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Posts: 12
Reply with quote  #61 
Hi My name is Sophie I was diagnosed with IC yesterday and my Urologist has suggested I research on the internet and join a support group so here I am. I am 26 and have been married for 6 months I am going in for a Cystopscopy and bladder distention on Thursday (1st July).

Posts: 12
Reply with quote  #62 
Originally Posted by Sophie
Hi My name is Sophie I was diagnosed with IC yesterday and my Urologist has suggested I research on the internet and join a support group so here I am. I am 26 and have been married for 6 months I am going in for a Cystopscopy and bladder distention on Thursday (1st July).


Posts: 13
Reply with quote  #63 
Hello, my name is Lindsey. I'm 33, married with two children aged 3 and 5.

I've had IC for the last 3 years. It started suddenly like a bout of cystitis and has not gone away since. I came upon this website last night in desperation after having a nightmare day. I have good and bad days, sometimes I can put it to the back of my mind, other days I feel like I'm going to crack up. Trying to get a decent night's sleep is the worse thing.

I feel a bit more positive after looking at all the different messages, and I'm determined to try changing my diet as I didn't know it could affect things so much.

I'm having cystistat treatment at the moment. I'm going for the 3rd time today. It's not made a difference yet, but my doctor has said that hopefully after the 4th or 5th time, I should see an improvement. Fingers crossed. I can't imagine a time when I don't wake up with this, it feels like I've had it forever, but it's nothing compared to how long some people have suffered with it.

Once again, thanks to this website for at least making me feel human again!

Posts: 19
Reply with quote  #64 
I would like to introduce myself. My name is Teresa and I live in a suburb of Washington, D.C. I am on a quite a few message boards of ICers and it is always great to talk to other people who are going through the same thing. I got IC in 1992 and spent six years bedridden. It took me two years to get a diagnosis (I was told I was crazy, just wanted drugs, you all know the story) and then I tried DMSO which worked for a year. My system became immune to it and nothing else worked. I lost my job of 17 years and went through a horrendous time. I am now on elavil and it has been controlling my symptoms for 6 years. I am down to 5 mg so the side effects are minimal. I have recently started back to work. It has been a long hard journey and I hope that all of us will eventually overcome this horrendous disease.
Teresa Linton

Posts: 62
Reply with quote  #65 
Hi there, my name is Kath Bailey and I am 41 years of age.I was diagnosed with IC about 5 years ago after I was finally refered to see a consultant and had the relevant tests.I have tried a few treatments,DMSO,Cystistat and Botox last year.I take ami. and cimetadine and also a low dose antibiotic to keep any UTI's at bay. I have had times when I get really low and have even considered surgery at my lowest points. I only have mild pain but my worst sympton is constantly feeling like my bladder is full. I have had about 3 bladder stretches in my time and was really hopeful about the botox but unfortunately it hasn't seemed to make any great improvement. My poor husband is such lovely man and even though the condition does affect out love life he is always trying to cheer me up and without him I don't know what I would do. I have spent many hours reading your posts to each other and you all have given me a reason to keep my chin up and cope with the bad times!!
kathry Bailey

Posts: 3
Reply with quote  #66 
My name is Peggy and my 14 year old daughter has just been diagnosed with IC. We just has the procedure done to diagnose and have not really had a chance to talk to the urologist, except when she talked to me right after the procudure on the phone at the outpatient waiting room in the hospital. She just started high-school the week after she found out, and I am not sure if she is truly accepting what she has. She doesn't want to talk about it, and she talks to me about anything and everything, but not this. I've tried to find a suport group for her, but she indicated that she would not feel comfortable with a group not her age, or close, and I haven't found that. I am on the computer it seems most of the day, and feel like I am obsessed in finding all I can about this syndrome. I am so thankful to have found this board. Maybe at some point my daughter will feel like participating and writing down her feelings. Thanks!


