Recurrent Cystitis (HELP!)

Never tried using Bi Carbonate of Soda in my bath but I will certainly give that a try! Just trying to come down to a solution to fixing this problem. It is ruining my life 😔

Have you got any tips on how to drink more? (Sounds silly I know) I just find it really hard to force myself I know people have spaced out the amount of water they drink but I can only seem to drink 1.5 just now.

Hi Emma. It is difficult to get into but sadly I find it necessary. I have got into the habit of taking a 1.5 litre bottle of water wherever I go. I keep a bottle on my desk at work and even when I go out at weekends I carry water. Have you tried fruit teas? They make a nice change. Orange Barley Water is good too. Try to avoid anything fizzy though. You will get used to it it's just re-educating yourself to do it. 

 

Hello Kerry. Yeah, i wish it was easy, i do try just need to try harder. I have been drinking Macb flavoured water but just noticed earlier they have citric acid in it and i read up that it can make cystitis worse so think i am just going to have to go to plain water. I have never actually tried fruit teas, may give them a try. Going to phone my doctors tomorrow morning and ask to be referred to a Gynaecologist just to get everything checked out so hopefully i get through to them quickly! But the cystitis i have got right now started on thursday and still hasn't passed and it is really painful. I can barely sleep because of it, may need antibiotics.

You really must speak to your doctor. Sounds like you will definitely need antibiotics. Just keep on about being referred that's what I did. Trouble is unless you suffer with this problem you just can't appreciate how badly it affects your life. I worry all the time that it's going to return. I was free of it for 9 weeks this year then didn't drink enough had a couple of glasses of wine and bang it's back.I'm seeing a Urologist tomorrow. Not looking forward to it as I have to have a camera put into my bladder and I'm having a scan probably the same as you had. Chances are they won't find anything. Rubbish day tomorrow new job at 8.30am then Urologist at 4pm!!

See the only ones that have actually worked on me is keflex and i doubt they will give me them again because i have had them prescribed 3 times now i think. I know the feeling. The doctors where i stay think they know what is best for you when it is the exact opposite and when you say you need to go to hospital they say you won't need to just bring in another sample. Must have handed in about 10. I'm guessing since you said you are worried it will return you are just going for a scope to make sure there is nothing else wrong so you have the all clear? That is all i want, is the all clear but the surgeon said he wouldn't recommend me getting the scope because the chances of finding anything is like finding a needle in a hay stack so i am thinking it must be something to do with my urethra. I still think there is thrush inside of my urethra and the doctors aren't seeing this, thus why i want to go to see the gynaecologist. Ahh...Sounds like you have got a lot going on tomorrow! I would hate that. Then again i will probably wake up and feel rubbish again so i am on the same boat, lol

I'm just worried that I will go through the process tomorrow, they will find nothing then it will cause another infection and I'll be back to square one. I'm more worried about the after effects than the actual procedure!! Coming to the conclusion I may have to live with this but it's so depressing. If you feel really bad you should call 111 and get advice you may be able to get an out of hours GP appt.

Yeah that was what i was worried about too if they did decide to give me a scope but if you are still drinking plenty you should be fine I worry about that as well. i never used to have this problem apart from if i stressed or had intercourse but that rarely even happened but with the partner i am with just now i have had them constantly. It is my biggest fear that this might not go away but then if you think about it anything small can be overcome so we just need to try and stay positive! I wish i was doing as good as you are doing with drinking enough water. Might help me but hopefully the gynaecologist can give me some answers! I gave up with them too. They haven't been much help for me tbh

Yes you're right have to be positive and talking like this helps as you realise you aren't alone. Stress does play a big part so we must try to stay calm which is easier said than done. Hope doc will help you

Definitely is easier said than done but surprisingly i haven't been stressing out that much recently. Hope you get on well with the urologist tomorrow and if you have any advice you could give me from your trip that would be great also, lol! and thank you, i hope so too

Thanks I'll definitely let you know what they say.

