Chronic UTI / Interstitial Cystitis?

[Cocostardust]

I just want to get peoples views on this. I was told 4 years ago I had IC but then told by Harley Street clinic I had a chronic uti, after a year of treatment (antibiotics) I'm worse than ever... I know people still say thats early still and it can take many years but I'm losing faith.

Can anyone give me some hope? I don't know anymore if this is a uti or not... has anyone been at rock bottom with bladder pain and got their life back??

This condition has totally devastated my life and I'm virtually housebound now, my bladder just burns 24.7.

I've come to terms with there not being a cure anymore but I just need this to get say 30% better so I can function for my children.

I've done all the usualls... my diet is as bland as they come, don't drink, don't swim, don't even bath etc etc

TIA x

Gosh poor you, and I can fully sympathise as I have similar.
Did you get a cystocopy done to diagnose you ? I found that they dilated my bladder when I had one done once and it helped a bit with symptoms.
Now my symptoms are back after a few years peace from them, and worse than ever - so sorry I can’t be of more help but I just wanted you to know that you are not alone.
I take cranberry pills, optibac probiotic for women and d mannose - they are all supposed to help .
I also take a nighttime oestrogen cream.

I had pain like you describe, for years. I don't have it now. I had lots of antibiotics, tests, scans, all sorts. I was eventually referred to a Urologist at a local hospital, at my insistence.

I had the usual scans, tests, etc., and he asked me to measure what I drank and what I wee'd out, for a week. I had to use a separate measuring jug for output and input and record it all. It transpired that I'd been drinking 7 -8 pints of water per day (far too much) and was seeing 25-30 times daily (too much, the normal amount is 8 wees a day).

I was advised to cut down to 4pts a day, and to only ever have decaffeinated tea and coffee, or water. No fizzy stuff (I didn't anyway), no alcohol, fruit juices, cocoas, or fruit teas.

The difference was incredible! After a week or 2, I no longer had the pain, and was seeing far less often. I had to do all that for a month then see the Urologist again. Then, he advised me to carry on with that but to cut down to 2 pints of fluid per day.

That was a few years ago. I haven't had any UTIs, bladder pain or any problem. I drink 3 decaffeinated coffees a day, a couple of pints of water throughout the day, and nothing after about 9pm. I sleep from 10.30 to about 6 the next morning, usually without needing to wee. occasionally I might wee once.

I had a bladder stretch done under general anaesthetic. It worked for a bit but then my urologist started me on cystistat - it was a miracle. I had to learn how to self catheterize but once you know its OK, uncomfortable but worth it for the drug to work. You use the catheter to fill your bladder with the drug. Hold it for as long as possible then wee the drug out. Its changed my life. I still have flare ups but not as bad. I know how debilitating it can be. Hope you can get some relief soon.

Oh also I was told it's called painful bladder syndrome, but I have also heard it called IC so I think it's the same thing.

I thought very recent research indicated that IC was a long term infection that was avoiding testing. The bacteria bury into the bladder walls or something. I think the treatment was very long term anti biotics.

I had it years ago, had the works, bladder stretch, everything. Weirdly the thing that sorted it for me was reflexology. I don’t know how or why, but 4 years of misery gone in 6 weeks.

Burrow not bury

Tried everything over a 5 year period- all usual stuff, endless tests and treatments

Eventually, (god knows why it took so long other than predominately male urologists who talked at me and never actually asked me), I was prescribed dry low dose long term antibiotics. Been on them for 2 years. Not a squeak of infection or pain since. About 6 months ago GP suggested I should come off them. I asked her why, what were long term risks etc…she didn’t know ..so I’m still taking. Until a urologist tells me I shouldn’t take them any more I am going to keep taking-

the pain was intense, attacks coming on every 7-10 days, couldn’t leave the house as only relief was sitting on loo letting urine drip out ( sorry tmi) , I was literally disabled with it. I was bleeding a lot, and could feel the pain all the way into my bladde. The antibiotics were like a miracle.

As poster says above, the thinking is that non detectable bacteria buries into bladder wall- the low continued dose over months sorts it out. At least it did for me. Thank goodness

Sympathy and hugs to all of you out there still to find a cure and relief….god knows how we manage to live with this - it is absolute shite.

