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.

ah hells, that's so interesting - me too! I find whenever I check my whole pelvic floor is clenched - can't be helping. But argh, I never thought about whether it'd work in the UK. What a doofus. I'll let you know! Was also thinking I might go and see a woman called Maria Elliot, who specialises in physio for this sort of thing ...

Hey Rambling - the link's quite a strong one, apparently, or certainly it can be - yeast overgrowth can mimic the symptoms of IC (or be one of the causes of IC, or however you want to put it). Basically, through AB use of the pill, or steroid or ibuprofen use, OR a sugary diet(!) you can upset the balance of flora in your gut, which causes the yeast that's always there to run riot, penetrate your gut wall and become systemic. Which - according to some tests I've had done - seems to be a problem for me. There are good questionnaires online that can help give you a sense of whether it's a problem for you - and constant exhaustion is one of the symptoms. I've been on the diet for about 7 weeks now, and noticed in the last few weeks that I'm never tired anymore. It's actually a bit weird! I've spent the last few years dragging myself around - lovely to feel a bit bouncier

A lot of DVD players are fine with US ones - you may be fine.

This Maria Elliot sounds interesting...I tried to explain in my pilates class tonight a bit about how I might of over done my kegals (!) but they didn't quite get it. I've got to write down all the info you've all put on here and take it in.

It's been so weird today not to feel my bladder all the time. I"m not sure if it's because of the AF pain or a hormonal thing...but it's certainly quieter than it's been for weeks.

that's GREAT that your bladder's quietened down! Wonderful news. How's the frequency been?

Here's a link to Maria Elliott's page - I've just mailed her to make an appt!

www.simplywomenshealth.co.uk/pages/chronic-pelvic-pain.php

The frequency today has been amazing...I can't remember the last time I've been so few times (in YEARS!!). Sorry to hear you had a few niggles today but as you say - it's probably just your bladder resurfacing ...it's weird to be so in tune with something that you never gave a thought to before isn't it?

Thanks so much for the link. I'll check it out.

hells, that's BRILLIANT! long may it last. I've been fine, really, just listening so carefully - aware of every niggle! Got to the stage now where I expect full-time good beahviour ..!

Lula - thank you so much for taking the time to post that...I think we've all been scared out of our minds by that forum (and even worse the US ones!)

So it's hugely encouraging to hear you beat this thing.

L&S - a couple more days like this would be fab! I have been pretty good about my diet so maybe that's helping a bit. Also (and I hope this doesn't sound too crawly!) you have really taken a lot of my huge fear away. I was getting extremely depressed about it all and it was a huge relief to hear from you and the others who were tackling this head on and getting results.

Lula, thanks from me too! It's such a scary thing - so encouraging to hear from people who've overcome it! Great to have back-up plans, as you say.

And hells, stay in touch and let me know how you're doing! Fingers crossed for some more good days. For some reason, I'm feeling very anxious again - I think because DS has chicken pox so I'm taking him north to my parents', where I was when the whole thing was at its absolute worst - feel almost superstitious about going back there (also DP is really unwell, and has to go into hospital this afternoon, and I won't be there ...). Anxiety always seems to make things worse for me, so having a minor flare-up - just a little more awareness, which in itself is anxiety-inducing! Thankfully, I'm seeing Deborah next week, so hopefully she'll be able to allay my fears. What a business!

L&S - sorry to hear DS is so poorly. It is no wonder that you are seeing an increase in symptoms...and it's probably something that happens with people who haven't even got IC (I read up loads on anxiety and increased frequency - seems a common thing)...it's just we are hyper aware of it (vicious cycle anyone?!).

Today is a pretty good day for me again. I keep remember reading on a site somewhere that this often happens...symptoms bad...then honeymoon period...then back.

Hope the journey goes well, your bladder behaves itself and DS sails through his hospital visit!

Rosa - how is your counting going?

Don't get too stressed out if it's a lot.I was going tons (probably once every 45 mins and at worst I wanted to go every second)...but already by cutting out the trigger things I am seeing a difference.

Hells - great that today's good too! Focus on that rather than the possibility of a downturn - even if that happens, you've got all the resources in place to tackle it!

I've had a medium day, annoying after having felt like I was basically better! Bad morning, but a bit better this afternoon. It's daft really: I know this is how it goes, and the number of good days is going right up, but it's alarming to have a less good day after such a good run!

