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.

The thing my very sensible dsis said wad that the only people on the forums are the people still suffering - if you're feeling better, you don't bother going back on to say so! So all the bad news stories are highly visible, while the good news stories aren't to be find. A book I've found v helpful is Catherine m simone's 'to wake in tears' about her overcoming IC. She was in a HORRIFIC state with it, but healed herself. Very reassuring!

Hells - I've taken aloe vera for IBS. It worked incredibly well. If there are some kind of links or similarities between IBS and IC, then it might be worth giving it a try.

I took it twice a day for about a year. After 3 weeks, my IBS symptoms had virtually disappeared. I now just take it when I feel the first signs, and it tends to avert them.

littlefish - thanks, I read the same and have ordered some from the US (apparently a specific type works best)...but it's not yet arrived.

Just wanted to say I have had IC for 4 years now, began mildly, got much much worse as I thought it was 'all in my head' so didn't go to the doctors enough/try diets etc. I was horrendously low at one point, and thought my bladder would never recover.

I am now nearly fully recovered having followed a very strict alkaline (and low gluten) diet for months. Lots of veg, lentils, salads, cucumber, garlic, avoid things which seem to trigger symptoms, and 20% of your diet can be anything you like, eg: meat, chocolate, bread...

I also took D Mannose, which I found great, not sure about the anti-bacterial quality of it, seems more likely to be an anti-inflamatory but it certainly worked for me. I don't need to take it now thank goodness as it is very expensive!

I've recently been working on my posture, in particular lengthening my hamstring muscles, which need to be long and strong for correct pelvic floor function. Apparently kegel exercises if done by a person with weak glutes can pull your tailbone forward and put pressure on your bladder, causing poor functioning, incorrect signals (needing to go all the time), irritation and inflammation.

Squats (when correctly done) are good for strengthening glutes, legs and deep pelvic floor muscles.

IC is not necessarily a life sentence, many people have recovered. I second the earlier poster who said you need to find your own cure.

Be kind to yourself, treat yourself as a friend & listen to your body.

littlemama - thanks for posting...it's encouraging to hear how you are managing with it. How did you get your diagnosis in the end?

I'm wrestling with the idea of not bothering with the whole 'bladder blown up like a balloon' thing! What did you do?

After going to the doctor in tears and unable to sit down or stand still, I was sent to see a consultant urologist.

I was diagnosed after a cystoscopy, camera in to look at the bladder (empty and then blown up like a balloon but with water!). For me this was to rule out any other conditions. They found no ulcers but I was diagnosed with IC anyway, most consultants no longer need to see hunner's ulcers to diagnose IC as you can have it without. I have had endless urine tests, the first few showed bacteria, but ever since just shown signs of inflammation & blood.

The cystoscopy wasn't nice, but I am glad I had it done to rule out anything else.

Talk to your doctor, perhaps you could try the diet etc. for a month and see how you get on?

Google alkaline diet for a list of foods. You can eat 20% food not on the list. I am now eating a more normal diet again, but with plenty of salads and using gluten free or spelt flour. I can even risk the odd bit of orange now which I couldn't touch a few months ago without suffering lots of pain after. I am guessing the surface of my bladder has begun to heal.

littlemama - thank you! That is my plan for now. I'm going to visit a lady that has been recommended to me by love&squalor. I'm also going to ask my dr if we can do less invasive tests to rule out everything else. I've read about a few so I've asked him (by email about them)

What is interesting to me is that there are so many comments about it not being fixable...but I keep hearing stories from those who have tried quite a radical diet (like you) that they can feel things healing...and surely that means it will be fixed eventually and forever!

I think the problem with the treatment of IC is the lack of joined-up treatments from across medical disciplines. Urologists are still prescribing the same old things which may help but aren't able to heal. Why no urology department has researched the alkaline diet and IC I don't understand as there is a lot of anecdotal evidence to suggest it is extremely beneficial.

It is about time there was some serious research into this condition.

