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Posts: 14
Reply with quote  #1 
I remember being in the throws of bladder illness, just over 1 year ago and desperately searching for success stories. After searching far and wide and mostly seeing horror stories, I saw a post from a lady called Penny, who vowed to tell her success story, once she was 'fixed'. I remember thinking I would do the same once my issues had been resolved (albeit thinking that would never happen). So I will tell my story now to hopefully send positive vibes out and to give hope that bladder illness can be managed / fixed.

My bladder issues started back in 2008, until then I had never had a UTI. I had contracted one after meeting my now husband. I do believe that was a classic case of honeymoon cystitis. Other bouts occurred over the years, including one putting me in hospital for 4 days in 2009. It also seemed to attack on holiday. It was getting to a point where I was scared to go away for fear of this water infection rearing its ugly head. 

The solution was simple, treat with a course of anti-biotics. Drink lots of water, cranberry juice etc. It always co-incidentally struck late at night, after my GP's had closed. So I would have go to the out-of-hours, A&E or if I was out of the area. Note this point well, I will come back to it later.   

The anti-biotics always seemed to do the trick, that was until February 2016 came round and I could feel that dreaded dragging sensation rearing its head. I was also weeing constantly. I went to the out of hours for anti-biotics, because the frequency started at around 9pm. The Dr there said I didn't have UTI, after doing a dipstick test. But handed over broad spectrum anti-biotics, because the likelihood was it would appear over night.

I reported to my GP (registrars), he was puzzled, check if I was pregnant in case it was that. It wasn't. The anti-biotics hadn't worked, despite having 3 days on them. He gave me vesicare and referred me for an ultrasound. At this point I was weeing more than ever, and getting no relief pre- and post- urination. My bladder felt like it was on fire and it was shooting down my urethra.

I returned again to my GP's (another registrar). This one was awful. Not sympathetic at all, which when you are suffering isn't what you need. She was disgusted that I had been given a course of anti-biotics without having a positive dipstick test. And believe it or not that last sample taken at out-of-hours had gone AWOL, so made me out to be a liar. She also accused me of abusing my power as a healthcare professional to seek out anti-biotics, at these various clinics, like I was an addict. But anyone who works in a hospital, knows that you can't approach a consultant and get them to prescribe what you want. It just not done and would be highly unethical, on both parts. I wasn't in a place to stick up for myself as I was SO RUN DOWN and MENTALLY DRAINED.

Anyway, she said that I hadn't had an infection for more than 3 years and her real concern was that I could become resistant to anti-biotics. The only good thing she did was refer me to see a urologist.

I saw a urologist in March 2016, he put me on a waiting list for a cystoscopy and urethral dilation. If anyone wants to message me, regarding this procedure, you are more than welcome, I am happy to answer any questions on it. I had that in April 2016. Although the urologist said he couldn't say whether it would work for me and improve my symptoms, I still went ahead, because the alternative (suffering with chronic pain), wasn't an option.
I'd say the dilation worked AND STILL IS WORKING, it wasn't pleasant. But not as bad as I thought. Once the bruising had gone down and the urethral entrance had healed it was good. I only needed painkillers for 4 days after the procedure. 
Here are a few things I have changed which I think have helped since then and to now, which I believe keep me in remission
-I DONT drink ALCOHOL. Looking back, I see those UTI symptoms were probably bladder irritation from drinking too much on a weekend. I didn't drink anything now, unless its a special occasion and ONLY with PRELIEF. I can oddly tolerate PRESECCO. But before I used to drink lager. That is a no go. Socially it was awkward, but when I told people about the effects and for those who saw me at my worst in Feb-Apr 2016, they could understand. Plus it made me realise I could have a great time without it. Also that maybe I was drinking too much i.e. drinking to get drunk. So it was no wonder my bladder was anger with me. That is another reason why it struck on holiday (I believe now), I was drinking a lot ever night.
-I DONT drink CAFFEINE - this was another product that gave me UTI like symptoms. I'd drink three mugs on a Saturday morning and could still feel the irritation at 10pm. 
-I tried ACUPUNCTURE - the dilation didn't equal cure immediately, it did stop that spasm'y feeling in the urethra, but I was still experiencing bladder pain. I went for 3 months. I think it did improve my symptoms significantly. She was excellent. It could have been mind over matter but for me, I think it worked.
-I'm very careful with PAINKILLERS - at its worst even super strength co-codamol wouldn't kill the pain. That was before the cystoscopy. Since then I have found that if I take painkillers for a little niggle, my bladder will be irritated. I stay away from ibuprofen, this kicked off some urgency. I now take 1 500mg paracetamol and 3mg codeine for illness and that does the trick and has no ill affect on my bladder.
- Bladder Training - All this irritation weakened my bladder, or so I believe. It got to a point where I had to stop at a toilet twice for an 1hr 30 min journey. I'm fine now. I believe that came with time, as the bladder inflammation subsided.
- Cranberry - I take cranberry tablets everyday. I can't say whether this has a good impact. But I stop drinking the juice because I read the sugar could feed bacteria that are responsible for UTI's.
- SEX - when the Feb 2016 episode kicked off, it was after having sex. So for a long while, it scared me, because I associated the two together. Also the dilation caused my urethra to become more sensitive, so when doing the act, it would cause friction, which in turn would cause pain the day after. At the time I invested in some oil based lubricant. This is a non-issue now.
I also now immediately shower following sex, so no bacteria can transfer into my bladder, via the urethra. Before I'd simply wee and wipe. So no wonder bacteria could get in there. I shower after doing no.2 too, (TMI). But again, I do anything to reduce that risk of bacterial infection.
HORMONES - I believe this is a VERY IMPORTANT POINT. Looking back I think a lot of this was due to a hormone imbalance, aswell as excessive alcohol consumption. It was never brought up by the urologist or any GP. But I had come off the pill in august 2015. Had one period in Jan 2016 and then nothing again until June 2016. My body was struggling to regulation natural periods after 11 years on the pill. Also the acupuncturist said the two are interlinked. My urinary symptoms were always worst before coming on a period. Then a couple of days after, when oestrogen is low. Over the summer my periods returned and I fell pregnant in Oct 16. In this period of time, it was like I'd never had a bladder illness.
Unfortunately that resulted in a miscarriage, but even now with my period slowly returning once again, my urinary symptoms have ceased completely.
KNOW WHATS NORMAL FOR YOU - I use dipsticks now and I know that if I have blood in there, it could be from my vagina, when I'm due on a period. And a leucocytes positive dipstick doesn't spell infection, it could be anything - inflammation, body has just fought off an infection and now is dead and being expelled out of your urine.  
That's is about it really.
I hope this does help. Because I remember thinking a year ago, that I would never get better, that I would have this awful problem forever. I don't know if it will come back, hopefully not. Maybe when menopause hits? who knows. But please don't give up hope. Do seek help. Speak to others. The bladder health people were great and I have made one new friend because of it. One which I'd never have met if it wasn't for this awful complaint. Give things a try, don't be scared by horror stories, because what might not work for someone else could be just what you need. We are all different at the end of the day :-)
Be patient, it can be a long road to recovery, but it is worth it in the end.
Please message me, if you want to know anything.

