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DawnCOB

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Posts: 4,496
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THIS IS A MEET AND GREET SECTION TO TELL US MORE ABOUT YOU. IF YOU HAVE QUESTIONS THAT YOU WOULD LIKE TO ASK AND RECEIVE AN ANSWER CAN YOU POST ON THE MAIN BOARD BELOW PLEASE. CLICK ON NEW TOPIC TO WRITE A NEW POST.

YOU MAY ALSO FIND IT HELPFUL TO READ FAQ SECTION ABOUT HOW TO POST ETC.

http://cobf.websitetoolbox.com/post/COB-Forum-Welcome-FAQ-2013-5042862


There are many pages in this thread. 

For further information on bladder conditions and to receive a COB information pack email your name and address to info@cobfoundation.org

Hello,

Im Dawn and 44 years old. I have had bladder problems since the age of 12. Diagnosed with IC at 18, and several other diagnosis through the years of OAB + Bacterial Cystitis. I have found diet, urethral/bladder stretches to be helpful in controlling my symptoms. There are many other treatments now available.

I have been a member of COB for 18 years, 16 years as a local co-ordinator and 13 years as board moderator.

Thankyou for using this board and sharing your information and experiences, this really does make a difference.

Dawn.

Update Jan 2013

Claire035

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Posts: 679
Reply with quote  #2 
Hi,

I'm Claire and also 35. I have recently been diagnosed with IC after only 4 months of symptoms. My symptoms are quite mild being only frequency and pressure. I am hoping my cystodistention will start to benefit me. I have just started taking Amitriptiline and am waiting to start cystistat installations.

I have been married for 12 years and my Husband and I run a small building contractors together (he's the brawn, I'm the brains!) We have 3 lovely children and an equally lovely Border Collie called Smudge.

I have had trouble 'getting my head round' this condition and would like to formally thank all of you for giving such wonderful help and support. It's been a real lifeline.

Best wishes

Claire
Gemma

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Posts: 637
Reply with quote  #3 
Ooh, I love border collies!

Hi there,

I'm Gemma, I'm 22, and am a Newly Qualified Teacher (primary).

I've been diagnosed with IC since Summer 2003 and have been suffering since Summer 2002.

I live with my boyfriend Rob in Norwich. He is Australian and we aim to travel in 3 or 4 years time and perhaps settle in W.A.

I have suffered with 'unlucky' health experiences in developing countries (!) and am determined to conquer IC. I believe knowledge is power and that many doctors tend to have too much of the latter and not enough of the former!!

I do not suffer from urgency, but from occasional frequency, constant pain, pressure and spasms. I use a lot of supplements to try and ease my symptoms and am about to start Tibial Nerve Stimulation followed my Cystistat.

I think the board is hugely helpful and supportive.

All the best,

Gemma


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Posts: N/A
Reply with quote  #4 
Hi

I am 48 with 2 teenage children aged 17 and 15. I used to teach English, now do a bit of primary supply and am qualified to teach dyslexics.
I have had bladder symptoms - off and on - for over 20 years after UTI, although i had very mild symptoms for many years and some years of complete remission when i took Chinese herbs.

I have found out almost everything about IC through the ICSG/COB - been a member for 7 years. I have tried acupuncture, homeopathy and diet, and have now started taking ranitidine which I think helps.

I like walking, writing poetry, gardening, reading.
JaneW

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Posts: 1,488
Reply with quote  #5 
Hi,I'm 43 and live in Somerset.I've had IC since 1981 (diagnosed in 1997) and have more pain than frequency due to bladder ulcers.However since I've been avoiding trigger foods and had a course of acupuncture my bladder has been much better.
I also have relapsing/remitting Multiple Sclerosis and Pericarditis and am currently having investigations for stomach/bowel problems and weight loss.
My partner John is very supportive.He has a rare genetic muscle disease called Central Core disease and ulcerative colitis (what a pair we are !)
I live with my mother,younger sister Sarah and our 2 eccentric cats Wilbur and Daisy.
I spend a lot of time involved in genealogical and photographic research and am hoping to set up in business dating Victorian and other old photographs.I spent a few happy years as a psychiatric nurse before I became ill.
I've found this board very helpful.My love and best wishes to everyone.Jane W XXX
KC

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Posts: 123
Reply with quote  #6 
Hi

My name is Kathryn and I am 38 - I have two children aged 15 and 2 and a half. I work full time and I have been suffering since March. I have recently been diagnosed with early stage IC. I take Amitryptiline at night, Cimetidine, MSM and Cystoprotek. I am currently receiving Cystistat instillations which seem to be gradually helping. I use TENS for the pain when it is bad but thankfully with Custistat I haven't needed it the last few weeks. I use Nurofen and Clarityn if I have to go on a long car journey as it seems to calm things down. My main symptoms are pain (not so much now) and urgency. I don't get any warning or filling sensation just that 'got to go right now' feeling which is horrible when it happens in work as I am a Personnel manager and have meetings, visits etc to do. I was off work for 5 months and thought I would never get back but I did. I hope this will give hope to those of you who work and are worried about it. I found the message board invaluable when I was off - my lifeline.

