Help! Have I got interstital cystits?

[hellsbelles]

I'm driving myself crazy over this one. I have a constant urge to urinate...no pain but a feeling that I have to go all the time (and a sort of pressure).

This has been going on for 4 weeks now...dr has given me 4 types of antibiotics despite all urine tests coming back clear. He has also done an ultrasound to check my kidneys and ovaries...all fine. He couldn't check my bladder as it wasn't full enough.

He's said that if this dose of AB's doesn't work then he will do a bladder distention under general anaesthetic...which sounds horrific. Has anyone any experience of IC? I have no stabbing pains or problems with sleep which makes me hope it might just be the curable oversensitive bladder. This has just started from nothing and I'm really worried.

Hey Hells, I missed your comment this morning! Yes, bicarb is just baking soda - or you can use epsom salts if you find you can tolerate them, though baking soda's very safe, and makes the water more unctuous, which is lovely. You can also add a couple of drops of lavender or rose essential oil. Lovely!

How are you feeling today - still good? [crossed fingers]

I'm feeling better again today - bladder still a bit sore, but frequency right back down (been twice since getting up!), and I think the flare was definitely ovulation related - now have the telltale slight period pain feeling and tenderness. Phew! All ok when you have an explanation.

And so funny you saying that about the wet loo paper - I do that too! It's become total second nature now, and definitely helped I think.

It also definitely helps to be able to talk on here. I guess what this thread shows is that bladder issues, whatever you want to call them, are rife. So strange: I'd never given my bladder a moment's thought before last October!

Thanks - I shall look forward to my unctuous bath (love that word)

That's so funny that you do the loo paper thing too! We've got to meet up one day and compare notes - though anyone nearby will think we were certifiable.

I have had another good day. Did you ever have 3 in a row and then it came back? I'm hoping this is a good sign and once I've done a total blitz on whatever this is with Deborah's help I'll be back to normal completely?! I'm still being very good on the diet and have had 2 days of the dmannose.

I spoke by phone to my GP about getting a different referral. She was quite shocked by gyne was suggesting Cysto under GA so soon and is happy to write me the letter so I can see a urologist. That's such a relief!

I'm so glad to hear you are back on track. I do wonder if we used to have bladder niggles before even hearing about IC but wouldn't give them a second thought? I'm sure I remember feeling a bit 'stingy' round certain times of the month and just assumed it was normal...maybe it is and we are now hyper attuned to it!

Having said all that I think it's so helpful that everyone is posting on here. I wonder if the people that post on the IC forums are the extreme cases so it doesn't really you a realistic view of what IC is like for most people.

Hey Hells - I think at the beginning I had two good days where I thought I was ok again, but not three! Fingers CROSSED that this is the back of it! I think whatever happens you've done all the right things, I think, so it should be simple to correct, I'd've thought.

and great news on the referral! What a relief.

And I know what you mean about wondering whether I'm hyper-attuned - whenever I'm feeling better I think I've imagined the whole thing! it's a puzzle, isn't it?

I'm absolutely certain the people who post on IC forums are either the serious cases, or newbies who are terrified. My sister banned me from reading them! So much more productive to talk on hear ...

Thanks to all the posters in here, i have intermittent bladder problems, so its v useful to see ideas re dietary connection and bottled water etc

Hey TC, welcome! Though welcome's perhaps the wrong word - what's the Groucho Marx quote about not wanting to belong to any club that will have me as a member?!

Have also noticed I've used far too many exclamation marks on this thread. Ahem.

I always use too many exclamation marks.

I've taken a risk and had a couple of (homemade) biscuits today...what a wild life I lead! I know that Deborah's diet will be so strict that I want to have just a tiny treat before then. All this lark is good for the waistline though isn't it? I've lost weight through worrying and no booze (!)

TC - good to have you here (though sorry you've had bladder issues too). I'm sure between all of us we'll come up with a whole range of things that will get our bladder issues sorted!

Oh, my yes. I've lost a stone! The first half was unnecessary chocolate-padding - glad to see the back of it. The second I could actually have done with, and am drizzling much olive oil over everything to avoid losing more!! Am definitely treading the clothes fitting wonderfully/face of miss haversham line!

PS I applaud your biscuit eating! Ah. biscuits. I miss biscuits.

me too! I had actually just recently lost a lot of weight post DD and I was feeling pretty darn fine ...and now I look like a wrinkled old crone.

It's a bugger, isn't it?!

how're you feeling today? good so far here (DS's early start notwithstanding)

I'm a tiny bit more 'aware' of my bloody bladder today but still nothing like previous weeks. I wonder if it is at all possible that the last batch of antibiotics actually did work? No idea really (I know it's more likely the diet but dare not test that by risking booze...I don't want to spiral back to a bad day). Hopefully Deborah will provide words of wisdom.

