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Lau212015

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Posts: 7
Reply with quote  #1 
Hi everyone ,
I’ve booked to see the professor in July but have some concerns.
I don’t see many success stories and am worried that a lot of people seem to just be on antibiotics. I have flares and remissions anyway , so would be very hard to tell the difference during treatment.
I just need some hope. I’m driving myself mad here just thinking the worse.
I’m so worried I’ll go and he can’t treat me too then I’ll be left like this. I’ve been pushing everyone away.
I was due to get married this year but I’ve totally shut down.
There just doesn’t seem to be any effective treatments if indeed it is ic and not infection.
I just need some light at the end of the tunnel!
Sorry to sound so pessimistic.
Thanks again,
Laura.
Moderatorsusan

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Reply with quote  #2 
Laura

I’ve sent you a pm with some info.

Try not to catastrophize. Many have said exactly what you have felt before seeing Prof as they simply couldn’t believe that he would diagnose anything and they would be dismissed again. He is very honest with patients and will genuinely tell you if on analysis of your urine sample along with your symptoms whether you have an infection or not. If its not an infection he will advise what you should do and the BHUK office can help with treatment routes. If it is an infection then he will talk to you about his treatment methods and it’s up to you then to decide if you want to start treatment.

In terms of treatment for a chronic UTI, the recovery pathway (a progression of the disease) is classically through a series of flares which come and go. When in treatment, each successive flare is hoped to be progressively milder and it may be noticed over months that a symptom is missing each time a flare occurs (there may be less pain and the flow will be better but the urgency and frequency will stay and then they will slowly go and the last symptom may be, say, burning, or itching inside the urethra). If not in treatment, the same ups and downs would be experienced, but possibly each time a flare occurred it would feel worse as it progressed rather than slowly receding. It is thought that the reason it comes and goes with “break through flares” is because the bacteria are released when the bladder sheds the outer layer of its lining and “spits them out” from inside the bladder wall cells. This can be through natural cyclical shedding as well as provoking the bladder wall though sex, exercise or eating inflammatory foods. The bacteria are released into the bladder becoming planktonic (active) and the immune system goes on alert and causes the “flare” people experience. Additionally, bacteria release toxins as they die causing more inflammation.

In treatment but feeling worse or no different after a few weeks/months: Put simply, it’s a question of managing expectations of the recovery pathway timescales. Treatment for a chronic UTI is not an overnight resolution especially for those who have experienced symptoms for a long period and is often due to:

Bacteria and symptoms – whilst the bacterium identified through culture, if using this diagnostic route, may be susceptible to the medication prescribed and be reduced, often another bacterium occupies the space vacated. Symptoms within the urinary tract can change depending on the specific bacteria and location and over reliance on testing can ignore the change in symptoms. Patients should always explain new symptoms to their specialist

An embedded infection is just that, embedded into the bladder wall so will take time for the cells to shed or release into urine where the antibiotics/antimicrobials can target them.

Other contributing factors such as hormones, thyroid, autoimmune conditions, gut health or other co-morbidities which will weaken the immune system. Some of these will have to be investigated and treated to benefit overall body health.

Pelvic floor issues causing additional regional pain.

Any medication resistances someone may have. Bacteria are unbelievably adaptive at resisting and mutating and several changes of treatment may be required.

The inflammatory effects of infection in the bladder and body can often take a lot longer to resolve than the infection.

Lau212015

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Posts: 7
Reply with quote  #3 
Thank you so much for getting back to me Susan. I appreciate it more than you know.
Just been going through a tough time with it and broke down at the doctors today.
Can I just ask then if the bacteria become free flowing when in a flare why don’t they show up on urine tests?
Also, I have tried the diet many times but I just can’t find a trigger. I’ve eaten normally for the last 7 months and nothing sets this off apart from sex!
Thanks again for being so supportive x
Moderatorsusan

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Posts: 1,048
Reply with quote  #4 
Not a problem happy to help. The sex then is the trigger and you may need to look at your method of contraception, hygiene and post sex hygiene. I assume you have read Angela Kilmartin’s excellent book about cystitis. Lots of life style info in there to help. Prof will also tell you to eat and drink normally although you probably will want to take a probiotic if you start treatment to help repopulate the gut with good bacteria.