There has been a study into the effects of citric acid and ascorbic acid (vitamin C) on the bladder, both shown to aggravate the detrusor muscle in the bladder. These acids are found in many breads, biscuits, processed foods etc. I avoid these acids as far as possible. Look at the ingredients, after a few weeks you will know which brands to stick to.

One last tip, think someone has mentioned this already: drink only bottled water with low potassium, Evian is best. Some find milk soothing for the bladder too.

Good luck!

littlemama - I suspect the real reason there hasn't been any scientific research into the relationship with diet is that there is no money in it. You can't patent a diet really can you?

I also think that from everything I've read IC is a bit of a 'catch all' which may incompass a lot of different things (all related to bladder of course)...hence no one thing works for everyone. It seems to be a term drs use when they are stumped by undeniable pain/discomfort that can't be explained by other causes...

I read with interest your comments about your posture. I have been doing a lot of pilates recently to build up strength after a long period of pregnancy bedrest. I wonder if I've focussed too much on the pelvic floor and back (which I had problems with) and neglected hamstrings etc...I shall certainly raise this at my next session.

blimey - it's all a puzzle isn't it?! But I guess it's all to the good to learn more about what makes your own body work at it's best and help it heal.

Thanks for the Evian tip - I shall make sure that's the one I get in future.

'encompass' !

Littlemama, hurrah! I'm SO happy for you that you've managed to tackle this. It's he'll on earth, isn't it? So upsetting to hear the 'incurable' diagnosis. Can I ask a couple of qs? I'm doing full on diet too - how long did it take before you felt you'd really cracked it? I'm feeling definitely better but struggling with the up and down nature of the thing - two good days then a bad day sort of thing. Also... Sorry for slight obsession ... But was sex a problem for you, and if so, when did you - ahem! - get back on it? DP and I are feeling bereft... !

Ah, hells! Just read your last post about pilates. You might want to consider also looking for someone who does myocardial release. Pelvic floor dysfunction caused by overtight pf muscles can also contribute as littlemama said - have a google. I'm looking into this myself as I've always had v tight pf muscles (despite a 10lb7 DS!). Lots of info about this on the ica network - worth looking if you think it applies to you (annoyingly it's far better understood in the us). Also v good on this subject is tim parks' book teach us to sit still about chronic pelvic pain and urinary dysfunction,which he cured through, essentially, meditation...

I have IC, it took a year to diagnose it at the doctors.

I take Regurin, a bladder relaxant and loosely follow the IC diet. Chocolate, tea, coffee (normal & decaff), citrus, tomatoes, cranberry juice, alcohol all give me terrible burning pain and urgency.

If you haven't cut out decaf drinks, try that too. Worked for me.

Myofascial release! Bloody iPhone.

I shall definitely investigate! Thanks.

Has anyone been tested for this ureaplasma it does seem like some cases of what seems like IC can actually be cured by a very specific type of antibiotic.

I haven't, but I know it's something deborah grant can test for - maybe raise it with her?

oh that's interesting. I shall discuss it with her.

I've just realised I ordered the wrong Angela Kilmartin book! It seems more about chronic cystitis rather than IC...but I've downloaded the more specific one to read later.

There is a lot of talk about hygiene in the first book...!

Love&Squalor, I did the IC diet for a while, didn't help much, then vaguely did the alkaline diet, helped a bit but up and down, then I got very strict with myself and really stuck to the alkaline diet and I felt better within days, but I did have to follow it very strictly to be symptom free.

When I was doing the strict diet I was eating piles and piles of lettuce, leafy veg, veg & lentil soups, soda bread and snacking on raisins and seeds, drinking just evian, eating very, very tiny amounts of meat, cheese, eggs, chocolate etc. I had to keep telling myself it wasn't forever, take it a day at a time, lol.

I couldn't cheat on the diet without symptoms returning until I began the posture exercises, after a few weeks of those, my bladder function began to return to normal. I've got to say, I'm still not fully recovered - I'm ok and functioning, but still eating alkaline-ish, and still getting the odd bit of burning, but NOTHING like before.

