The COB Foundation

Uroin Plymough or Torquay

Mazzie — Sun, 08 Nov 2009 14:23:49 GMT

|Hi I thought I posted this but now I cant find it ! I am seeing my doc tomorrow at 9.30am and gong to ask for a referral to an NHS Uro in either Torquay or Plymough. I dont know which one to go for and wondered does anyone have a good experince of either hopsitals and Uros?

thanks Mazzie x

Forum: Interstitial Cystitis

Update- light at the end of the tunnel?

Lottie — Sun, 08 Nov 2009 14:01:12 GMT

It's been almost 2 months since my last post on here and a lot has happened so I'll fill you all in...

I have had all of the examinations now; ultrasound, bladder pressure test, cystoscopy etc. and my follow up appointment is on the 24th of this month so hopefully that will shed some light on what exactly is wrong with me. When I had my cystoscopy they found I had a polyp growing near the entrance of my bladder which they think could be stopping my bladder from emptying properly. My bladder was also dark red and had bloody spots and they said had scarring from repeated infection, so no the wonder I have been in agony! They say that I could have an operation to remove this polyp, but I'm not convinced that it is the reason why I have been in so much pain, seeing as I have pain with sex, so could the polyp be causing that too?

An X-Ray showed I have a duplex kidney, it has 2 tubes going into the bladder instead of one. This is the first I have been told of this, despite the fact I have had kidney and bladder problems since birth (I had my other kidney removed when I was a baby.) Things like this really do make me question wether doctors do things thoroughly enough, otherwise why wasn't my parents told this when I was little?

Sex is painful nearly all of the time, last time we had to stop because it felt like a really bad period cramp and was almost like I could feel it hitting my bladder. It really is a nightmare.

It's my birthday today, and I am going out for a meal with my family tonight- I hope this pain doesn't stop me from having a good time. The past few weeks have been unbearable- the pain is unpredictable, it comes on at random intervals and comes in waves and differs in severity.

I've had so much time off college recently because it just disables me and makes me feel so hopeless. I burst into tears in the canteen because I couldn't take it anymore and had to get my parents to pick me up. I feel so alone and so helpless.

Still on codeine for the pain but I'm thinking I might need some amitriptyline because I sometimes feel like I can't go through the day unless I have a codeine.

Hope that wasn't too much of a rant and I'll keep you all updated and let yous know how my follow up goes. Hope you are all well, and stay strong x

Forum: Interstitial Cystitis

Yorquay or Plymouth??? Anyone know??

Mazzie — Sun, 08 Nov 2009 12:19:32 GMT

Hi

I am going to see my doctor tomorrow morning to ask about instillations and I am clear I wont go to Exeter. I have phoned Torquay and Plymouth both do instillations but I want to know what is the best department for IC?? I want a name if possible sop please if you now can you tell me? I am seeing her at 9.30am

many thanks

Mazzie x

Forum: Interstitial Cystitis

cathiterizing need sum info

emmasheppard — Fri, 06 Nov 2009 17:24:36 GMT

w to see c my uro last wed and he decided to do another cytoscopy and put a cathiter in as im currently waking up every 15 mins threw out night,has anyone had one put in ,how did u get on with bathing ,time of month etc,i was refered from walsall to wakefield for the sacrel nerve implant ,i told them i hadto travel on train and on my own the appointment that they could offer me was ten to 6 ,i asked weather id be able to claime the train fare back as im on low income support ,they said it that i wouldnt because i live out of the area and choose to go that far out,i said that i didnt choose i was referred ,i feel as if im being pinalised ,i have ic and overactive bladder im 26 and live on my own and from next week will have acathiter in place but cant get any help with travel or costs, the docs now put me back on the kettra patches and 10 mg vesicar again to try and stable it ,the other thing is going in for my third cytoscopy nxt tues but its the first time there doing it under local,so really worried any advice would be great xxxx

Forum: Overactive Bladder Syndrome

JoThomas WELCOME !

DawnCOB — Fri, 06 Nov 2009 11:36:27 GMT

JO THOMAS WRITES :

This site is music to my ears!

My name is Joline, I have been suffering with my bladder from the age of 11, I am now 32. I have suffered the experience of Dr's not knowing what to do with me for years and last year I finally decided to pay for private treatment.