Posts: 5
Reply with quote  #2 
Hi Vicky

Thanks for this message it is definitely the positive vibe I was after, currently bed/toilet ridden (tmi sorry!). I had the rigid cystocopy, bladder stretch and uretha stretch Thursday and have gone down with uti symptoms again but hoping it's just because of that!

I too think alcohol is an irritation for me although I don't drink and awful lot of it anyway. Have also been on the peppermint tea for the last year although I have been having the odd sneaky coffee here and there so that can't help!

Off to the doctors now feeling more positive after reading your post...thanks!

Posts: 5
Reply with quote  #3 
After 40 years of suffering from this stubborn ailment and after seeing a number of  eminent urologists who supposedly knew what they were doing, I have decided to listen to my body and keep a  log. Something advised to me by a specialist nurse at the University College London Hospital (UCLH).Wonderful place!

Yes......and yes........ and yes....... controlling DIET and personal hygiene and  by reducing stress and avoiding fatigue  seem to be of huge help for me. It may not work for everyone but there is  research supporting this view.  There is also a theory about how the lining of the bladder changes after recurrent UTI.   The way I understand from the relevant research, we have to reverse the lining of the bladder so that it is healthy again. Doctors do it by prescribing LONG term antibiotics which make it  worse because  they bring in all sorts of problems e.g. Candida  Or you may  end up, like I did, in A&E for serious digestion problems to the extent that the doctors began to run tests for heart problems. Also, I understand there is  a nerve that goes down the left leg that is connected to the bladder. By doing specific exercises (pelvic floor)  which were given to me by this specialist nurse and by learning to do reflexology and by  listening to all your stories about diet,  I am beginning to think that there might be light at the end of the tunnel. This doesn't mean that we have to avoid  doctors but if we can, try and find a service with  a multidisciplinary team like the UCLH.  



Posts: 14
Reply with quote  #4 
I'm glad you are feeling better about everything charlibear. It will take time. Be patient and yes you are probably right the symptoms are probably after having the procedure.

Do you have IC? Or cystitis?

I was diagnosed with urethral syndrome. There was a possibility of having instills but the urologist said my bladder wasn't inflamed enough.

Keep your chin up. Things will get better xx

Posts: 5
Reply with quote  #5 
Not sure what it is yet, it's not until recently that I have realised how many different types of bladder issues there are in relation to cystitis etc! I would really just love a definitive answer, I go back in 6 months for a flow test(whatever that is!).

It's so difficult isn't it, the pain that you have had to deal with you kind of end up willing to try anything, so it must be frustrating when your doctor says that! 

I'm happy to hear that you are managing it well, it's great to have a positive story for once [smile] x

Posts: 2
Reply with quote  #6 
Hi, thanks for sharing your good positive vibes to us.
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