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_Emma_A_

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Reply with quote  #1 
Hello

I'll try and keep this brief so that I'm not sharing my life story.

From my teenage years I suffered relentlessly with UTIs, Cystitis and Kidney Infections. It felt like I was on antibiotics every few weeks and that my symptoms would flare up out of nowhere. I had so much time off work because of this and spent countless nights unable to move from the bathroom. After a couple of years of this, I was referred to a uro-gynecologist (sp?). I had to keep a record of how much I was drinking vs how much liquid was coming out (not great having to measure your own wee in the middle of the working day) and 'retrain my bladder' to hold larger volumes of liquid and go to the toilet less. If memory serves me correctly, this didn't really help. There were certain things that made a difference like reducing my fluid intake after a certain time but in general I kept getting UTIs. The only suggestion was that I try 6 months of constant antibiotics which I was reluctant to do for obvious reasons (in hindsight maybe this was worth a try).

In my 20s the UTIs etc became less frequent and affected me every several months rather than weeks and I had learned not to drink caffeine, only drink water, not to drink alcohol etc which did help. The symptoms were less severe and the impact on my life was less. I just accepted that I would wake up during the night to urinate and that I had to plan my days/ any outings so that I had regular bathroom breaks. I basically just accepted this as part of my life. I did go to see a doctor with painful UTI symptoms but there was no infection and they advised that it was potentially psychological and that I was now in the habit of going to the bathroom constantly and expecting to wake up in the night. That might be true, but didn't take away from the fact that I was waking up several times in the night and urinating so much more than the average person.

I'm now 30 and for the last year or two I've been really struggling with sleeping through the night because of my bladder, I've also had more occasions where I've had UTI pain/ burning etc with no infection. I went to my current GP about six months ago because I felt like my quality of life was being affected, mainly due to my lack of sleep, and was advised again that I had no infection and perhaps I need to try not drinking water after a certain time to help me sleep through the night.

Last week I went to my GP with a sample because I was sure I had a UTI and again was told there's nothing wrong with me. However, for the first time, they mentioned that I was likely suffering with interstitial cystitis, explained a bit about it, that they don't know a great deal about IC, if it's really affecting my quality of life I can be referred to a uro-gynecologist again but that the chances are they can't do much about it. So it's down to me managing the symptoms when I have a flare up. I feel so stuck. I don't know what it's like to live normally and to wee normally, which sounds so stupid. All of a sudden it's started to really upset me because I've realised I've been living my entire adult life like this, for the last 13 years.

Since researching IC I've realised that a lot of people are affected by this much much worse than I am so I don't want to moan about this too much but I'm looking for any suggestions to help manage this. I've always found that heat helps and I'm lucky to have a job where I can sit with a hot water bottle/ heat pack. I don't drink caffeine, barely drink alcohol and I follow a vegan diet. 

The main things bothering me are;
  • I never sleep through the night, when things are bad I'll wake up 3 times in 7 hours. This obviously means I'm tired a lot and feel like I need more hours in bed to try and get extra sleep around the time I spend going to/ from the bathroom
  • The pain/ burning sensation is constantly uncomfortable
  • I'm scared to plan days out to new places because of being caught short because I need to go so frequently
  • I'm just really frustrated and sad and angry about the whole thing. It sounds silly when I try and explain how this affects my life on a near daily basis when I'm talking to other people, even to doctors
I thought I was being really brief but this looks like an essay [confused]

Does anyone have any suggestions/ advice that might help?




Moderatorsusan

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Reply with quote  #2 

Oh god you poor thing and suffering for so long.

A few points standing out about this.  If it walks like a duck talks like a duck it probably is a duck.  You has UTIs throughout your teenage years going into your 20s when they calmed down.  Were any bacteria ever found or did you start to get negative results?  I'm also assuming loads of 3-5 day courses of low dose antibiotics.  It is now know that bacteria can become established into the cells of the bladder wall evading detection from testing and becoming immune to antibiotic treatment especially if the antibiotic treatment isn't of sufficient dosage.  One of the reasons you could have been retaining, after confirmation of no anatomical issues, was that chronic infection leads to chronic restriction of the urinary tract.  With the symptoms lessening in your 20s it is so clear that the infection was embedded and you were simply learning to live with your symptoms.  