Where to start with the testing. Put simply it’s completely flawed and 60 years out of date.

At present, there is too much reliance in primary and secondary care on outdated testing using dipsticks or laboratory analysis. Less than 1% of known microbes will grow in traditional urine culture methods. BHUK are campaigning for better testing as currently up to 50% of infections are missed and yet the GP is powerless because if computer says no then they cannot prescribe appropriately.

Finally you may be interested in Prof’s latest research which is based on a 10 year patient study involving 624 women. In total 62% felt better with a further 20% very much better. Link below


https://link.springer.com/article/10.1007/s00192-018-3569-7


Lau212015

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Posts: 7
Reply with quote  #5 
Thanks once again Susan.
I’ve just read that the prof thinks that all ic is bacterial in origin?
So what would you recommend regarding the diet. I’ve seen so many different ones too such as gluten free, dairy free, low histamine- it really is a mine field and to top it allI just cannot find a link!
Also, do you think I should have a broth test too? I just don’t know what to do for the best. The pain is making me panic and I’m just worried that the disease has progressed and I’m stuck !
I’m usually such an upbeat person but I feel like I’ve lost all of my positivity at the moment.
I am currently taking amitriptyline, Hydroxyzine and mirabegron but have only started taking these in the last two weeks so I know I might not see an improvement yet.
I have Angela’s book too and religiously stick to her bottle washing routine!
I just think, at the end of the day I would feel better if I knew my symptoms could at least be controlled.
I know I’m luckier than some because I’ve had ic for nine years which started with a uti but I have remission in between flares when I go back to normal life,so I keep telling myself that it will be the same again but the other side of me panics and I think what if this is it now. I have taken this flare really badly. Also due back at work next week and am worried about that too.
Anyway, the success stories really cheered me up so thanks for that.
Laura x
Moderatorsusan

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Posts: 1,048
Reply with quote  #6 
Before you start overthinking things, have your first appointment with Prof and take it from there.  Prof is aware that for some of his patients, food and drink affects them and by modifying their diets it has helped but for others it makes no difference at all and they eat and drink what they want.  Remember we are all wonky in our way so you have to do what works for you - not a universal dictat.

Take it one step at a time.  See how things progress on his treatment regime if you decide to follow it and then you can start thinking about any other changes you may (and its only may) want to make.  The temptation is to change everything at once, overwhelming your body.

Baby steps, always baby steps.  We all want symptom control but its sometimes a bit of a journey to get here.

Have you thought about a mindfulness app or a short course of counselling to help with the anxiety?  Lots have found it to be helpful just to be able to talk with someone rather than bottling it up.  Family can help but more often you need a fresh pair of eyes and someone used to helping those with lots of anxiety.  Have a chat with your GP.  Mindfulness apps help with breathing and control and need only take 10 mins a day either on the way to work, or after work.

Find something you love as well and focus on that.  Doesn't have to be much but a small project or passion helps to reduce the overthinking and gives you a focus.






tigger11

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Posts: 13
Reply with quote  #7 
Just to let you know I am one of the Prof's success stories so please don't give up hope.  I started having uti's in 2003 following surgery and was in a very bad way when I eventually saw the Prof in September 2016.  It has taken nearly 19 months and several flares along the way but he is always accessible to help treat these, and last week my cell count was at last normal so I can give up antibiotics.  So far as food and drink are concerned I had been unable to tolerate a number of things by the time I first saw him, but this changed gradually during my treatment period and I am now able to eat and drink almost anything.  It is very important to take lots of different probiotics if you are on long term antibiotics and I sought advice from a nutritionist.  I feel a very different person to the one in 2016, I have my life back.  I am sure he will be able to help you, good luck
Lau212015

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Posts: 7
Reply with quote  #8 
Thanks so much tigger11.
Nice to hear of a success story ! Glad you’re feeling well again. Keep me posted with your continued progress x
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