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Sel

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Posts: 162
Reply with quote  #151 
Ashley,

Poor you! That's simply horrible. Let us know what your specialist  says. It think it might be easier if you start your own thread (if you already have, sorry, then I must have missed it).

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Suffers from IC, BC and overactive bladder.
ModeratorKate

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Posts: 1,651
Reply with quote  #152 
Hello Ashley
I do apologise for delay in replying, sometimes we miss an entry, when it gets mixed in.As Sel suggested it is sometimes more beneficial to getting a reply, when you start  your own thread.

I wonder how you are feeling now,? have you been able to speak to your consultant? We would be very interested in his comments and of course this will help anyone else searching a similar symptom.

We are a Uk based Forum and I wonder if you have contacted this Group who are nearer to you.

Interstitial Cystitis Network ICN (National)
4983 Sonoma Highway, Suite L
Santa Rose, CA 95409, USA
Tel: 1-707-538.9442
http://www.ic-network.com 
jill@ic-network.com

Also do take part in the Survey, and if you want to join COB, then am sure you will find a lot more helpful information and advice.
Another place to read more info is over on the COB Website.

Kind regards
Kate


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littlewutze

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Posts: 6
Reply with quote  #153 
Hi Everyone,
My name is Layla and I have suffered from chronic 'honeymoon' cystitis every time I was in a long-term relationship. At the start of this year I entered a new relationship and started to suffer from cystitis straight away and it continued coming back, threatening to destroy my new relationship! 

But then I found the work of Angela Kilmartin, especially her encyclopedia on cystitis. Since I have used her methods I am cystitis free. I just signed in to spread the word, I think this is a MUST read for every woman suffering from any kind of cystitis! I was shocked how little every GP seemed to know on this matter, apart from suggesting the usual (cranberry juice, antibiotics)- which in my case only made matters worse.

Please, do yourself a favor and read the book -it will help you more than most doctors will....

Since my initial infections I've been left with frequent bladder pains, burning and irritation of the genital area. Any tests I did at the doctors were negative. Through research I'm finally convinced that I have a candida infection, either in my bladder and/or bowel - caused by the pill and frequent intake of antibiotics plus eating more junk food. Again, this is not recognized as a condition by most gps as it is difficult to proof (though there is scientific research to back the theory). I am now on a strict self-help program including a strict diet, supplements and anti-fungals and though the symptoms haven't disappeared yet I do feel slightly better. I am determined to continue with the program and to get better. 

This is taking over my life and I would love to talk to anyone who's gone through something similar.
If anyone has similar symptoms and no answers from conventional doctors it might be worth looking into Candida yeast infections. Please do get in touch, I feel very alone with this!



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Everyone can be healthy! My story @ http://www.realfoodrealhealth.co.uk
Flemma

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Posts: 2
Reply with quote  #154 
Hello everyone,
My name is Emma I'm 36 from Somerset uk,
Since January 2013 I have been suffering with lower back pain, I was given zapain and sent home. BY April and still in agony I was sent to local hospital for some physio.
At this time I was also severely constipated from all the codeine, but without the codeine I couldn't work. I was straining a lot on the toilet and I could feel I was pushing down on my bladder.. ( was this the start of the problem)
In May I had all the symptoms of a UTI, urgency to pee, pain in bladder and pressure in my bladder, went for a urine test and all clear except they found a bit of blood and protein . I was given a 3 day trimethoprim course. It settled the symptoms down but within 2 days the pain and urgency came back only worse.
The urgency to pee is constant, and very painful in my bladder, it has never hurt to actually pee. I had another test done and again no infection. I was given a 7 day course of same antibiotic , again symptoms died down, but did not disappear. This happened again for a 3rd time in 17 days so I went back to docs again.
I had swabs, blood, urine and ultra sound scan, and Nothing was showing as wrong.
Doctor told me I have IC gave me some Ditropan and sent me home.
In August whilst I'm still in agony, it's ruining my life and I felt suicidal somedays, I went to docs again and saw a different doc. She referred me to an Urologist, who I saw last Friday. She told me she found lots of white cells in my urine which are used to fight an infection, they tested it under a microscope and found I had E. coli in my bladder. She tested the strain and I had a positive result that Trimethoprim would work to fight and infection that still wasn't showing on any test.
She put me on a 2 week course of Trimethoprim and then I have to take I every night for 6 months.
I'm so worried this is not going to work, I drink cranberry juice every day plus lots of water. I'm living on paracetamol, as back is agony, don't know now if back pain is from very first complaint or bad because of infection.
I take ditropan for bladder spasms and Naprosyn is an anti inflamatory for my back. I'm fed up with popping pills.