To try to understand this, have a read of this explanation as to how a Chronic UTI develops:

http://www.cutic.co.uk/what-is-chronic-uti/a-chronic-uti-explained/

So what to do.  Firstly you need to see a specialist who can manage these chronic infections - it's frankly appalling that a doctor has suggested your symptoms are psychosomatic - but you are not alone - many in this forum have had this label applied to them.  If nothing else a specialist can also assess for possible IC and overactive bladder but given your long history of infections, its likely the infection has affected the nerves in your bladder and the inflammation and frequency needs to be bought under control along with the infection.  Also your pelvic floor will be in spasm from the years of infection and pain, these will impact on the nerves and cause yet more irritation and sensation of needing to urinate.  Also you may want to think about counselling, you have handled this for so long on your own, that reaching out for some third party help may make a difference.

You don't mention any other pelvic issues or hormonal problems but a specialist can at least check to make sure there isn't a polyp, cyst or growth pressing on the bladder.  

You are doing all the right things in controlling triggers so diet, comfort etc.  What you cannot control obviously is flare ups where bacteria emerge from the bladder wall and cause acute UTI symptoms.  Try an antihistamine to help with the pain and the burning.  Also a urinary pain killer such as Azo standard which can be bought online.  Be warned it turns your pee an alarming shade of orange but has helped many with acute flare ups.  Loose clothing, no tight jeans, no bubble bath, use towels rather than tampons to avoid putting pressure on your bladder, cotton underwear - all simple changes but can help.

BHUK can help with lots of info, give them a call in the morning.  Their advice line is fab and they understand this and speak to people of all ages.  You are not alone with this.  You have options and they can help with making a plan and offering support and specialist suggestions.  This has gone on far too long now and you need to be properly managed. Sadly GPs are ignorant about the issue of chronic infections having only guidelines to manage acute ones but word is out and there are doctors who can help.  It may take time and it may be bumpy but as long as you explore your options and seek the right treatment as well as doing all you can to help yourself (and roping in family and friends to help support you - that's key.

_Emma_A_

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Reply with quote  #3 
Thank you so much, that's even more food for thought!

With regards to the bacteria in my teens/20s there was usually bacteria found but then after awhile I could go in and say "I have a UTI" and on a few occasions I could get antibiotics without a test being done, also got given prescriptions to keep for future use if I I felt a UTI coming on. This now doesn't seem like best practice to me but you don't think to question your doctor and assume they know what's best. At first, I had the 3-5 day antibiotics but not surprisingly they stopped working and I started getting a 7 day course of a stronger dose. I can't remember exactly which ones because it's all a blur to me but I know I was taking a higher than usual offered dose. It's over the last 3-4 years where there have been negative results I believe.

I'm assuming my GP can refer me to a specialist if I request, or is this something I need to look into? I feel like I'm constantly being expected to shut up and put up and that I'm wasting my GPs time. I'm also debating requesting my medical history so that I can get an overview from that because, like I said, so much of this is just a blur now.

Thank you so much for all the suggestions.
Moderatorsusan

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Reply with quote  #4 
I would call the BHUK office as there are specific specialists who deal with recurrent UTI and the symptoms you have. These specialists use different methods of culture and analysis to that currently use by standard specialists. Some can be seen with a GP referral and others need a secondary consultant referral. The office can give you more info.

And your story of antibiotics over 3-5 days then longer courses and then not working is very very familiar I’m afraid. As the bacteria embed into the bladder wall they can evade the antibiotic attacks and given their natural resistance genes can build up a tolerance to low dose antibiotics.

Babz

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Reply with quote  #5 
What is the phone number for Bladder uk please
Thx

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Barbara Shervell
ModeratorKate

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Reply with quote  #6 
Hi Babz
 It is at the top of homepage and each category page.

But here it is for you,do remember to leave your contact details and some one WILL get back to you.As we are a small charity we may not be able to answer you personally each time.

0121-702-0820

Hope that's a help.



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Babz

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Reply with quote  #7 
Thank you so much
Babz is that an English helpline number

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Barbara Shervell
ModeratorKate

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Reply with quote  #8 
Hi Babz
You ask  "  is that an English helpline number "   ..Yes it is.

Here is our website which has more info to help you,also click the various headings there is a lot more info as well


http://bladderhealthuk.org/contact-us


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This Forum is provided by Bladder Health UK and is intended as a place for Sufferers of Interstitial Cystitis, Bacterial Cystitis and Over Active Bladder, together with their family & friends to gather, online in a positive exchange.

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