She's going to loathe me...I'm writing up a dossier (!) of medication dates/issues blah blah...as I know otherwise I'll forget important things. She'll think I'm bonkers.

Great that you've had a good start (despite your lark!).

I've stayed away from the forums for days now (I just posted a quick update but then left straight away) and I think it's helping my state of mind tremendously. They were messing with my head! I'm actually thinking of emailing the IC network to suggest they have a more balanced range of 'patient stories' on their website. It seems bizzare to me that they seem to be in order of severity...so the first 10 or so you click on are bloody tragic (and also hugely out of date). I'm not sure why they would do it the way they have- it certainly wouldn't help anyone looking for hope.

Or perhaps I should just keep my nose out. I wonder if it's because for years these ladies were told 'it's all in your head' and now they are desperate to show beyond doubt that it's a chronic and horrific illness (which it is in some cases of course).

I think it's totally possible that they did - could be a deep-rooted infection and it's taken it that long to kill it off!. Lots of speculation that IC's actually caused by a bacterium that we just haven't identified yet (like helicobacter with stomach ulcers). I'm taking antibiotics on Deborah's regime, but they natural ones rather than chemical, so slower acting, on account of the issues they can cause you (inc bladder ones!).

And I think BRILLIANT to have a dossier. She takes a very thorough history, so that'll definitely help!

Interesting what you say about the forums. I think you're absolutely right - but annoyingly on both counts - it's horrid that the stories you see are so bleak (and they're supposed to be the success stories! AWFUL) - incredibly upsetting for newcomers. But on the other hand as you say it's important to demonstrate the severity - for the sake of research dollars, if nothing else.

I got totally freaked out about it all at first because of the stories, but it turned out I actually knew two people in real life who had it too (just hadn't realised at the time). One was the woman who sits next to me at work(!) who had it for about four years from the age of 17 (she didn't do much about it - it just resolved - she thinks maybe due to her sorting some family stuff out) and another friend of a friend, who had it for about a year, and attributes it clearing up to getting rid of a not-good boyfriend. Again, it took my marvellous sister to point out that everyone I'd met who had it was now fine, and that it's a spectrum, and inevitably it's the people who're still suffering who post!

Hope the awareness recedes as the day goes on. I'm a little sore today, but frequency's fine

yes - quite true about research dollars, I didn't take that into account. But you only get the big money if it's of interest to the pharmaceutical companies don't you? And I assume it isn't because most of what seems to work is natural remedies!

I am feeling a bit gutted that my bladder isn't as good as yesterday but timing is good as hopefully Deborah will be able to help. I'm so glad you think the dossier will be o.k...I was worried she'd think I was a loon.

And it's interesting to hear about the natural antibiotics...I didn't realise such a thing existed.

I'm so glad your frequency is good and fingers crossed you continue that way through the day.

Tons of pressure at the moment with the house sale/purchase which probably isn't helping matters! I can't wait for it all to be sorted.

Oh lord, such sympathy - it is GUTTING when you think, oh, this is fine, and then it reappears a bit. Had that on Tuesday, having thought I'd basically seen the back of it. The thing that I keep reminding myself is that it's taken a long time for this to build up in my body, for a lot of different reasons, so it will take a while for everything to settle back down. Easier said than believed, of course!

I'm still feeling ok today, though, which is a relief - only been to the loo twice since getting up. I can feel my bladder, but half think if I weren't listening so carefully I wouldn't be able to.

I reckon you'll definitely feel better once the house is sorted! Can't remember if I've said this, but I have a semi-serious, semi-superstitious belief that I'll feel better once DP and I have sorted out our various domestic arrangements. It's been a killer few years -desperate for everything to settle down into some semblance of stability.

Natural antibiotics: very useful, as much less detrimental to the intestinal flora that you really need. The strongest, I think, is oil of oregano. Deborah makes up her own combination, which she changes from month to month. A really good one though, in the meantime, is garlic! I now put it in EVERYTHING. Fortunately, I love it (and so does DP ).

Right! My dad and stepmum have taken DS into Newcastle to buy something for his birthday (we're up north while he gets over the pox) and I'm off to get my hair cut. Ridiculously, I'm slightly nervous about that as I always got to the same place in London - what if they do it wrong?!

hope the haircut goes well! Very brave.

I have been taking a garlic suppliment (it came up on one of my mad googling frenzies) and also love it in food too!

You didn't mention that about DP and your situation and I'm sure it'll make a difference - I do hope it's soon for you...it's so interesting that both the cases you've direct experience of have cleared up once the trouble was sorted!

The haircut was fine! Phew. Took AGES tho - got out and realised I'd been nearly two hours!

How's your day gone - still feeling ok? I've had a pretty good day, hurrah. Definitely interesting that the two cases I've come into contact with appear to be anxiety-related, or at least anxiety-affected. The one other I know of is my second cousin, but in her case the cause was very specific - she had an operation for endometriosis, and it arose as a result of that. She hasn't really tried diet stuff, and hers comes and goes.

