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Posts: 76
Reply with quote  #1 
Hi everyone - I feel I'm a bit if a difficult spot and wondered if anyone had any thoughts or support. I just don't know what to do. Apologies for the long story message!

I started seeing the Prof in 2011. After quite a few attempts at different AB combinations we found one that seemed to work on the infection and partially alleviate symptoms to a bearable level - this was three or four Nitrofurantoin and one Azithromycin a day. Now that is quite a lot and it always worried me taking so much for a few reasons. I know in Prof's materials it says on average patients are on the AB regime for about a year, but I was on it for six plus and still struggling with symptoms sometimes.

I had a baby in April. The doctor made me stop the ABs during labour. I was very ill in labour (pre-eclampsia, sepsis, postpartum haemorrhage) and had other ABs IV for a week. Miraculously I was symptom free after this despite coming off the Prof's AB regime. I hear this can happen after labour. 

But I just had a positive urine infection result (E. coli) (one of the first actual positive results!) possibly brought on by a D&C I had a month ago (June). At the time of the result I had no symptoms (why???). I went on a standard week-long AB course just in case and only once the infection cleared did all the horrible symptoms come back. Now Im back in a world of pain again. 

Anyway I have ended up temporarily living overseas so I can't see Prof now. This has caused me a lot of worry, but there's nothing I can do about it right now. I have found a urologist here who is supportive and once I gave her Prof's document on his theory and approach she did come around and thought there may well be something in it. I'm seeing her this week and don't know if I should just go on the heavy AB regime again or treat it as if from scratch and try some of the treatments typically prescribed for IC (which is what this urologist initially talked about) including Elmiron. 

I feel very lost again. Any thoughts on the above would help. Or any knowledge of Prof's patients being on the AB regime for so many years like me?

Thank you for reading!

Posts: 1,131
Reply with quote  #2 
Firstly many congrats on the birth of your little one - you must be thrilled.

I'll try to answer the questions as best I can.

  1. On average, yes most of Prof's patients do resolve their symptoms in just over a year. However this does not guarantee that they won't get another UTI again in their lifetime.  Its like saying you will never get a cold again, you will.  He does have a cohort of patients who take a lot longer to manage including some that are up to 10 years upwards in treatment so you are not alone by a long way in terms of treatment length.  Now this can be down to a number of factors - they have other health issues that have weakened their immune system, they have indwelling catheters etc that predispose them to continuous infections, they can stop the antibiotics for a period of time and then symptoms come back, or they have struggled with chronic infections for such a long period of time before they got to Prof thus the infection is deeply embedded into the bladder wall and each time they flare it releases the bacteria and thus ab cover is needed.  One of the big difficulties is that everyone is so different and as he says in the link below to the paper he has written about how a chronic UTI develops, he has to wait for the immune system to help in the response to the infection. 
  2. I'm not sure if you are aware but Prof treats patients from all over the world so you can, if you are able to, continue to be under his care although it would be as a private patient if you are outside of the UK for a period of time.  He works with GPs and specialists across the globe in helping patients and can liaise with her in terms of your care if you so wish.  You could ask your specialist to contact him and I'm sure he would be happy to have a chat about you so she has a full background and an understanding of his treatment protocols. 
  3. Remember with these infections that not just one bacteria is involved.  Tests are based on the fastest growing bacteria in the lab of which E-coli is the most common one.  So for example when you were treated for your e-coli infection and symptoms came back it could be that another bacteria had simply established dominance in your bladder which was not responsive to the ab prescribed. It will also depend on the strength of antibiotic prescribed, if low dose then it won't knock the infection back and could worsen things.  If you are in pain, then give it 7 days for the abs to clear out of your system and ask to be retested. Ensure that the sample is as concentrated as possible and then review the results with your specialist.  Otherwise D Mannose is good for e-coli infections. A teaspoon every 2 hours for 72 hours and that includes at night and then drop down to 6-8 teaspoons a day.
  4. I'd also get checked to make sure you have not got a nasty case of vaginal thrush following the D&C and birth.  The vaginal flora will alter and in the summer heat, thrush can bubble up.  Perhaps your specialist can do a swab to check for vaginal fungal and bacteria infections.  Make sure as well that your pelvic floor is being cared for too.  Your specialist should hopefully be able to refer you to a pelvic floor physio.
  5. In terms of what to do next, well only really you can answer that.  Given that you have felt fine post partum and have had a heavy antibiotic load for several years then you may want to avoid this route. Remember your immune system has taken an utter battering during labour so you may need to focus on building up your strength particularly with late night feeds and the general stress of a new baby. Can your partner's family help at all to ensure you eat well and can get as much rest as possible.  
  6. Does your specialist have the results of any of your investigations back in the UK such as cystoscopy etc?  I'd always discuss with a specialist proposing treatments what their success rate is and ask realistically whether you would need to be on medication or treatment for a long period of time. Sadly there is at the moment no magic bullet with all of this. I'm not sure if you are breastfeeding at the mo but obviously treatment would need to take that into account.
  7. In terms of IC, diagnosis is very difficult. One urologist I have spoken to sees around 4-5 cases of true IC each year - Hunners Ulceration etc and this is from a patient cohort of many hundreds both privately and through the NHS.  Others have chronic undiagnosed infection, severe mast cell issues, OAB, pelvic floor issues, gynaecological issues affecting the bladder and as with the Professor other health issues that impact their bladder making them prone to recurrent and then continuous infection.
  8. Research if there are IC organisations in the country where you are now living and have a chat with them.  I'm sure they can offer support and advice.  Make sure if you are able to that you do plenty of research.  This forum can help for people's personal experiences and you can search very easily.  Always remember that everyone is different so there is simply not one size that fits all.  You do what works for you.