Unfortunately this only made my situation worse, I ended up having a biopsy which lead to severe infection and a stint of hospitilisation. I have since found out that I have actually been diagnosed with IC!

I finally managed to get my condition under control by changing my eating patterns and religiously drinking fluids. However I am currently battling with another painful stint of IC, which really pulls me down.

I have felt so very alone with the illness and as much as my family understand the severity of my condition, it's very difficult to get friends and colleagues to understand, which puts further pressure on me!

My Dr has recommended going for Homeopathic treatment so I am going to try that as my next step!

If anybody has any recommendations they would be gratefully received.

Best Wishes to Everyone

Joline

Forum: Interstitial Cystitis

Constant pain is taking over my life

BrightEyes83 — Thur, 05 Nov 2009 13:28:28 GMT

Hi my name is Jasmine and I am 26yrs old. I am been suffering from chronic kidney and bladder infections for almost 2yrs now. I am in constant lower abdominal pain, have pain passing urine, feel sick and have lost 3 stone in weight since this started. I have been prescribed so many different antibiotics that I have lost count of how many I have had. I was finally referred 2 Urology at the local hospital and have had several tests including an ultrasound of my kidneys, a flow test and a cystoscopy. All of which came back clear. I have tried a 3month low dose antibiotic which did not help. I was also given a preventive antibiotic to be taken after sexual intercourse as the doctors thought that might be the cause but they dont help either. I have done everything my specialist has told me to do. I drink as much as I possibly can, including cranberry juice. I pass urine frequently even though it causes severe discomfort. My personal hygiene has always been good so I know the problem is not that. I am due to go and see the specialist again in November, intestitial cystitis has been mentioned but no clear diagnosis has ever been made. I have had enough of constant pain, not being able to work because of this and it taking over my life.

Any suggestions would be greatly appreciated.
Thanks

Forum: Interstitial Cystitis

treatments for inflammation

Small — Thur, 05 Nov 2009 12:33:03 GMT

I've been on antibiotics since september after a cystoscopy showed i have inflammation within the bladder wall. I've had the inflammation for nearly 1 year and a half and it just doesn't want to go away.

I don't think the antibiotics are doing a great deal, has anyone had anything similar and are there other treatments out there?

I also take ranitidine as anti-histamines help, but they don't get rid of the inflammation.

My next appointment is in january and I'm just worried that there's little that can be done and I'll be stuck like this!

Forum: Interstitial Cystitis

Turbt procedure

JaneW — Thur, 05 Nov 2009 00:38:04 GMT

Hi,I spent all morning at hospital having a pre-op assessment.I was supposed to be having a cystoscopy this Friday but as I have been ill with heart problems they want me to see the anaesthetist first.My urologist thinks it might be possible for me to have a spinal anaesthetic instead of a general one.
Has anyone had cystoscopy done using a spinal anaesthetic ?
I am going to be having a turbt procedure (Trans urethral resection of bladder tumour).Has anyone else had this procedure ?
During the last cystoscopy the uro found a red patch which he wants to treat this time.He is hoping that it is due to IC but said that because I have the pre-cancerous changes it has to be looked at in more detail in case its cancer.Reading that the Turbt procedure is done for bladder cancer hasn't exactly helped my nerves.
I am so stressed with my mother's health problems as well as my partner's and my own.I don't know either whether I will have to stay in hospital.I shall have to find out because I am not going to leave Mum on her own if I am being admitted.She can hardly walk at the moment and has been in bed much of the time since she came out of hospital last month.Sorry to moan on,its just been a tough few weeks for our family.Love to you all.Jane xxxx

Forum: Interstitial Cystitis

yogurt?

trotters — Wed, 04 Nov 2009 19:34:03 GMT

hello,
just wondering if anyone eats any yogurts and if so which type? would like to start eating them again possibly, and have braved the odd muller light, but would like to take probiotic yogurts and others if possible! thanks xx

Forum: Diet & Nutrition

Advice please - Flexible cystoscopy/Rigid cystoscopy

sueblax — Wed, 04 Nov 2009 13:15:37 GMT

I'm just getting some idea of costs to have some procedures carried out privately and am surprised to have the same amount quoted for a flexible and a rigid cystoscopy. I would have expected 'rigid' to cost a lot more - general anaesthetic and all that.