Kathryn
Em

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Posts: 775
Reply with quote  #7 
Hello

My name is Emma (was known as Emma-Louise on the old board!), i am 22 years old and live in Basingstoke, Hampshire. I live with my boyfriend of five years, Matt & my cat, Bobbi.
My problems started near enough five years ago, when i was 17. It seemed to start with a very nasty U.T.I, which wouldn't go away -- it took 6 mths of long-term antibiotics to rid me of it. And left me with a really battered immune system. I then went on to have more U.T.I -like symptoms, but tested -ve for U.T.I.
It took about a year and a half for me to be referred to a uro. They tried me on detrusitol 1st, which i had an allegic reaction to. Then they decided to do a cystodistention + biopsies, as they "suspected" IC. Low and behold four years & a bit, of constant pain, frequency & urgency... i had a diagnosis, which was moderate IC.
They wanted to start cystistat instills straight away... unfortunately that clashed with me moving house (to another county) & so would need to change hospitals...

To cut a long story short... my new uro wants to do a urodynamics study, as my old hospital have lost ALL of my notes! He had one scruffy bit of paper from them!
He thinks that after urodynamics... he will try DMSO, with the help of pethidine (he said it's going to hurt!!!!!).
The self - treatment i've tried/am trying consists of TENS, Co-dydramol, marshmallow root tea, Uva-Ursi, Aloe Vera, hot water bottles by the dozen! And most importantly, my counsellor!

I've had to give up my degree & part-time job because of IC. I am so bored!! I have decided that when/if my IC becomes controlled i am going to pursue a career in veterinary nursing!

Thanks to the COB for providing this board! Don't know what i'd do without it -- it is definately a lifeline!!!!!

Also big hugs & thankies to Katie -- ya silly txt's brighten up my day!!!!

Love & Hugs to all the IC'ers out there!

Cheerio

Em X
Anne

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Posts: 162
Reply with quote  #8 
Hi My name is Anne and I live in Cheshire. I am 48 years old. I was diagnosed with IC in the US in December 98. I did have a few problems in the UK with bacterial cystitis before moving to the US but things came to a head in 1998. We lived in the US for 5 years and I saw a wonderful urologist who also researches in IC.

I have tried most of the medications and I suffer from side effects from most of them.

Here in the UK, it has taken me a while to find a urologist who actually knows about IC. We have been back a year now.

I have just tried Elmiron again, but I am still suffering from terrible side effects from it although it does help my IC.

Now I am controlling my IC with diet only. I don't have much pain unless in a flare, but I do suffer from frequency esp at night, and retention too.

I have been married to my 2nd husband, Chris for 6 years and we have 2 toy poodles, a red standard poodle and 2 falabella horses. I do heelwork to music with my standard poodle and I am showing my horses.

Anne
Kathleen

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Posts: 7
Reply with quote  #9 
Hello my name is Kathleen, I am 42 and live in Cheshire. I haven't been diagosed with IC and am a bit unsure if I have it or not. Don't really have pain but since my 1st UTI in July I have discomfort and feeling like I need the loo a lot of the time. I take detrusitol which means my frequency is normal. Have good and bad days some days feel perfectly fine other days have that "loo" feeling most of the day and sometimes discomfort when going but all samples come back negative, due to go back to hospital in Feb.

Have 3 children 17,15 and 10, work in a college library part time, am a completely mad footie supporter and go regularly with my young 10 year old son as well as watching him play in the cold on Saturday mornings Happily married for 19 years .
Sarah

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Posts: 244
Reply with quote  #10 
Hi I'm sarah, I'm 33 and live with my partner in Cambridge. I am a teacher and work full time. We do not have children but would like to try once I get this all under control. I currently have polycystic ovaries but no diagnosis to anything else despite various tests I have had. I am seeing a consultant soon who wants me to have GNRH injections to shut down my ovaries to see if this effects my symtoms at all.I do feel I have a hormonal connection to my symptoms. I am very wary of having this though due to side effects ( menopausal!) and am going to discuss it further. I vary from being very positive to depressed at how my life has changed.My symtoms are pain- which varies to manageable to unbearable-and a feeling of pressure on my bladder so i feel i need the loo all the time even though I know I don't need to go. I have had bouts of what I thought were UTI's for years but they always came back negative with no bacteria, then in March last year my current symptoms started and have not gone away. Interestingly my Mum suffers from a similar thing but less severe and she can control hers by drinking 2 litres of water a day. I take clarityn, 30 mg of ami at night and am now about to try 300mg of rantidine to see if that helps at all.
I do not know how I would have coped with all this if I had not found this board and a big thank you to all who have given me support and help over the last year.
HelenHulbert