Posts: 19
Reply with quote  #67 

Im Julie, nearly 32 from Essex. I've had bladder problems on and off for nearly 3 and a half years. It all started with a bladder infection and then I kept getting them and sometimes they showed infection sometimes they didnt. Then I had about 8 months without any problems at all. Then I started getting general vulvar pain and urinary probs and the tests were coming back as negative. I finally got referred to a urologist nearly 2 years ago. I had an ultrasound and cystoscopy. The ultrasound showed urinary retention but everything else was ok and the cystoscopy showed nothing wrong with bladder but I had 2 biopsies and they showed inflammation and I was told I might have IC.
I was given amitryptline but didnt help and am on cimetidine which seems to be helping me slightly. I tried oxybutynin which made it worse but apart from that havent been on any other meds. Had a cystometrogram done (uroflow, bladder pressure etc). I've had probs with the urologists i've been seeing as they keep telling me different things, one said the results were normal another said they werent. The last appt I had I was told that they could give me cystistat installations and I have to think about it and go back in 6 months!!! Also was told to have a look at treatments on the net!!
Wont go on anymore about it lol

Posts: 76
Reply with quote  #68 

My name is Gina,I`m 45 I live just outside the city of Portsmouth with my husband,two dogs and two cats.I am not really sure what I have wrong with me but have found this site really really helpful.

I am very fortunate compared to some and do not have to put up with relentless pain and I don`t go out to work.I have two beautiful grandaughters to help fill my days and all in all(other than my bladder)I have a good time.
My husband is very supportive and with the extra support I get from the forum I do pretty well.

Posts: 1,474
Reply with quote  #69 
Hi everyone, Im Christine and Im 33 years old. I have a husband and three children. I have had to give up work due to IC, sciatica and kidney stones. I have had IC for 11 years now and at the moment (thank Goodness) have no symptoms but the kidney stones hurt!! Had lots of problems last year trying to cope with my marriage and the illness but things are alot better now. Been away from the message board for a while but pleased to be back! Hope you are all well today! Love Christine xx

Posts: 1
Reply with quote  #70 
Hello. my name is Jessy and im 19 years old. I have had IC since i was 16. Im going to have my second bladder cocktail doen next week. Ive been having a lot of new problems lately. the newest one is that i always have a sensation that im going to pee. my bladder is empty, but i feel like im about to pee myself. Its that feeling that you get after holding it for a long period of time. i go to the bathroom abotu every 5 minutes but i cant pee cause there is nothing there. So im trying to figure out why i feel this way. anyone else have this happen to them?

Posts: 103
Reply with quote  #71 
Hi Everyone,
My name's Sue, I live in Switzerland, I'm 43, married to a lovely, patient man and have two teenage children. I come to this forum from time to time and posted on the old board too. I've had cystitis problems for years but after a terrible flare up in 2001 it's never gone away. I have pain, burning and frequency during flare ups. This board is a godsend to me and I get a lot of good advice, courage and support from your messages. Thanks for being there.

Posts: 2
Reply with quote  #72 
Hi Everyone,

My name's decemmie and I live in London. I'm 31 and have been having UTIs since 18 years old. About 5-6 years ago the symptoms changed from slow onset bacterial infections (which I got every 2-3 months), to very quick onset "flares" with no bacteria; from first noticing that there was a problem, I would then start to find blood in my urine within 3-4 hours. Antibiotics do still seem to help even though there is no bacteria present when my urine is cultured. I used to use trimethoprim, then when that stopped working moved to amoxycillin, now I'm on ciproxin. When I'm having a flare, I also use strong painkillers to keep the burning at bay, and pyridine which I buy in the USA to alleviate the symptoms.

I haven't been free of pain now since about June this year (though it's been better or worse along the way), which has prompted me to try and get control of my treatment. I've had a real problem living in London, moving between areas every year or two, and being registered with group practices that I have hardly seen a single GP more than once or twice. I'm sure it makes it almost impossible for them to treat a patient with recurring problems, but I feel a bit shortchanged that none of them have mentioned IC to me over the years as a possibility!

