Anyone from the UK?

[LauraLuLu]

Just wondering if anyone's posting here from blighty!

[Traysmum]

Hi Laura, I am from the UK too,

Anne

[Eccles]

Hi Laura, I'm from the UK too. Have you found the COB foundation message board?

http://www.websitetoolbox.com/tool/mb/cobf

[vicky Gordon]

Hiya,

I am from the uk also

[LauraLuLu]

Oh, so there are a few of us then!!

Hi Eccles, yes I've had a look at that board but haven't joined or posted as yet.

So, if you guys wouldn't mind telling me, how do UK doctors approach diagnosing and treating IC?? I'm not diagnosed yet but do have the symptoms so I am wondering whether to go back to the docs and let them know, but I am a bit scared about what tests etc this would involve... can't decide whether to carry on as I am (trying the IC diet and herbal supplements, have noticed *slight* improvement in just one week) or go to the docs and maybe get diagnosed and treated.

So anything you could share with me about getting diagnosed in the UK I would very much welcome!

[Traysmum]

Hi Laura

sorry to have taken so long in answering but I have been away. I wasn't diagnosed in the UK but in Oklahoma. We used to live in the US, but came back to the UK in 2003. I must admit the doctors and urologist I have used in the UK don't know anything compared to what I was used too in the US. Even my urologist admitted I knew more than him!! Anyway now I kind of control my IC with the diet. I am on gabapentine for another condiiton but I have found it helps my IC esp with nocturia.

Anne

[Angie]

Hi Anne

I'm from UK the too, and not far from you by the looks of it! Where in S Yorks are you?

Love Angie

[LauraLuLu]

I think you must mean me?

You're not far away at all- I'm in Rotherham! Fancy that, small world eh.

[StayingStrong]

hi -i'm from leeds and got diagnosed with this last week x:hi:

[LaurenEngland]

Yes, i am from Lancaster - north west

[Stephp1]

Hi there,
My name´s Steph and Im from the UK. Living and working up in Newcastle upon Tyne! It´s great to know there are others here from the UK. :)

[LauraLuLu]

Staying Strong, if you wouldn't mind (you can private message if you wish), how long did it take you to get diagnosed from the time you first saw a uro, and what tests did you have?

[Stephp1]

Hey Laralulu,

Theyll try probably try you on various meds and see how you get on. I started with low dose antibiotics, then went onto ones for over active bladder, then more IC type ones, like amitriptilyne.

They pretty much did every test on me and then when they couldnt find anything physically wrong, except inflammed urethra they diagnosed me. ve had two urethral dilatations, where theyve stretched my ureathra and one bladder stretch, hydrodistention. Of course this is just from my experience.

It´s true, Im up north too and Ive been under urology for almost 3 years now and to be honest theyve not been that great. Im convinced it is because theyre are no women on the team and surgeons just want to correct something.

I then went through a gynae, now onto the infectious disease specialist, where Im convinced I should have come a long time ago . I think everybodys path is different, but Im convinced that my problem is due to an undetected bacterial infection. Ive also recently been diagnosed wity lyme disease, but my Inf.dsease dr is just running some more tests.

It is a long journey, but you just have to be patient and try different things to see what works best for you. This site is really great and it has definitely helped me. I wish you all the best. Let me know how it goes anyway.

steph

[LauraLuLu]

Thanks Steph! Will do x

[Belfastgirl]

Hi all! I've been diagnosed in the UK with irritible bladder and pelvic floor dysfunction. I also have IBS, food intolerences and multiple allergies. It has taken 10 years so far. The advice I would give is don't be fobbed off by doctors who say "I don't know what's wrong" or just try to give you repeat antibiotics - ask for a referral elsewhere. If you have BUPA it's much easier. The other thing about UK doctors is that (especially on the NHS), they are much less happy to accept patient challenges than in the US and don't push the boat out. But keep asking.

My take on the "IC or not IC" thing is that US doctors call a whole range of different conditions "IC" which UK specialists (when you can find them) tend to disaggregate and treat separately. The UK approach has largely worked for me, but you need to find a good specialist.

I had a great urologist, who referred me to a dermatologist (there's a specific set of patch tests you can do for vulval skin sensitivities), a GUM specialist who told me I had a chronic yeast infection (surprise) and a gastro-enterologist, who did the York food tests and found the food intolerences. I find that my bladder is much worse when my IBS is bad. The urologist also diagnosed the PFD and put me in touch with a specialist physio.

The good news is that with all of this, I am MUCH better than I was - no frequency, just occasional urgency, and some pain about 20% of the time. The bad news is that the urologist is now off on long term sick (no, not my fault!) and he seems to be the only one in Ireland specialising in female urinary problems...

Keep on asking questions and keep a file (if you are moving between specialists, your notes will not follow you). Good luck!

[LauraLuLu]

Thank you SO MUCH! That is really good advice and very reassuring to hear. I am glad that you had other tests done too because I always fear that drs can take things into isolation too much... and was worried that I might have other problems making THIS problem worse... e.g. I have noticed that these tablets make me constipated, and when I'm like that my frequency gets a lot worse... and everything feels kinda 'tight' down there and hard to relax... anyways, I digress. It's just reassuring to hear that the urologists can diagnose other things and refer on to other specialists, I was beginning to fear I was just going to have to try tablet after tablet with not much luck!

[kjd]

hi i am from Hull x