Hi, l had reoccurring cystitus for ages, sometimes bacteria showed up in samples, often didnt, l also had near persistent thrush, which you can get just about anywhere in the system, and  the urethra is affected a lot with i.c,  l.d had loads of canestan pessaries, cream, even orally as it can be systemic,, but the cystitus symptoms and thrush reoccurred, worse flare ups due to menustration and intercourse, l got usual advice about drinking lots of water, and admit l wasnt a big water drinker either, but tried,  l was also referred to gynacologist, had laprascope, and more, still it went on for years, gps hadnt a clue really. Eventually one gp did refer me to urologist who did xray and scan, didnt show up anything, but finally a scope and biopsy showed up intersticial cystitus, inflammation of the bladder where no bacteria is shown, but bladder wall shows the effects of inflammation, pin point hemmorages, and for women whove been left to it for many years there can be scar tissue  where inflammation was, leading to some shrinking of bladder causing increasing frequency and pain,  they dont know what causes it being  fairly rare condition, many gps were clueless but with scope by urologist its  easily diagnosed, symptoms simular to bacterial cystitus, but doesnt improve with anti bs, l cant understand a consultant advicing against a scope, that is wrong, its scopes than bring diagnoses for many conditions which dont show on xrays and scans, only way to diagnose ic, and other conditions l guess. It could be ic for any one with reocurrant cystitus over a long time, also could be other causes, a scope the only way to find out. They do have a few  different treatments and meds for i.c, along with advice  support, and it helps most a lot, reduced my symptoms by 90 percent, now able to lead a more active lifestyle,  better generally. There is more info on intersticial cystitus thread on here, and on c.o.b cystitus and overactive bladder site, worth having a look to see if you relate to it,  l wouldnt like either of you or anyone to put up with it for years as many women did in past due to gps not referring them. l guess one of you might find out tomorrow, the scope can leave you with a bit of discomfort in urethra, but no worse than flare up and will settle sooner, with diagnoses and successful treatment. Best wishes to you both.

Hi Lynne this has been really helpful. I've been dreading the cystoscopy but I feel better after reading this. Hopefully I may get some answers later today. I was worried about the after affects of the scope but by from what you say it may not be as bad as I thought . Many thanks for this info.

To be honest I think most of them are jobs worth tbh. Just in it for the money and not interested in helping people or because they see it as a minor thing the person suffering won't get the right attention they need from the GP. I was told that my local hospital wouldn't see because basically as the doctor was basically trying to get at is there is nothing wrong with me but clearly is, lol. I will definitely be phoning up and booking a scope now that you have said that! Do you get put to sleep through getting a scope done? I get para about that, lol. I just hope this gets sorted and fast! I have been in pain since Thursday with this now 😔Can't even sleep because of it

I had the cystoscopy today and the doctor found that the opening to my urethra has narrowed possibly due to scar tissue. I have now have to have a minor op under anaesthetic so they can take a better look. All other areas they looked at were okay. Dr thinks the narrowing maybe what's causing the problem as when I wee I am not completely emptying my bladder. Glad I went although not looking forward to the anaesthetic.  

Hope your not feeling too bad, l know it can leave you with some discomfort but at least your getting somewhere towards reasons,  l,d never thought of that re narrowing of urethra, allsorts of probs, made me think, although lve had intersticial cystitus many years, since diagnosis and treatment its been well settled. But over the last 1-2yrs its not felt just right, not as bad as before, but one problem is l think my bladder doesnt empty properly, as within a very short time feel l need to empty it, l use folded up tissues against urethra as it seems to help me empty it properly. Plus l know with ic you can get scar tissue, caused by inflammation, but hadnt thought of it going into urethra, but it does seem likely as its often as inflamed as the bladder, as it happens lve to see urologist at end of month, see what he,s to say, probably cystascope, l really dont look forward to it, but only way to find out, what are we like, and not being able to sleep is the pits, no escape, l can manage 5-6hrs. Good luck

At least you know what the problem is now and that they are taken action. I think i empty my bladder properly as i like to sit on the loo for a couple of minutes before i finish up, to be sure that i have emptied my bladder properly. Yeah at least you are getting somewhere now! I know that would paranoy me as i don't like the though of going under and anaesthetic. Guessing you didn't get put to sleep for the scope? 

