diary of an inflamed bladder: a few things...

Sunday 24 April 2011

a few things...

Dear All,

I have a few things I want to put out there quickly this morning...some I have been requested to discuss others I felt I should discuss, so here goes:

Water I cannot stress enough how important it is to get 2litres of water a day. And more importantly bottled or filtered tap water are the best, especially if you live in an area where the water is full of chemicals (say London for example - thats where I am). I filter most of my water and have a small amount of bottled water. When searching for a bottled water the pH is a good way of deciding whether that water will suit you. A pH of 7 or higher is better than say a 5 or 6.

Contraception When I stopped using condoms because they were aggravating my urethra and bladder I had a copper coil fitted, this did not suit me one bit, it was in for 6months and I was having terrible abdominal pain and monthly vaginal thrush, I was told I had PID without any proper tests, given a ton of antibiotics but later my gynaecologist told me I didn't have PID and found everything to be fine on the internal scan. However I felt that the problems hadn't been there until my coil was fitted, so I asked to have it removed - the nasty thing had been corroding inside me and the gynae was shocked at how corroded it looked. After that I started using the pill Yasmin, however this did not suit me either, I was losing weight unable to put any on, I was miserable, I felt weak, disinterested in life etc etc etc. Some people say that hormonal contraception promotes yeast problems, regardless of whether this is true I had never really wanted to go on the pill I always felt wary of messing about with hormones, I started taking it as a last resort. After 2 months I was feeling dreadful and my bladder was playing up badly just before my period so I decided to come off it. I later found out that that particular pill was also a diuretic - no good if you have a bladder problem.
I have not attempted to use any other pills (before major problems I tried Marvellon but it made me blow up like a balloon and I was nauseous most of the time), nor have I found a brand of condom which suits me, for a little while latex free trojan were ok as long as I used plenty of coconut oil as a lubricant but I started reacting to them as well. I am now using the withdrawal method and starting to research the rhythm method. Many reading this will think it is madness which is exactly what I would have thought before this experience. But I am trying the best I can to manage on what I've got, its been 2 months and so far all is well. I really have tried so many things and for a time my boyfriend said he wouldn't mind not having sex at all because of all the pain from the condoms and my reaction to the pill etc but I love him and I want that important part of our relationship to be possible. I know the risks and I know that if I did get pregnant then I wouldn't want to have an abortion even though at this stage in my life it wouldn't be ideal to become a mum. However much research shows that the withdrawal method if performed correctly is only 2% less effective than condoms. This is a risk I am willing to take.

And finally...
I am going to see a female physio, they are usually for people who have just had babies or have incontinence (I've had neither), but I have worked out recently since I've been feeling better that when my pelvic floor muscles are too tight then my bladder starts to hurt, often after strenuous exercise or during a stressful situation. Actively relaxing the muscles helps but I am hoping that the physio will be able to get to the bottom of the situation and perhaps give me exercises/treatment which will reverse this issue/help ease it off. I am really excited about this because I think it could make a world of a difference.

I have alot more to say and will probably make a post soon about the story behind my bladder problems so a better perspective on where I have come from and where I'm at now, how I got there etc can be achieved.

I'm trying to sort out how to make it so that people can email me also, as I think that might be good for a bit of two way communication. I had a lovely comment on my last post from someone (I think in America) who I'd love to personally email a reply to, so I'm gonna look into that and see if theres a tool.

love
little_ducks x

1 comment:

amberaliceSunday, April 24, 2011 2:14:00 pm
Hello there, I found this blog as you had linked it from COB forums :) I'm about your age (just turned 22) and have found many of the things you found helpful to help me too! If I eat tomatoes I notice an instant flare...likewise if use any perfumed/chemical filled body products. I've got a couple of email pals our age as well which I found has helped greatly, especially in times of need!
Thanks for sharing your experiences, I have one question, do you still avoid going places where there isn't a toilet? Even when I'm going through a good period this really fills me with dread!
Feel free to email me, I love knowing I'm not the only one at our age with these problems!
amberalice@hotmail.co.uk

xxx
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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.