My main trigger seems to be sex which has caused issues in past relationships (as you probably all know!!!). I'm with someone really special now and I don't just want to cope with it when it happens, I want to do what I can to prevent it. I can't bear the idea that he thinks he's hurting me when we're together and if anyone has any tips on how to handle this I would be so grateful.

I haven't yet been formally diagnosed but have been referred by my GP to see a consultant urologist and would really appreciate if anyone could email me the details of a urologist that they would recommend within reach of London (ideally BUPA registered) who's IC knowledgable. I've already had a renal ultrasound & can bring the results of it along with me, I would rather travel out of London and have to wait for an appointment than see someone who isn't knowledgable about this condition.

I'm so glad I found this board

Love decemmie

Posts: 3
Reply with quote  #73 
Hello my name is Sharon and I am currently seeing a Urologist as we are unsure whether I have Interstitial Cystitis or not. 2 months ago I had a very very bad bought of Cystitis and my GP put me on Antiobiotics. I was on these for just over 1 month. With my immune system shot to pieces and still feeling no better I banged my fist on his table and have been to see a Urologist although I had to do this privately as the wait was 6 months on the NHS!!! I had a ultrascan of my kidneys and bladder and have been told that there is no problem there. My symptoms come and go. I haven't had any symptoms for 1 week now but after sexual intercourse they have come back. My partner is as understanding as he can be but is also getting to the end of his tether. I don't have any symptoms until I have intercouse and then they come back. Is this common with IC? I don't really get much pain. Mainly a period type pain and the feeling of constandtly needing to pee. My Urologist has confimed that I had a very severe infection but as my symptoms come and go he feels this may clear up by itself and I have to see him in two months time. I have been reading the boards and it is really helping to understand what COULD be wrong with me

Thanks x

Posts: 4
Reply with quote  #74 
Hello my name is Julia, Im a young 43 year old , past history of cancer of the womb. Had radiotherapy, it went wrong and had to have a pelvic clearance when I was 26. I suffered badly with radiation cystitis and diaorrhea which got a little better with time.

I then found out when being treated for a hiatal hernia that I had coeliac disease. On top of which I was diagnosed with Osteomalacia. Things didnt get better when the consultant got to the root of my enlarged liver and I was diagnosed with PBC four years ago{Primary Biliary Cirrhosis)not alcohol related etc, its thought to be an autoimmune disease.

But for the last 3 years I have had periods of running to the loo and feeling like I needed to stay there. Pain in my bladder area, pain in the vagina. Ive literally shook with the sensation of pain and burning. I never knew what it was. I have mentioned it to the doctor who knows about my radiation cystitis but said it should have settled long ago. It was as if I was just imagining it to be there. I half wished he could feel the pain and then tell me he imagined it.

Here I am, quite by accident on this site, reading about the same pains etc that I have been feeling for years. I know the right thing to do would be to go to the doctor and say could I have IC but Im afraid my legs wouldnt take me to the front door of the surgery if I thought I would have to be examined down below. Since the radiotherapy I cant abide being touched.

So my question is this.....what can I do to self help and ease the pain I feel? Should I not eat or drink things? Can I purchase something to help it? Any help would be gratefully accepted.



Posts: 53
Reply with quote  #75 
Hi, I am Sam, I live in Cambridge im 24 and have been suffering with bladder problems for the past 5 years.

I feel like I have got absolutly nowhere with doctors shunting me from pillar to post all the time. I still dont have a diagnosis, but from reading alot of posts on this forum, I have come to the conclusion that I may have IC (see my post on the main site). I would love some feedback to that mail please.

Its so good to know there are people out there who have had the same problems... its not so much the medical problem that gets to me, I could deal with that if I thought the doctors were doing their bit, but so far I have been truely failed by them. Hopefully now I have the confidence to stand up to them a bit more and make them listen.

My boyfriend is great about everything, but he finds it hard to deal with me when im upset, so its nice to speak to other women about it, all my friends are healthy and cant really understand either.

Nice to meet you all!
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