Wishing you well.


Posts: 76
Reply with quote  #3 
Thank you so much for your detailed answers, really appreciate it. Just a few questions from your comments. Thanks again. 

2. How would I contact Prof privately if I wanted to do that in the future? I assume by contacting the Bladder UK office for contact details?
My urologist here was interested in contacting the Prof's clinic, but never got around to it! 

3. I've got Now D Mannose 500mg capsules so I would instead take one capsule every two hours and this wouldn't be 'overdosing'. But from what you say I get the impression it won't work on all bacteria so is there a chance it won't work? 

4. I do have thrush! I'm going to treat that with fluconazole after this one week AB course.
I was seeing a pelvic floor physio before I had my baby and will see her again when I get the all clear postpartum - I was bleeding a lot as still had a large piece of placenta retained (why I had the D&C). Unfortunately due to a lot of blood loss during the D&C the placenta piece still wasn't fully cleared and may require more intervention to remove it so I haven't got the all clear for pelvic floor physio . Although the pelvic floor physio I had pre baby hadn't helped so far. 
You mention a swab to test for a vaginal bacterial infection - could this be implicated in my pain especially given I had a D&C? What kind of infections are these? 

5. Living away from home we have no family or close friends to help! But we are managing pretty fine and fortunately my baby sleeps well 😉
I've got to try something so I guess that will be either back on the ABs or something like Elmiron or instills. I could try the naturals you've talked about in previous posts and hope that they make a difference. 

7. If many cases diagnosed as IC aren't true IC then I wonder if it's worth taking IC medications, e.g. Elmiron, as I probably don't have IC myself, I'm assuming. Have you heard much on how successful Elmiron has been? 
When you say 'gynaecological issues affecting the bladder', what are these? They could be worth me investigating.

Posts: 76
Reply with quote  #4 
And thank you, yes the little one is great. It wasn't easy getting pregnant generally and with these awful symptoms and was a worry being on so much medication, but she is great and doing really well 😉

Posts: 1,131
Reply with quote  #5 

To get hold of Prof’s private patient details, do contact the BHUK office they can provide these. Alternatively if you have your paperwork with you, you can email the NHS address and they will provide the private contact details.

Up the D Mannose, thats not enough tablets. Take ideally 3-4 every 2 hours. The powder is often better than the tablets. A good website to have a read of is Sweetcures of York. And yes you are right, it is proven against ecoli but not against other bacteria.

In terms of gynaecological issues these could be a bladder, bowel or vaginal prolapse, fibroids, endometriosis - all can impact on the bladder by putting direct pressure on it thus not allowing you to empty properly and causing some urine retention. Thus infections can bubble up.

Bacterial infections can include bacterial vaginosis (BV), yeast infections, Group B Strep (GBS), and trichomoniasis.

There are lots of posts on here regarding the success of Elmiron and other IC medications so do have a good read. It’s success rate is low - around 30% but it has helped some.

Posts: 76
Reply with quote  #6 
Isn’t 500mg equal to one teaspoon?

I used to use sweetcures in the UK. I’ll see if they deliver here...
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