Anyone from England

[Traysmum]

Hi there!

Is there anyone on this board from England?

[Jess]

Hi

Im from England

[Traysmum]

Hi Jess

Where abouts in England are you from? Do you have any problems with your GP? I have just returned to the UK after living in the US for 5 years and having trouble getting referred to a Urologist. I just wondered is there any doctors out there that do know about IC!!!!

[PaulaJ]

Hi, I'm from England (London). I'm having the same trouble as you, finding a urologist that knows about IC. The urologist I was referred to by my GP does not acknowledge IC and was dismissive of my pain and symptoms. So I'm trying to find another one, will let you know if I find one, will you do the same for me.

[Traysmum]

Hi Paula

Yes, i will do the same for you. I now have to wait at least 12 weeks to make an appointment with a urologist and then another 4 weeks before I actually see him or her. then I won't know if they know anything about IC until I meet them. How I long to be back in the USA

[Janetbb]

Hi,
I live in Plymouth in Devon and we do have Uros (some) who understand about IC. I've been on Elmiron for about 18 months now and it has helped with the pain but not the frequency. It isn't easy to get Elmiron here because it's not a licenced drug and it takes a while for the doctor to do the paperwork to get it for us and the doctor prescribing has to take personal responsibility for any problems that may occur. If you go to the UK interstitial cystitis website, on www.interstitialcystitis.co.uk you will find details about how to contact the national office and they may be able to advise you. OK? Best wishes,
Janet

[Traysmum]

Hi Janet

I lived in the States for 5 years and that is where I was diagnosed with IC. I now live in Cheshire and having great trouble with GP's and Urologists.

I have been on Elmiron and I suffered from the side effects and cannot take it any longer.

My urologist in the UK, said you can't diagnose IC without a biopsy and this is nonsense. I was seen by a Professor of Urology in the States and he is one of the five that is researching IC. If he said I had IC then I believe him. I do not want to undergo yet another Cysto etc because it made me so ill last time. It took me 4 months to recover.

I am a member of the UK IC group, in fact I belong to two. As I have been told I can't be diagnosed with IC in the UK now until I have had a cysto, I am going to go it alone.

[Elli]

hi

Here are a couple of links which may help people in the UK.

http://www.specialistinfo.com
This link will give you a complete listing of Doctors/Specialists by area and speciality, allowing you to search by disease or condition.


http://www.b-p-s-a.org.uk/
Bladder Pain Syndrome Association
This is an excellent support group in the UK, which covers all different aspects of bladder pain, not just IC.

http://www.interstitialcystitis.co.uk/
This is the UK IC support group.

Hope some of these will provide useful. Feel free to email me if you wish. mailto:[email protected][email protected]</a>
Healing Hugs xx
Elli

[Angie]

Hi
I am from England too (Sheffield) and I am lucky that there are are uros here who understand about IC. I've been on Elmiron for 5 months now and it's fine so long as I give the hospital plenty of warning that I need the next batch ordering!
Although I had a cystodistension, it was my choice (my uro would have started treatment without it) and he didn't take a biopsy - said there was no need.
I don't know where in Cheshire you live, but there is a urologist in Crewe who is a specialist in IC - I don't know whether I can mention names on this site - but if you go to www.urology-leighton.co.uk, you'll find him.
Hope you get somewhere with all this!
love angie
xxxxxxxxxxxx

[Gabriel]

Hello, I'm also from England (Oxfordshire).

I'm not diagnosed yet but have most of the symptoms. I'm currently going through the motions with my GP trying to reach a diagnosis. He's fairly open-minded fortunately, but likes to take things extremely slowly, which I suppose is for the best. It just doesn't seem that way when the symptoms flare toilet

[Traysmum]

Thanks Angie for the reply. I know about the urologist you have mentioned in Crewe. I live in Warrington and it is quite near. i would have to see him privately though i think.

I have also been told that he will want to do a cysto and biopsy too. I was told you can't be treated with IC in the UK until you have had a biopsy. You have made me feel better if you haven't had one done.

I am going to phone the urologist in Crewe and ask whether he would do a cysto or could I see him without one.

Thanks again