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louloubelle1979

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Posts: 166
Reply with quote  #46 
Hello

Well i have just been discharged from hospital as have had a really bad bout of cystitis. I have suffered from this since i was 16 and am now 24. The doctors are in the progress of trying to find out what is the cause of me having so much cystitis and think i have IC. I would like some feedback as how to deal with this as i have been so ill for the past month, stomach pains,nauseau,fainting and feeling just fed up as it prevents me from leading a normal life

Thanks

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http://www.myspace.com/louloubelle79
hayley_s_e

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Posts: 627
Reply with quote  #47 
Hi everyone.

My Name is Hayley and i am 22 years old.

I live in Derbyshire with my boyfriend of 5 years.

The message board is really great although it is sooo saddening to see how many sufferers there are.

The first time i had cystitis was around the age of 16 - i was soo scared. i had it numerous times following (these were all bacterial) until finally around 2 years ago i was reffered to the hospital where i had scans etc. all showed as normal. i have since had cystitis several times (bacterial) and also had cystitis without any bacteria...is this ic? i constantly have a pain in my Kidney and also leak a little.

Love to hear from you

Thanks for your time

Hayley

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Hayley


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Reply with quote  #48 
Hello. My name is Emma and I'm a 34 year old Occupational Therapist living in Northamptonshire. I have suffered with bladder problems for as long as I can remember. 12 years ago, after a GP who gave me repeated antibiotics, I was referred to a urologist who examined me externally and said he couldn't see anything wrong! He offered me an operation stretch open my tubes but was unable to tell me why this might help so I didn't have it done and he didn't see me again. My doctor suggested taking long-term antibiotics which I stopped taking as they didn't help the pain. My urine samples always came back negative even though my urine was often offensive smelling and bright orange/red. For the last 12 years this ongoing problem has affected my relationships, careers choices, and leisure pursuits. I have been treated many times with antibiotics over the years. I was also diagnosed with endometriosis 12 years ago. If my pain gets very bad I rub cream with a slight antiseptic to it so that helps a bit. I find it difficult to properly explian my symptons or where the pain actually comes from. I have just had another negative urine sample returned. By coincidence I read a magazine today which mentioned this website and that there were different types of cystitis and treatment. I could almost cry with relief and frustration that there may have been a name - ic - for what has affected me so badly for years. I had no idea, no idea at all. I plan to go straight back to my doctor and demand another referral to a urologist. Thank-you sooo much. I feel that there might be some answers for me. Do all urologists understand this condition? Do I have the right to ask if they do?

My best wishes to you all

Emma xx
misty123

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Posts: 4
Reply with quote  #49 

hiya all i am misty i am 39 today,
im new to this and am still trying to come to terms with it .I was diagnosed in april with IC i have been suffering for 4 years in total ,i feel some days its in control of my entire life ,i have to use catheters to empty my bladder i am still wet as well i wear pads constantly that and the pain .Days out are a nightmare i am controlled by were the next toilet is its a living hell.I am now waiting to find out what my doctor is going to do next hes calling next week fingers crossed for some hope.I wish sometimes the doctors could feel the dispair living with IC in reversed role they would then do more ,sorry having a bad day today.
evelyn

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Posts: 549
Reply with quote  #50 
I'm Evelyn aged 44 and am not formally diagnosed with IC but my urologist is running out of ideas - he thought it was an ongoing infection that the lab failed to identify. I don't have pain or urgency, and can go 2 or even 3 hours sometimes without going, but I have this constant strange feeling in my bladder. It started with a UTI in February, and a week later my GP said the infection had gone. I still had symptoms, including a horrendous feeling like someone was sticking a cattleprod up my urethra and burning in the bladder. These have gone now (I am taking ami at night), but I have a sensation almost of nausea and pins and needles in the bladder. It is as if all the nerves around the bladder and urethra are enervated. Sometimes the sensation runs up my body- my acupuncturist calls it 'running pig chi'. No pills seem to touch the sensation. A couple of others seem to be describing this ('creepy feeling' 'niggly feeling')? My GP thinks I'm bonkers. I also take Cystoprotek, drink bladder soothe tea from Neals Yard (mainly marshmallow root) and am about to embark on chinese herbs. I'm having an ultrasound soon (have microscopic blood in urine) then probably a cystoscopy, at which I suspect IC may be diagnosed, but who knows? Has anyone found anything which deals with this sort of problem?
Eric2OO2

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Posts: 1
Reply with quote  #51 
Hello - My name is Eric and I am 19 years old.

All of my life I have always had to urinate frequently, 2-3 times per hour was the norm for me. However about 2-3 months ago I began experiencing severe lower back pain, than followed by bladder pain and pressue. Two doctors and several urine anylasis tests later my doctor has told me that he believes I have some form of cystitis. At first I didn't believe it but now I do !

The pain has been really bad today and if it continues I will be making another appointment with my doctor. It seems to be more severe when I sit compared to standing up or lying down - is this the norm ?

I was placed on antibitotics for a couple of weeks and monitored with a few urine anylasis tests. In all of the tests no bacteria or infection was ever found.

My doctor has since placed me on detrol la to control the frequency of my urination which seems to be helping. I was fine for the past couple of weeks but now the pain is returning which totally sucks!

Edited to add that I also had a ultrasound of my kidneys done and everything came up fine there. The back pain is very rare at this point. Mostly frequent urination and the come and go bladder pain.

