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.

I have no shame Beta - I will be happy to discuss my gut leaking results (!) Hopefully all will be revealed on Friday. I'm still dreading the diet she'll put me on though. I love food (and drink) so much.

I finished my AB's about 10 days ago now and since then it's been pretty much better other than a few blips.

But now I've had a wake up call on this I want to make sure it doesn't happen again so I'm certainly going to continue down the alternative route to make sure I get rid of whatever caused it (and sort out whatever the constant AB's will have done!)...

ILMH- bit of advice . Make sure that your prolapse really warrants surgery...

do you know how bad it really is? Sorry to ask, but your cervix should normally be a middle finger length inside- if it's really low then yes, you might need surgery. Hysterectomy is only 1 option and yes, it does carry the risk of earlier menopause ( evenleaving your ovaries which they would)so don't go down that route if they offer you a repair instead.

There is evidence that any tampering down there can cause or make worse IC.

I thought my mild prolapse was making me run to the loo- had it fixed and problem no different- found out years later by reading etc and forums that I had IC.

Severe prolapse can interfere with bladder and bowel function, but you need to find out if it really the cause first.

If i was you I would opt for a repair- a hysterectomy is a much bigger op and greater risks.

It is a bit lower down and it feels in the wrong place iyswim. I wouldn't rush into surgery, I was just fantasising about not having any more periods or pmt

My frequency has now gone, so I think the antibiotics are definitely working. Just hope it doesn't return. The gp shouldn't have given me Trimethoprim for pylonephritis last year. I didn't make enough of a fuss about how ill I felt - If I had they'd have given me the Keflex back then.

I'm really annoyed that I had to tell the gp that nitro isn't effective against pylonephritis - she asked me where I'd heard that I told her that I'd done about an hours research online "Now gimme the right meds or I'll eat your prescription pad" I've been ill for months with this

hope you feel better. BTW you would still get PMt without a uterus!

Do you? Oh, that's no good I need a bit of stability in my life now

Hey all, checking in. ILMH, so pleased the ABs seem to be working and at your GP. So frustrating that we have to work all this stuff out on our own.

Beta, wonderful that the prelief is helping so much!! really sounds like it's had near-miraculous effects! Keep us posted?

All ok with me. The sex seems to have been consequence-free! 48 hours now, and no more pain or frequency. In fact, I've had a great three days - felt pretty much symptom-free. Bit tricky to tell today as I have my period, so a bit of period pain which may be masking bladder niggles, but only been to the loo four times today () - really starting to feel like I can totally rely on my frequency again. Now just have to iron out the remaining pain and start eating semi-normally again

hey, that's great L&S. We all seem to be improving a bit I think. Let's hope this is the start of something good

Hi everyone

I have ordered some prelief!

Hells - I emailed the Doctor you gave me the details of - he said it sounded more like Overactive Bladder...not sure how you really know the difference in the early stages. Good luck on Friday anyway - I shall be checking in on Monday to hear how it went (after I get back from my exciting weekend in Florence where I will indulge in everything I fancy - plus lots of Prelief...fingers crossed it works)

I've also decided to go back on the 6 week course of antibiotics and in the meantime make another appointment with the urologist I saw a year ago and start pushing for some definitive diagnosis.

Not feeling too bad today but definitely not normal.

Glad the Anti Bs and Prelief seem to be working for you guys - it's heartening to hear.

Kitsilano - what size package?

They didnt have any 60 tablet packs left but didnt tell me so I just sat waiting. I rang them in the end and they put a new order for a bigger pack through and got it to me in 2 days.

Given that you are going away I would ring them today to make sure it is coming ASAP.

Thanks for the tip BeenBeta - I will call them

Hey Kits, exciting about the prelief! It feels as if it's been one of the star turns of this thread!

Anooyingly having a slightly less good day today- feels so picky of me to complain when I'm so much better, but I have what I can only describe as an 'itchy' bladder - feels really irritated! So annoying! No pain, no frequency, just this itching. Ugh. I keep telling myself it's because it's healing ...

Hope everyone else has had good days. Beta is the prelief still doing its thing?!

HI all,

Kitslano - I bet you can't wait for Florence! I'm so jealous!

It's interesting he said the same to you. I know there is an argument that overactive/sensitive bladder could just be the beginnings of IC...but I'm hoping that it's just our warning to take things easy for a bit and get it sorted.

I'm so excited about prelief seeming to be a possible help here. I must admit that the logic behind it made sense to me when I read it. Having said that I think it sounds like a tool in our kit (so to speak)...rather than a cure all. Once I've got my prescription from Deborah and am further down that line I would most definitely use it before 'danger' meals!

L&S - I'm sorry you've had a little more 'awareness' of your bladder today. But from an outsiders perspective (I hope it's ok to say)..it really seems like you are having many more good days than bad days even from when we first started chatting on the thread which was not that long ago. I've just started reading the Catherine M Simone which is very interesting (thanks so much for recommending) I feel like it's cementing a lot of the theories I've been swirling around in my brain (from all of learned from you, forums, research, other books)...it's a really good book. Plus I'm so excited about my up and coming treatment with Toni Tucker. I think I've had acupuncture once, about 15 years ago - so this is going to be a big thing for me...but I can't wait!

I went out with some lovely MN friends last night. Knowing that I will be on Deborah's diet soon enough I risked one (large!) glass of wine while I still can. And I'm pleased to say that there has been no real nasty effect. I'm a little more frequent but certainly managable. And it was rather good for me to drink just one glass...normally at something like that it would have been a lot more and I would have had a mega hangover to contend with.

Oh Hells, you will LOVE TOni. She's utterly, utterly marvellous. As well as helping me so much with my IC, she also reversed a back issue I've had for years in a single treatment. Genius! When's your appt?