I got antibiotics from the doctors today...Nitrofurantoin they are called. Take 4 a day. They seem to be working ok just now so fingers crossed they get rid of this cystitis that has come on out of nowhere. I sometimes look things up online to narrow done what is the problem. I just think that some of the thrush may have been pushed up or be trapped inside my Urethra but then again i could be completely wrong. Definitely going to go for a scope though as it seems to narrow done the possibilities! I feel like that after i get off the loo but i think that is just the cystitis making me feel like i need to go back on the loo because when i didn't get cystitis i never felt i needed to go back and forth to the loo constantly. I know, i hate it! I have got sore eyes and a sore head because of the lack of sleep the past 4 nights. It's horrible ! I hope you get on well at the urologist and if you have any advice you could give me when you come back i would love to hear about it ! Good Luck!

Hi emma, glad to hear your anti bs are helping, l was on trimethoprin last week for ic flare up, usual frequency soreness stinging heat, but also stabbing pains up left hand side, which l took to be ureter, anyway it did settle well after a few days, l also get lower mid back pain and use heat pads for that. Anyway l saw urologist monday, but just initial chat, he intends to do scan first, those type where they put gel on, think that to look at kidney,s, cystascope later, how long no idea, took an age to get to see him. Told him my bladder doesnt seem to empty properly and after lve been l use a wad of tissue and bear down on it to release more.

l also told him about the mbs and how many women are still waiting months or years suffering  before referral to urologist and scope, he nodded, we agreed on having scope it takes urologist l0min to usually diagnose most bladder probs,  l dont know if there,s a shortage of urologists or more people getting bladder probs.  l know what you mean about the feeling of thrush, l got thrush near constantly when ic severe and undiagnosed, and it does feel to go right up into urether, soreness and irritation, l dont think docs often treat it enough, knowing anti bs encourage its growth, they could give localised pessaries, or oral ones for systemic. . l think frequent thrush in your system is a symptom things arent right or healthy, it is a fungus thats an opportunist when somethings wrong, inflammation or other prob. the allergen season started so adds to probs, lve also got sore head and eyes, saw doc today she,s give me anti bs for chest, l think maybe it can be getting run down with one thing and makes you more vunerable to other things. Talk about the walking wounded, good job weve will power, and tomorrows another day, bet were having early night, sniff, snuffle.

Never heard of Nitro....... hope all,s improved for you.   

Yeah, they helped for a bit but i didn't finish the course which i should have done but i tend to forget this easily when i am concentrated on other things but replied to my post a couple of hours ago stating that i was going for another bladder scan but this time to make sure that i am emptying my bladder properly which i am 100% confident that i am as even when i don't have cystitis i still like to sit for a couple of minutes to make sure i don't need to sit back down again but i was told today by the receptionist of the nurse i am seeing that the doctor i previously seen at the hopsital has referred me to get a cystoscopy which i am having to get put under a general anesthetic for. I don't even like the thought of getting put to sleep, never have but i suppose if there is a chance this could all go away then i am more than willing to go for it. 

Yeah i tend to catch every illness going with this problem. I tend to feel more weak, tired and a can't be bothered attitude from it and it is horrible to feel that way as i am quite an outgoing person. I still think there could be a build up of thrush in my urethra but will just need to wait and see what the scope shows.

Nothing has improved so far but hopefully everything will be sorted by the end of June. Hope you manage to find the problem to your suffering too.