That was lucky! Could have gone horribly wrong.

Not bad today but not as wonderful as yesterday. I'm certainly going to work on being less of a stresshead...I was even thinking that before the fear of all this hit me.

I'm looking into cognative behaviour therapy which I've heard good things about.

Oh, this is so strange - I was thinking about that too, and have actually booked some sessions via my GP! Our thought processes in all this have been remarkably similar Was talking with DP the other day about whether it's just that case that your 30s (ok, in his case, 40s) are just a very stressful time - young children, work, big decisions, money worries, aging parents. I seriously need to work on my anxiety - it's shot through the roof in the last few years. Although - interestingly - it can also be a symptom of yeast overgrowth, apparently. My irrational I-think-DP-is-dead-if-he-doesn't-text-every-half-hour anxiety has actually ebbed since I've been on this diet!

Can anybody list for me the natural antibiotics which you have mentioned.

I have some oil of oregano and can get some garlic tommorrow.

Has anybody ever taken Myrhh as it's supposed to be a urinary antiseptic?

I have laid off all tea and coffee and am only able to drink hot water and some nettle tea Been drinking like crazy and feeling better with no frequency.

I am taking caprylic acid to combat yeast overgrowth.

When I dipstick my urine, there is only ever a trace of protein in it with no other abnormalities, but I know I have an infection which keeps returning if I don't drink like a fish all the time

The uva ursi is great, but shouldn't be taken for long.

ilovemyhens...noddyholder mentioned dmannose which I have started taking. She said it works for her and her sister. I've also seen this particular brand of Aloe vera deserthavest mentioned on quite a few forums as being a great help. They do deliver to the UK but it is expensive.

I have an appointment t/m at the hale clinic so shall report back what I learn but I'm sure Love&Squalor will know much more about this. I'm not surprised you are not seeing abnormalities when you test...that's quite normal with interstital cystitis apparently...all cultures come back as normal...so sorry you are suffering though and I'm sure we'll find (between us all) something that helps.

L&S - ha ha - we are obviously on the same wavelength! I am definitely going to persue the CBT though as the levels of stress I put on myself worrying about stuff is ridiculous!

I've just started reading you don't have to live with cystitis - I'm sure you've mentiond that one. I was interested to see a link to spinal problems. I had an MRI a year ago that showed a bulging and narrowing disk. I've made the pain go by doing pilates but I do wonder if there is any signifcance with my bladder (as alluded to in the book). It's a very encouraging read though - it really does seem she things it's solvable (it's just a case of working out what your particular trigger is).

I'm already taking d-mannose I've just taken three oregano capsules and now I'm having italian burps! and I found some garlic caps I'd forgotten about, so I've taken three of those as well. I've got to lay off the uva ursi or I'll end up doing my liver in Shame, because because it's excellent.

I've given up tea which is really upsetting because I absolutely love it The herbal teas are okay, but make me feel nauseous after a few cups

Cystitis is a total nightmare and I'm really fed up with not being able to get rid of it and the GPs are absolutely shite at helping with anything. The last one just gave me a leaflet. I told her it was recurrent infection, but she just ignored me.

Good luck at the Hale clinic Let us know how you get on.

oh my - I've had terrible back trouble since I was about 18! Scoliosis, apparently. My acupuncturist says it's the most common secondary complaint for IC sufferers. She actually did a treatment on my back and I haven't had any problems since. I believe her to be a Miracle Woman.

I don't actually have You Don't Have to Live With Cystitis - but have ordered from Amazon . Going to have quite the library by the time this is over

@Ilovemyhens I'm at my parents' now so can't check my book, but I think colloidal silver is another ... Apparently oil of oregano is the best, though. But do take it slow in case you get a reaction? It is a total nightmare, isn't it? If you're sure it's a recurrent infection, have you considered asking your GP to try a low dose of antib's for a six-month period? THis does work for some people. Not good for me due to the yeast issues, but maybe worth thinking about?

I dunno, I don't fancy taking long term antibiotics. I'd do it if I thought it would get rid of it for good. I'd sooner that they tested it properly and identified the organism involved instead of just assuming it's e-coli. It doesn't smell like anything familiar and I'm very familiar with utis due to nursing the elderly

ILMH's apparently there is a special test they have to do for a particular type of infection...as it doesn't show up in normal UTI tests. Broth culture or something? Maybe that's what you need to do (L&S - bet you know the answer!)

L&S - there is lots in the book about IC - I've only just got it and read started it but it's interesting to read that she finds lots of different routes to it (back problems, overuse of AB's etc etc)...did you know Fallon from Dallas was a sufferer! The celebrity face of cystitis! I thought she always looked a little strained - now I know why.