Been on trimethoprim now for 10 days, and although symptoms are better and I'm not waking 15-20 times a night for a wee, my bladder still hurts after a wee, sitting in a car is agony and I get the urge to wee. When this all began back in May, i had only ever had 2 UTI's, so not common for me, and I only had the urge to pee when I lied down, very strange.
Also I get a very weird feeling in my uretha, I can't say its a pain, more like an ache.
Please any advice would be very grateful I've been suffering now for 5 months, it's depressing me big time. Has anyone else had a similar experience and came out the other end with a good result. Xx
I hope all the stories I've read on here tonight get some help as I know how bad this problem makes you feel. Take care all and thanks for reading. Xx
littlewutze

Registered:
Posts: 6
Reply with quote  #155 
Hi Emma,
I don't know if you read my previous post but you should have a look at the work of Angela Kilmartin, she is THE expert on anything to do with cystitis and can probably help you more than anyone else. Since I've read her books I am cystitis free, she saved my life.
She will answer questions online and even do counselling in special cases: http://www.angelakilmartin.com/

I wouldn't advertise it if I wasn't 100 % convinced of her.

Good luck!

__________________
Everyone can be healthy! My story @ http://www.realfoodrealhealth.co.uk
Flemma

Registered:
Posts: 2
Reply with quote  #156 
Hi Layla,
Yes I did read your comment and I've already made a note of her name. I have a day off tomorrow so will try and get hold of her book. I seriously will try anything. It's driving me insane. So happy for you though. It gives me hope. Xx
saffron7

Registered:
Posts: 6
Reply with quote  #157 
Quote:
Originally Posted by littlewutze
Hi Everyone,
My name is Layla and I have suffered from chronic 'honeymoon' cystitis every time I was in a long-term relationship. At the start of this year I entered a new relationship and started to suffer from cystitis straight away and it continued coming back, threatening to destroy my new relationship! 

But then I found the work of Angela Kilmartin, especially her encyclopedia on cystitis. Since I have used her methods I am cystitis free. I just signed in to spread the word, I think this is a MUST read for every woman suffering from any kind of cystitis! I was shocked how little every GP seemed to know on this matter, apart from suggesting the usual (cranberry juice, antibiotics)- which in my case only made matters worse.

Please, do yourself a favor and read the book -it will help you more than most doctors will....

Since my initial infections I've been left with frequent bladder pains, burning and irritation of the genital area. Any tests I did at the doctors were negative. Through research I'm finally convinced that I have a candida infection, either in my bladder and/or bowel - caused by the pill and frequent intake of antibiotics plus eating more junk food. Again, this is not recognized as a condition by most gps as it is difficult to proof (though there is scientific research to back the theory). I am now on a strict self-help program including a strict diet, supplements and anti-fungals and though the symptoms haven't disappeared yet I do feel slightly better. I am determined to continue with the program and to get better. 

This is taking over my life and I would love to talk to anyone who's gone through something similar.
If anyone has similar symptoms and no answers from conventional doctors it might be worth looking into Candida yeast infections. Please do get in touch, I feel very alone with this!


saffron7

Registered:
Posts: 6
Reply with quote  #158 
Hi Layla,

I read with interest your post regarding "Chronic Honeymoon Cystitis" and am glad to hear you now have this under control, I will look up the work of Angela Kilmartin.

I have Interstitial Cystitis since the age of 19 years, it started with Cystitis and after years of Antibiotics and Antidepressants, I got diagnosed aged 29 by Cystoscopy at Hospital and they found the hall mark Hunner's Ulcers and White Mast cells in the bladder.
  • 1) I have been on Amitriptyline, Cimetadene, Atarax, and Elmiron.  No difference made. [frown]
  • 2) I have had bladder instillations in hospital, firstly every week for 6 weeks then every month for one year.   A slight improvement in Pain and frequency.
  • 3) I have had 4 Hydrodystensions under anaesthetic in hospital (stretch a scarred inflamed bladder with water!) less frequency to urinate. (really painful had to leave university due to pain and was also on antidepressants and found it hard to concentrate.)
I have found that none of these treatments work for me (every body is different)
What I have found through lots of personal research is that my body is riddled with an overgrowth of CANDIDA and you are right the conventional doctors won't and aren't trained to recognise or treat this.

I am having some  success with Cystitis and Interstitial Cystitis right now  by following :- A STRICT YEAST FREE DIET,  with supplements to turn the yeast from fungal form back to yeast form, lots of filtered water and a sauna every day (i bought one off the internet for £60 it's a infra red one ).  

I would like to talk either by instant messaging or by e-mail regarding this as I think we are onto something! 

Best Wishes Saffron 7[biggrin]
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