Google 'Katy Bowman pelvis' to find the Katy Says blog which contains the exercises I do.

Re: sex, it was a big problem when the IC was bad, if we could do it it always caused a flare. Nearly gave that up too! I found taking extra D Mannose before and after helped, loads of lube and relaxing before -back massage from dh (if he wasn't too tired) or Paradoxical Relaxation (as described in the book 'A Headache in the Pelvis'). Now the IC is under control, sex can still cause a burning feeling (friction, lol!) the next day, but it's worth it!

Tim Park's book is great - I'd love to try meditation. Incidentally, the classic position for meditation lengthens the spine and hamstrings...

Tim Park also did Paradoxical Relaxation which helps to lower the activity of the nervous system, so reducing spasms and nerve pain.

How is everyone? Hope you are having pain/frequency free days!

I just wanted to check - I've realised I've always gone more than normal...probably 10 times a day. I drink a lot of water so assumed that was it - but I keep reading that 4-5 times a day is normal - yikes!

I had 2 days where I thought...oh this is going (strong AB's maybe kicking in - or so I thought.) And then lunchtime today it was back. No apparent reason (other than worry?). I keep hoping it is just some momentary blip. Vain hope I guess.

I can't wait for next Friday and my appointment at the Hale Clinic- I just want to talk to someone other than my gyne who seems just desperate to put me under and do the cystoscopy which seems a little soon after just a month of symptoms.

Hey hells - am hear to talk if you need to! Heading to bed presently, but can pm you tomorrow? Or happy to send you my number if you want to chat on the phone. It's scary and horrid. If it helps, i can give you good news stories: I've had a much better week again, despite lack of sleep, sick child (flu followed by the pox!) and even some relationship upheaval - feel like I am starting to trust my body again. And another woman with IC whom I've been mailing who's been horribly ill with it thinks she's turning a corner and might soon be back at work. It can be dealt with - we just need to find out which route we need to take x

Ps prior to this I reckon I was going 4/5 times a day. When i was bad, it was prob 12/14. It's slowly decreased: am back to around 5/6 now, but drinking much more water - 2l minimum a day, plus IC tea. I do still have more sensation of needing to go than I did, but again that's faded. Still some discomfort, but less too...

Ps it's poss the abs did work, or did a bit. But it may be that they also caused inflammation - it's complex. Can I suggest taking some probiotics in advance of seeing Deborah? You'll def have stripped the good flora out of your gut which can cause probs. Seems the whole area's connected...

thanks so much love&squalor...so glad you have had a better time recently (despite very testing times!).

I have been taking a very good acidophilus supplement to try and balance out all the horrible antibiotics.

It's so weird that before I'd ever heard of this, the fact I went a lot (nothing like as much as when it was bad though)...never bothered me. Now all I panic is that is was a 'sign' I was predisposed.

I'm still wrestling so much with the the feeling I should get the proper cytopscopy just to stop this infernal questioning in my brain! But I guess that is something Deborah can guide me on.

Good work on the acidophilus!

I know it's easy to say and very hard to do, but don't overthink the frequency thing - it's all just averages, and people have to be on both ends of the bell curve. I always thought I had a cast ironbladder, and here I am!

It's a v individual thing I think, but I am glad I had the cystoscopy - it made it all feel less mysterious, and felt like at least I knew what I was dealing with. But as you're seeing Deborah on fri and you couldn't presumably have one before then, why not chat to her about it?

How's your sleep btw - are you getting up lots at night? X

Night isn't bad at all luckily. I do read in bed and end up getting up a lot to go when I'm doing that but once I'm asleep I don't usually have to get up.

Did you watch embaressing bodies by chance? They had a chap treated (for something totally different) with hyponotherapy. A lot of his symptoms were made worse by stress and just 5 treatments made him so much calmer and actually helped his symptoms.

Now I know this isn't a stress illness...but it certainly seems to be made worse by that doesn't it (l know I don't officially have it yet - I'm obsessed...sorry)...so I wondered if you'd ever tried that at all?