Can anybody tell me the difference between these two procedures in terms of what can be diagnosed. If 'flexible' is just going to tell me I've got a sore bladder, I know that already and am not sure what else it can tell me! Would it eliminate the possibility of cancer (which I don't think I've got, but there is always that underlying fear). I know you need 'rigid' to detect pinprick bleeding, ulcers etc and do a biopsy.

Advice welcomed, please.

Forum: Interstitial Cystitis

Antitis

KayR — Tue, 03 Nov 2009 20:09:02 GMT

Anyone tried this?? It is a herbal remedy made by Potters.

A friend of mine who has suffered bacterial cystitis on and off for years has started taking it and it has really made a difference.

She gets it on line from Holland and Barrett

Forum: General Topic Forum

urethreal inflammation and dialation

bsc — Tue, 03 Nov 2009 13:02:14 GMT

I have been to the doctors today and after explaining my symptoms, he feels i may have a narrowing of the urethra caused by inflamation (following an ecoli infection - urine is now testing negative). He is referring me to an urologist and said that urethreal dialations can be performed to help.

I am guessing that if he is correct, this means I have what is termed 'urethritis' or 'urethreal' syndrome.

I would be grateful if anyone can offer any information or advice before I see an urologist. My symptoms are a feeling of burning and soreness, towards the base of the urethra. Is this diagnosis really a form of early IC? Has anyone had a similar experience? Are dialations very dangerous/often helpful? IS there anything else i should be thinking of, eg. instead of dialations?

Thank you.

Forum: Bacterial Cystitis

new - is this familiar? need advice

bsc — Mon, 02 Nov 2009 07:50:36 GMT

First, thanks for your time. I could really do with some help.

About 5 weeks ago, i contracted a bacterial infection - with hindsight not surprising - i had just finished anti biotics for unrelated problem, i drank a glass of (now it seems) rather old wine and didn't drink much water and had sexual intercourse. Problem was i had thrush develop at same time (due to previous a/bs) and ended up not having treatment for infection until a week and a half later as initial doctor urine tests showed as negative and doctor put symptoms down to thrush. Howeveer, 2nd sample was sent off and showed e-coli bacteria. I then had a course of trimortheprim but was not right after this and after 4 days of feeling like i might be getting worse on no a/bs, has cefalexin. Still wasn't right so given higher strength cefalexin. No improvement, even though supposedly the right antibiotics. as far as i am aware thrush has cleared up after the usual thrush treatment.

Basically, the symptoms I have remaining seem to be mainly in the urethra, especially at the base. It is like a constant discomfort/pain, a really sort of irritated kind of feeling (and when I wee, it is uncomfortable and burns (though not as bad as a full on infection). I think i feel worse sat down than stood up. Bladder and whole of utherthra does not feel entirely normal either ie. I am constantly aware that i am not right. I have followed IC diet from pretty early on and symptoms seem fairly stable, but still wearing and worrying.

Can anyone explain this? Does it mean I have IC ? (i wouldn't say i have much frequency or urgency).

Could you tell me how you can ever get tested for atypical bacteria - are standard hosipital tests not enough?

How do you find a good urologist? How do you know whether they have enough knowledge on these issues? I will try to be referred privately, but it just seems hopeless in that who knows who you will end up with and whether there is any truth in what they say? After reading other posts, I am also very scared about tests they may offer and whether or not these are helpful or actually very damaging. This feels like a minefield.

I am grateful for any help. Thank you. PS live in south wales.

Forum: Bacterial Cystitis

members pack

bsc — Mon, 02 Nov 2009 07:23:25 GMT

I have LOADS of questions but first - how do I get a members pack. I need information on different types of cystitis. Thank You.

Forum: Interstitial Cystitis

tinned fish - daft question!

Mazzie — Sun, 01 Nov 2009 22:09:28 GMT

Hi I have a couple of cans of salmon and the ingredients state fish and water I have read though that with IC you shouldnt eat canned fish. If it doesnt state suplhites etc can they still be in it?? Anyone know?

thanks

Mazzie x

Forum: Interstitial Cystitis