I know! I remember I had a good day a few weeks ago and then bam the next bad day seemed so much worse because of it. But you are doing so well now aren't you. I read somewhere that it can also be linked to your menstrual cycle. have you noticed that your more likely to have bad days around a particular part of your cycle?

The dmannose powder arrived so I've taken teaspoon of that in water...just to see if it causes a flare or anything. Interestingly it also suggests a dosage after sex so maybe it can help prevent flares after that? Did you get a chance to ask Deborah about it or do you have to stick to when you have an appointment (I can ask her on Friday if you aren't seeing her for a while).

How did your DS's appointment go?

I'm amazed at how much energy I had today when I didn't have to spend my entire day in the loo! I got tons of stuff done on the house buying (lots of boring paperwork) and work was good too. That's why I'm determined whatever this is will be beat - I turn into the saddest, energy zapped person in the world on a bad day!

Actually, funny you should mention the cycle thing - I think I'm ovulating, and remember it was worse last month over ovulation!

I'm actually seeing Deborah on Monday so will talk to her about it then - I'm going to see how I feel tomorrow. Feeling much better this evening than I was this morning actually, which is a relief!

It was DP who had the hosp appt, and it was all ok - he has a stomach ulcer and a hernia (we're such a healthy pair!) and everything seemed to be flaring up, but the hospital said it would be ok. He's just waiting for a date for the operation now. Wondering if I feel better because I'm not worrying about him so much!

And I know exactly what you mean - I've done SO much at work in the last few weeks when I've been feeling better! Here's to lots more of that. I'm in email contact with another IC patient of Deborah's who had a similar diagnosis and test results as me, and she's now 8 months down the line and just celebrated her new, clear test results with some read wine and ice cream - looking forward to that point!

Poor DP! Glad to hear it's fixable though.

My very worst day was the day before I ovulated. Lots of the sites say people have it worse during their period...but for me (both this month and last month) it's been the best time. I will take this to mean I have a totally different thing wrong with me that takes just one week on Deborah's diet to fix

Wow - red wine and ice cream! How fab. Did she get test results from Deborah or her own dr? Would you ever go back to get another cysto just so that you could be told it's clear and you could wipe IC out of your mind?

Funny - same true for me! My periods have always seemed to be quieter. Weird!!

ANd interesting you should ask about getting another cysto - I would be tempted, a bit, but I think what I'm trying to get my head around is that the bladder is a symptom of other problems, rather than the problem itself, so hoping I'll be able to trust the improvement and let go of worrying! Easier said than done, as I realised today(!)

Hi,

Well, I'm up to 10 today and I reckon I'll probably do another 2 or 3 before the day's out!

I don't really know if that's a lot or not. It's less than I imagined. It feels like I'm going more than that IYSWIM. I kept a note of when I was drinking too (and what I was drinking). It's odd that sometimes there were big gaps (a couple of hours) and at other times I went 3 times in the space of an hour and a half. Didn't seem particularly linked to when I drank.

Periods are definitely the worst time for me.

Interesting that you mentioned anxiety. I have anxiety problems. Maybe I don't have IC at all. Maybe I just need to relax and stop worrying!

Can i ask if any of you get external pain?

I have had UTIs for over 10 years since a myomectomy when I was not catherterised at the time of the op but 14 hours later when I was screaming in pain because my bladder was distended and I could not pass urine. I have just finished a 9 month course of three types of ABs during which I had one flare up. Four weeks without any symptoms and now I have internal and external pain. Sitting down is awful and standing and walking not much better!!
I have seen a gyne and a urologist. Had a cystoscopy (which was ok but not pleasant) and scans of full bladder and empty bladder but no-one will commit to a diagnosis!

Please can you tell me more about the alternative therapists you see? I have been having accupuncture and reflexology but think that the last session of reflexology may have caused this flare up.

Any help and advice will be very gratefully received!

Hi gailforce, I had external pain when things were bad for me, but this has gone now. really unfun, probably my least favourite symptom. Can you say whereabouts the pain is, specifically?

And could I ask whom you have acupuncture with? It seems most acupuncturists tend to treat the condition as straight cystitis, which actually requires different treatment - I had acupuncture with one woman who was very nice but didn't help me. Then went to see a woman called Toni Tucker who specialises in it - she's wonderful, and I think has helped a lot. Whereabouts in the UK are you?

I see Deborah Grant at the Hale clinic for diet stuff, too - but actually it sounds like the trigger for you was the operation, so maybe diet not as important? Although possibly the ABs might have helped but also caused other problems ... Can I recommend a couple of books? To Wake in Tears and Along the Healing Path by Catherine M Simone - both good about healing from IC.