I also think in hindsight that maybe going onto HRT would have been worth trying, this is so often found in post menopausal women so I do wonder if HRT would have helped. Not sure what research has been done on that.

You heave my utmost sympathies OP. I feel like I’ve had cystitis forever, but mine is more ‘on and off’ than yours. I’m currently in about week 4 of a particularly infuriating bout and have folded and taken antibiotics tonight. I usually avoid them as I think the ABs make me feel almost as bad as the cystitis does.

Have you tried D Manosse? It is the only thing that (usually) works for me (not this time though)

I took elmiron for a while and that sorted me. Although there’s now some research to suggest that has lead to eye/vision damage in some women.

When I stopped taking elmiron I started taking Calcium Citrate which I found suggested in some deep search of forums when I was struggling. I found it really effective - which makes me wonder if it’s just irritation of my urethra rather than IC… I was diagnosed but I think I might have suffered with a mix.

I took antibiotics for a year once and was cured for 6 years, then it returned and antibiotics didn’t touch it.

If it's related to menopause I really recommend a powdered collagen supplement along with oestrogen cream.

Try using Uvaursi a herbal medicine obtainable from Helthe Food Shops.
It worked for me. Use it long term. I do sympathise.

I have IC and that constant feeling of a uti is the worst. I’ve worked out foods and drinks that trigger me like artificial sweeteners, tea, citrus and a whole load of other things.

I take amitriptyline which helps a bit. I take d mannose and probiotics. The thing that has helped me the most is aloe Vera tablets by desert harvest. They’re expensive but I can’t cope without them.
Much more potent than most supplements and made purely for IC sufferers. I use their multi vitamin too as it’s low acid unlike pretty much every other one out there. X

@CoffeethenCrochet thank you so much this has given me hope as I think instillations are my next plan. Did your urologist give you an option which install liquid you wanted or is that the standard? I'm in the UK I've heard they use Parsons Cocktail here too I'm not sure if that's the same. I'm so s cared of the idea of self catheterising, do you have to put the tube all the way in, is it quite easy? I know it's something I'll just have to do. I'm so pleased this has worked so well for you!

Thank you all, lots of things ordered now with your help here :)

Good luck OP. It’s absolute hell on earth. I hope you get some relief.

Thanks everyone for contributing to the discussion. My daughter has had chronic IC/UTI for a few years. No medicine has worked a cure though antibiotics and pain killers have provided some temporary relief, only for this very debilitating condition to return. The NHS consultant told her unhelpfully she'll just have to learn to live with it,, a terrible thing to say to a young woman in the midst of dreadful pain and despair. She has sought and found some help from a naturopath by following quite a strict diet including reducing foods high in oxalic acid. It also involves consuming organic raw milk and cheese with food which helps absorb oxalic acid both produced by the body and derived from food. It's still work in progress and we'd love to get feedback from others who have tried natural therapies. It was interesting to read how reflexology helped someone here.

Hi, did you recover fully? What was the diagnosis and the treatment? Suffering, struggling with the same for the last 6 months.
Thank you.

Our daughter has not recovered fully from the Intersticial Cystitis diagnosed but is getting better. The pain and discomfort is much reduced but still there. She is having acupuncture that is proving very helpful with an acupuncturist in Maidstone (The Berkshire Health Clinic) who has a lot of experience with IC who reckons 70% success rate with clients she will take on. She has relaxed from the stricy diet and has followed advice from the acupuncturist to ditch many of the supplements her previous naturopath had her on. I'd advise you to reduce oxalates and consume organic raw milk daily with food and eat some raw cheese which helps absorb oxalates that are in your food and that the body makes. The oxalic acid irritates the bladder lining. Also consume some organic kefir daily to help heal the gut. Of course aso avoid junk food/ artificial additives/alcohol/ too much sugar etc.

Hi, how are you now, did you get better, if so, what helped? Thank you.

Our daughter is continuing to get better and whilst it still persists, her quality of life is considerably improved and she hasn't finished her course of acupuncture