In other IC news read a post on an IC blog I follow (by a woman who reversed her IC through diet/acupuncture) about stem cell treatment offering a possible full-on cure. Realise this is a way away, but it seems at the institute in california where they're conducting the research, IC is one of the things they're focusing on. Great news for the future - hopefully we won't need it, but doubtless others will. Come on, you scientists

And also, thanks for reminding me I'm improving! This is why I NEED to keep a record - on my 'bad' days I always forget! terrible trying to be both subject and object.

Great news the wine didn't cause too much of a problem! And glad you're liking the Catherine M Simone. I think she's very good indeed. Was in tears reading her story!

It's on Saturday...I think I mentioned I have back problems too - so when you explained how much she'd helped with your back it made me all the keener to see her.

You are so right about keeping a record. I was keeping a daily record of everything when I was feeling so rotten...and of course now I'm feeling so much better I don't bother...so one slightly niggly day and I get so down again. I guess this follows our theory about forums...people don't bother to stay on or keep track when they are just out and about and living normal lives.

That is incredibly exciting news about the stem cell research. I am truly ignorant about how this sort of thing works though..can you use donor stem cell? I actually have DD's stem cells on store (I'm a sucker for all this sort of stuff)...I wonder if she could be my little IC cure?! Having said that - I reckon we are all well on the way to sorting this out without that (but it's good to have another back up plan - along with our LA trip )

How is everyone? Hoping the silence is due to good health across the nation

All ok with me, though still struggling with annoying current symptom of bladder-itch! Spoke to Deborah yest and she assures me it's A Good Thing - evidence of die-off, rather than IC. Fingers crossed!

Hells, totally agree about multiple back-up plans! How are you today? When's your catch-up with Deborah?

Not bad, ate plenty of trigger foods yesterday but not too much reaction.

I notice when I dont take the Prerelief I do feel less good. Its definitley acid which is my problem and the Prerelief shows that. The thing is it seems to work better than Gaviscon or any of the proton pump inhibitors like Ritidine or Omeprazole.

Its the acid in my guts that seems to be upsetting my bladder. Not sure how that works but am sure of that now.

Beta, that's really interesting. I wonder if there's anything you can do about it on a more permanent basis, now you've pinned it down? Sounds like leaky gut, doesn't it?

Hello L&S & Beta

L&S sorry to hear about the niggles...I know Deborah did warn you that the change in treatment would bring this all on but it's hard to deal with after you've been so much better for so long (but ultimately positive that it's proof it's working). I see her t/m first thing. I'm absolutely a jangle of nerves at the moment because we are just hours away from the house exchange and there is so much to sort out - last minute stupid queries/bartering...it's driving me mad.

Beta - it's encouraging about the prelief but as L&S said, now you have started to feel more sure that it's in connection with a leaky gut then sorting that out may be a more permanent solution. I'm reading through the book L&S recommended - Catherine Simone...and it's so interesting to read how strongly she feels it's about treating the body as a whole rather than the bladder symptoms...although of course it all takes a lot longer than way.

L&S/Hells - interesting about leaky gut. I have gone on and on to doctors about my guts for years as it alwys seemed linked to my bladder. None of the doctors mentioned leaky gut or indeed made any response at all.

The thing is just before I started with IC I had a really bad bowel infection after a holiday in Corfu. It took months to get over and then IC started.

I have had endoscopies but nothing ever shows up.

The only thing that did show up was in my biochemical analysis. That showed I had low intracellular magnesium that indictaed my immune system was churning over eally fast. That woud be consistent with leaky gut. I also have symptoms of a coeliac which is an autoimmune problem.

Question is - how do I cure a leaky gut?

Beta - from everything I've read it seems that you have to go down the 'alternative' route to sort it out. The practioner L&S and I are seeing would be able to help - I can't recall if you are based in London - her name is Deborah Grant (she practices at the Hale Clinic)...but there is no doubt it's very expensive. If you don't want to go down that route it may be worth reading the Catherine Simone book as she talks about all the different things she did to help solve the problem.

Hey Beta - the woman Hells and I are seeing actually specialises in that, I think. If you're local, maybe worth seeing her? It's not cheap, of course, unless you have medical insurance?

Hells, erk, good luck with the house! And let us know how it goes with Deborah tomorrow. I'm feeling pretty crappy today - bladder itching plus upset stomach, all pretty much as advertised but unfun! - so I think I'm going to take myself off home in a second and see if a bath and a lie-down helps!

L&S - hope the bath makes you feel better. Did Deborah give you any indication of how long it would feel rotten for? As I've been so much better for so long I'm going to find it hard going if the herbs bring it all back...so we can commiserate together! I've just been reading the Catherine Simone bit where her bones keep popping out of their sockets...I am pleased to say I haven't had that yet...! Also she backs up in her book all about the 'getting worse before you get better' stuff...she mentions it quite a few times.

I didn't realise Deborah was covered by health insurance - yikes! I better get it sorted (I have got insurance).

Hey Hells, not really - I think it depends on the individual very much! She did tell me to expect it, so I'm focusing on that. At the minute it feels like I have thrush, sort of on the outside and in my bladder, which would make sense if I'm having yeast die-off! I just have to soldier on I think. And yes, you're write about Catherine Simone saying about getting worse first - worth it in the long run!

I'm going to get health insurance with my work as soon as I can! Right. Home. Will check in later

I think I will get that book. I went down the alternative route quite expensively about a decade ago but nothing really worked. Maybe the book will give me some clues though where to start from.

Just to interupt- are you sure you can get herbalism on your private insurance?

I have had loads of alternative type treatments over the years but none was covered by insurance- the dr etc has to be on a recognised list. You also need a referral from your dr in most cases in order to be covered by your insurers.

Happy to be proved wrong- just querying it