So sorry you're having such a crappy time. Do come and talk about it - hopefully we can help each other. One really nice thing I've found helps (tip from the Simone books) is taking herbal baths - basically, you put about a 1/4 of a cup of baking soda in the bath. plus a couple of drops of tea tree oil to kill any bugs, and then herbs such as comfrey in a tea ball. Really helps, esp with the external pain. Another good thing for that, if your external pain is vulvodynia (ie pain in and around your vulva, which mine was) is to wash after peeing, rather than using toilet paper. Makes a HUGE difference.

Rambling - that doesn't sound too terrible, frequency-wise. High but not crazy! Do you go as soon as you feel the urge, or do you try to hold off? And can you feel your bladder - do you get any pain? I think anxiety's totally wound into all this, whether you give it the IC label or not. Maybe just worth trying to do some things to soothe your bladder? One very easy thing to do is cut out caffeine and try drinking marshmallow root tea - you can order marshmallow root online. It has a high mucilage content and is very good for calming and rebuilding the lining of the bladder ..

It was 14 by the end of the day. That's not too bad is it?

Today I'm trying to cut out the caffeine. Sounds simple but for someone like me who can't function until I've had my morning coffee, it's quite a trial!

So today I'm going to avoid caffeine, drink more water than usual and drink peppermint tea. I'm also going to try to avoid sugar.

:(

Rambling that sounds very wise...just doing a few things now may nip it in the bud (so to speak!) - it seems from all the reading I've done that it's those that just ignore it that tend to have more dramatic problems.

When I first cut out caffeine I bought loads of caffeine free teas and coffees...only to discover they cause just as many problems. Supposedly 'safe' hot drinks are peppermint tea and chamomile. I'm actually getting quite a taste for peppermint tea (something I thought I'd never say!). And if you can stretch to mineral water try and stick to evian (apparentely that's the best one). If not a water filter will help.

I very much feel that anxiety is the key for me in this too...although I have had quite a few gyne issues which probably made me more vulnerable to things like this. You get just as many results if you google 'urinary frequency/anxiety' as 'urinary frequency/ic' so they are very intertwined by all accounts. And by far my worst symptoms are when I torture myself by reading the forums for IC sufferers. They literally spiralled me into panic and despair...really badly!

I've stopped doing that in the last few days and only allowed myself in the safe zone of MN!

Gailforce...L&S is the expert here - I'm just about to see Deborah from her & others recommendation (on Friday) so I'll report back. Sorry you are going through so much - but we are learning that there are loads of things that can be done to soothe/heal this sort of thing so do stay here and we'll learn together (does that sounds bit hippy dippy!). I'm like Rambling...I don't have any pain (I did have a sort of 'pressure' thing though) but then I've only had symptoms for about a month. Even if I haven't got IC - I've had 4 rounds of antibiotics in just 4 weeks...so I want to blast that out of my system at the very least.

L&S - I was just about to come and post about the washing thing. I've started reading the Angela Kilmartin book and she is OBSESSED with washing! Obviously I used to wash before (!) but not after every loo break. Now I do. And if I'm at work I just wet a bit of loo paper with cool water to take to the loo with me as obviously it's not practical to do a full wash in the communal loos!!!!

That is also part of her 'trick' for avoiding flares after sex. She suggests drinking water 20 mins or so before...loo just before then wash...then straight after loo plus wash plus lots of drinking water.

I'm also ensuring I only use simple soap.

I've take another dose of dmannose...so far so good. Certainly not causing any bad effects.

I love the bath you've described. I'd been too scared to take a bath at the worst of it but in desperation took a hot bath with nothing in it (no fragrance stuff or anything) and it made such a difference...so I shall upgrade with all those lovely additions! When you say baking soda is that the same as Bicarb?

Blimey I do blabber on. I hope everyone is having good days today and that loo breaks are few and far between!

Hey Rambling, I don't think it's too bad! Higher than average but manageable. Are you in any pain or discomfort?

No, no pain. Just feel the need to wee a lot! So maybe not IC. Maybe just anxiety-linked frequency or something? I've been a lot today but I've been drinking more water and herbal tea than usual (peppermint as you say HellsBelles).

Good luck with your appointment on Fri Hells.

Rambling - apparently you can have mild IC with no pain...but as we've mentioned IC seems such a catch all term...it's used to describe anything pretty much with those symptoms! Fingers crossed cutting out all the caffeine works quickly for you.