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-Eric
olivia6217

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Posts: 2
Reply with quote  #52 
Hello!
I'm a newby and must say I've not actually been diagnosed with IC. I've been in constant pain since January. Made the rounds through colonoscopy, IVP, CT scans, ultrasounds, cyctoscopy (without anesthetic) and 7 specialists of all kinds and still no diagnosis. I discovered IC by accident and "it's me"!!!! I've copied information for my primary care AND urologist. In looking back, I've been having these attacks since the early 80's and have been poo-pooed and a weird menopausal woman for years. Anyway...I'm a 56 yr old grammy of 3 and married to my best friend who cares for me like I was a princess. He doesn't exactly understand my pain but he is very considerate about my need for a bathroom. I'm very glad to have found "y'all"! If anyone knows of a urologist in the Tampa area who actaully knows about IC, I'd love a recommendation.
JacquiP

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Posts: 4
Reply with quote  #53 
Hi,

My name is Jacqui and I am 20 years old.
I live near Chichester in West Susx.

I am working as part time as a Nursery Nurse at the moment in nurseries but am going to Southampton Uni in September to do a Nursing Diploma to do my training to become a Peadeatric Nurse.

I suffer from a condition called Endometriosis and saw my Gynea last week who suspects I have IC on top of endo so am going to be having tests in the near future to see if I definately have endo. I have all the symptoms and it would explain all of the bladder problems I suffer from.

I look forward to meeting you all.

Take care and best wishes,
Jacqui P

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Jacqui P
debzx

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Posts: 116
Reply with quote  #54 
Hi I'm Debz, I live on the wirral, other side of Liverpool!! i am heading to the big 40 next month. I am married 16 years and have 4 kids aged between 20 and 7 Oops!!lol. 3 boys and the babe a girl.

was just recently biopysed and they found IC/Mass cells. I am coming to terms with it and to be honest found the boards well before the diagnoses, so the boards have really helped me. I also have a rt kidney problem which hopefully will be sorted soon.
I am probably the real Neurotic member of COB!! Ha!! but someone has to be!!

debzx
sarah2

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Posts: 62
Reply with quote  #55 
Hi, My name is Sarah and I am a midwife in Leicester.
I have just been diagnosed with IC after 2 years of symptoms. I also have endometriosis.
My main problems at the moment are frequency, feeling like I need to go all the time and pain in my bladder with spasms. I am only taking painkillers at the moment as I am waiting for a uro appointment.
I had never heard of IC until I looked up chronic cystitis on the net, and the asked my gynae consultant who did the cystoscopy if that is what I have and he said I had.
I am trying to get my diet sorted at the moment, but that is quite tricky, but I am persevering.
It is good to read so many other comments as I often feel quite alone and low.
misty123

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Posts: 4
Reply with quote  #56 


HELLO finally got hold of my uro specialist only to be confused some more ,he had me on Cimetadine all that did was give me the runs .I feel like i am being messed about something awful and have no where to turn to. the hosp are now going to re do all the urodynamics again ,I had a cystoscopy and biopsy done and it said that my bladder is severly in IC,then i was given the cimetadine .Now i am told to stop the cimetadine as its not worked.the hosp now say they may have to start me using catheters (I have had to use them for almost a year now they know this as i was passed on to them from two different hosp urologists)I have constant pain the only pain killers i have are what i buy over the counter and they dont touch the pain .I am not sleeping for more than 1 hour at a time i am soooooo tired. my family all want to know when will this IC be fixed I feel like im ignored my GP wont do anything till the hosp tell him my results they wont tell him ,i am going nuts i wish they would all just talk together and help me but i get nowhere. any ideas ???? i really need help .I have another appointment with the hosp on 14th june
THANKS FOR LISTENING SORRY FOR THE MOAN
hayley_s_e

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Posts: 627
Reply with quote  #57 
Hiya,

It sounds like you are in hell at the minute. xx

My pain etc doesnt sound half as severe as yours so i can only imagine what you must be going through right now.

but I too feel as tho i am being messed about and its about time someone listened to us dont you think??

I am seeing my gp on Monday and today i have prepared a two page typed essay on exactly how i feel and what i want to know. im not sure if i will pass this to my gp but it will certainly help me whilst im there. im going to use it as a kind of check list to make sure that i have said everything i want. im not going to leave his office until i have answers to all of my questions.

It makes me soo angry that people like you and me are suffering and no-one really knows how to help (and this is why i think they are so unwilling).

I hope you start to feel better soon and remember you're not moaning you are just stating how you feel. xx we can all help each other

Hayley xx

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Hayley
sarah2

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Posts: 62
Reply with quote  #58 
Hi Lulu,
I also live in Leicester and have just been diagnosed with IC - who are you seeing??
maybe we could email direct.

Sarah2
Hayley

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Posts: 2
Reply with quote  #59 
Gosh, It's taken me ages to 'suss' this out..I used to come on the old ICSG message boards, when I wasn't completely free of symptoms, and have been involved with the ICSG for about 9 years..I've had 'IC' since I was 18..just searing pain, no frequency or urgency, but absolutely horrific non the less..my mum also has the condition, but with slightly different symptoms. I have considered ending it all, been through all kinds of stress and suffering, but 2 babies and a prescription for Elmiron, and I'm completely well..without symptoms..sometimes i find it hard to believe after 18 years I'm better..I have tried every single therapy and drug treatment available..Elmiron doesn't work for everyone, but for everyone there is an answer..there is hope.This is brief, but if anyone wants to know more email at hayleyross@hotmail.com.

Lots of love to Annette and Anthony

Hayleyx

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I've been through the worst, but have seen the light!
evelyn

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Posts: 549
Reply with quote  #60 
Do you think it was the Elmiron or the babies. At 44 I hope I can get the Elmiron but am probably too late for the babies!!
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This Forum is provided by Bladder Health UK and is intended as a place for Sufferers of Interstitial Cystitis, Bacterial Cystitis and Over Active Bladder, together with their family & friends to gather, online in a positive exchange.

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