diary of an inflamed bladder: 2012

Tuesday 10 July 2012

So here I am after what seems like an age of not blogging! (terrible I know but at least the info is out here for anyone to read if they search for info on IC, which makes me feel a little less guilty).

So whats changed since I last posted? Well...
I have bags more energy, I don't have to keep napping anymore! I actually think I could hold down a full time job now too which was unheard of before.
I have travelled a bit and managed to avoid any flares during that time!
I exercise more.
My diet has changed a bit to include tomato, aubergine and peppers without any problem.
My bladder FEELS normal, most days I am not aware of it at all, theres no sensation of pressure or disomfort.
I've had a coule of flares since I last posted, 2 of which have been in the last 5months, but I've handled them well and I think that my bladder is so much more stable and has been given a chance to heal that I don't actually suffer for too long, also if I do come into contact with any flare foods it is only in the tinyest amount. My flares seem to go like this - I begin feeling dicomfort but like I can't pee, then I have several hours of agony (buring, a swollen feeling you know the drill) and constant peeing and exhaustion along with feeling freezing cold followed by more exhaustion but warmer temperatures and less pain and much less frequency. By day 2 I'm nearly back to normal. Day 3 I'm fine again.

I still take probiotics, I still follow pretty much the same diet (maybe a bit more sugar in it now), I barely ever drink alcohol but if I do I stick to rum (made with sugar cane) and orange juice or wine. I don't use condoms or the pill. I am still using all natural body products. I use Uva Ursi (Vogals brand tincture) if I get a UTI, but its been months since the last time I had to do that.

I am still achieving all of this without the help of a urologist or doctor, I don't take any medical drugs, I've never had a cystoscopy and I remain positive that things can only get better. Having said that I do not rule out the possibility of seeking help from a uro again in the future should my IC symptoms become very much worse and none of the things I have done in the past or continue to do make any improvements.

Thats all from me now folks,

little_ducks xx

What is Interstitial Cystitis?

Interstitial Cystitis is a condition which can be suffered by men, women and children, however most of the recognised sufferers are women.
It is a higly painful and debilitating conditon of which the symptoms are - urgency to urinate, pain and frequency of urination. Often the sufferer will have sudden urges to urinate, or even a constant urge to urinate which does not subside. Pain can be felt before, during or after urination, or all of the time - it can be in the urethra, bladder or in the whole abdominal area and is often compared to burning or pressure. Frequency is also a terrible problem, in some bad cases people can urinate up to around 100 times in a 24hr period. Frequency can make things very difficult at night because the sufferer must get up to go to the loo and this interrupts sleep leaving them exhausted and without any deep sleep (RAM) where people heal and repair.
Some people may have some but not all of the symptoms, other may have all of the symptoms listed and more. Other symptoms can include tiny white floating bits in the urine, suspensions in the urine, dust like sediment in the urine, dark and/or smelly urine (with no infection present), pain which is worse during menstruation/ovulation.
Interstitial Cystitis can often be misdiagnosed or not diagnosed at all...many women go through months or even years of taking course upon course of antibiotics for a urine infection that isn't there. Its very important to get a urine sample sent off by your GP to the lab for further investigation. Children, teenagers and young adults are often told they cannot have IC because they are too young, even when tests and symptoms show that they do, this is down to old fashioned UK regulations around diagnosis of the disease. Men are often told they have prostate problems rather than a bladder problem and this misdiagnosis is very problematic because they cannot attempt to improve their pain with the wrong diagnosis especially when they may never have heard of IC to suspect it for themselves. This is why much more information needs to be put out there for people to understand what they may have and take it from there in the most suitable way for the individual.
To get a diagnosis in the UK a person must undergo invasive tests, including (some uros do only 1 others do all):
cystoscopy (where a camera is inserted into the bladder via the urethra)
biopspy (a sample of the tissue of the bladder lining is taken for investigation)
distension of the bladder (the bladder if filled with fluid whilst the patient is in most cases under general anesthetic, the cytoscope camera then is used to see if there are lesions or tiny hemorrhages in the wall of the bladder as it is stretched by the fluid).
However in America patients are often diagnosed by symptoms alone and treated accordingly.
Many pain treatments are available and often patients are offered anti-depressants as well. Pain treatments can take months to come into play (alot of waiting in pain can occur), or they can mask the issue slightly but not fully. Some people are also prescribed rolling courses of antibiotics. There are also things like bladder and urethral stretches used. But none of these treatments offers a cure they are just ways in which some people have found relief, whilst others have had a worstening of symptoms.