu 14-Jun-18 15:43:08

Thank you so much everyone for the information - lots to look up and speak to my Dr about. It is nitrofuratonin (macrobid) that they have prescribed for the 5th time!

Sortofcool Thu 14-Jun-18 17:56:18

When you see your GP I would ask what the lab findings are coming back with. Also if Nitrofurentoin isn’t helping which other antibiotic is appropriate for the infection the lab result picked up. If no infection is picked up then I’d definitely want a referral to try find out why you are getting so many. An ultrasound of the kidneys, ureters and bladder for starters might give a clue and if not then a cystoscopy.

D-mannose is worth tryIng. It didn’t help me at all but lots of people swear by it.

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