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Posts: 459
Reply with quote  #11 
Hi Everyone my name is Helen I am 47. I used to be an Employment Development Officer before my ill health, and really miss all the travel and company my work brought. I've had a lot of personal problems this last year and sincerely hope that 2004 is as laid back as it can be with IC etc! If not, I have plenty of material to write my first book! Very isolated and depressed before I discovered the message board, everyone on here is absolutely wonderful for support and information. My IC followed a history of UTI's and a real bad one whilst in hospital having an hysterectomy and it wasn't treated for 3 weeks. Would love to do more to help people with IC. My one claim to fame is that a local G.P wrote to me for advice!! Hope we all improve a little in the coming year.

Love Helen

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Helen Hulbert
Jane

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Posts: 24
Reply with quote  #12 
Hi there

I'm Jane, 41 married to clive who is an Aussie but living in the Uk @ present...

I've had IC type conditins for 3-4 years, but been diagnosed for aobut 1. I tried cimetadine, but ther was noevidence that it was making any real difference so now take detrusitol & am waiting for the supplisers of DMSO to supply it so that I can start that. I'm nervous about it, but reckon that if there is hope I ahve to try. I had a very bad patch Sept - Nov but am pretty stable @ present, not idea what sets me off, except maybe too much MSG??

I cycle as my form of transport which can be uncomfortable at times & work as an ordained minister, so sometimes services are quite hard work, if you see what I mean.

The board is a great encouragement when life gets tough.

Jane
Jenni

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Posts: 40
Reply with quote  #13 
Hi Im Jenni. Im 58 years old and live in Exeter, Devon.
I have been 'bladder aware' all my life and always need to make more toilet visits than anyone else I knew but it was not enough to disrupt my life.
Three years ago after a back injury compounded by several weeks of stress, I woke up one morning with symptoms of a UTI. There was however no bacteria in my urine sample.
My life from that moment became one round of pain, pressure and visits to the loo. The frequency now affects my life especially my sleeping pattern as I have to get up 7 or eight times even on a good night. I Have had an ultrasound which did not show up anything abnormal, but am reluctant to put myself through too many invasive tests which might make matters worse. The URO I was referred too was not very helpful. At present I am putting up with things and managing to hold down a part time job.
annabel

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Posts: 6
Reply with quote  #14 
Hello,

My name's Annabel, I'm 25 and I live with friends in London. I was diagnosed with IC about 3 years ago after a few months of symptoms (thanks to the internet! My GP kept telling me to drink cranberry!!). My case is fairly mild but the symptoms of pain/discomfort and frequency are constant. It hasn't impacted too much on my life thanks to my lovely boyfriend but it has made me scale down some of my career ambitions. I currently work as performing arts administrator but I'd rather be an illustrator/best selling novellist!

In terms of treatment, I haven't really found much that makes a difference but I've only tried cystistat and atarax. I can manage it (just about) without medication for the moment so I'm putting off the hard-core pills until I really have to. I'm planning to try acupuncture and/or reflexology soon but have had minimal success with herbalism and a terrible experience with a nutritionist (told me to drink fruit juice because it turned alkaline in the body... ouch ouch!).

I'm being checked out later this month for signs of suspected endometriosis which might shed more light on my IC...

This site has been a great help and I hope you find it useful too.
x
Annabel
Alison

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Posts: 96
Reply with quote  #15 
Hello everyone,

I am 48 years old, have a wonderful husband and two wonderful grown-up children, who have all been very supportive. I don't know how I would have coped without them!
I have had IC for 7 years, diagnosed for 3 years. My bladder pain started the same time as my lower back pain, at a time when I was trying to keep fit by going jogging and doing extra exercises. I think all the extra activity started my problems. I was in so much pain I had to give up work, could not drive, walk for long or sit down for long periods of time, so, as you can image, I was feeling very sorry for myself !

However after changing my Doctor and urologist I am now feeling MUCH BETTER. My continuous pain is now just a continuous ache, which is much easier to live with, so I now feel I am getting my life back

I do not suffer with urgency or frequency, although I do go to the toilet more often than normal.

I stick strictly to the ic diet.
Have been taking Elmiron for 15 months
Clarityn for 2 years but have just been given Hydroxyzine to try instead.
Have just started on Detrusitol which seems to be helping too.
I also take prelief, milk of magnesia, and Tums.

I have found this site to be a great source of support and advice and would like to thank everyone concerned.

I wish you all well,
Alison
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