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Endometriosis UK
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Referral to endo centre/urine infections

I have moved to cornwall been here for approx 1 year. I have /had stage 4 endo and 3 surgeries now on long term zoladex although I may stop for a while to have a bbreak from it.i was seen by a great consultant in Oxford and on my last appointment with him last march he said he had written to new gp in cornwall suggesting I be referred to endo centre in cornwall.for over a year now I have suffered with urine infections and horrendous pain with them he also said it could endo related as I have had involvement with bladder and ureter in the past and almost certainly the pain I get is a flammitory response to infection which is also likely to be elated to endo I have seen 3 gps in one practise who all say a referral to specialist is not needed and it will be dealt with at gps.although all I come away with are antibiotics which work then a month later it all comes back.should I push for a referral I know I'm zoladex but I have been told I still have endo and more surgery is not an option hence the zoladex.any help please the pain is getting too much.Xxx

8 Replies

Looks like the old E-coli issue again. We have been discussing this a lot recently as it is affecting so many of us.

The bladder e-coli bug is becoming drug resistant - so survival of the fittest scenario - the antibiotics are killing off the weaker e-coli bugs - but the ninja warrior ones are hanging on in there stuck to the walls of the urinary tract system and biding there time through the antibiotics.

They are covered in a biofilm that protects them from harm (antibiotics).

So initially you think hooray - ecoli is dead, all is well, peeing is normal again...but not for long before those evil ninja e-coli bugs are popping out of the biofilm and rapidly repopulating the bladder again.

This has nothing to do with poor hygene on your part. this is not something that you are -reinfecting yourself with by not washing clothes at high enough temperatures or wiping back to front on the loo (which you shouldn't do anyway).

Whether your endo is active or not, whether it is everywhere or surgically removed - will not alter the world of e-coli. It's too smart for that.

It has to be treated as a separate bacterial infection to the fact you have endo. So your GP is your port of call regarding the prescribing of different antibiotics until the right one is found to zap through the biolfim and kill the ninja bugs that just won't die normally.

here's a recent news article medgadget.com/2013/01/polym...

This could be the way forward as more and more bugs are becoming resistant to antibiotics because their biofilm coats are keeping them protected.

medscape.com/viewarticle/50... explains the problems in the bladder.

I hve had the ecoli attack me twice since surgery and a catheter. But I have had a long spell now (touch wood) without recurrance. My GP was very good about checking my pee - sending it off the the lab to be indentified and then starting me on antibiotic and then another till the job was done. So far so good.

Until my surgery for endo - I had only once decades ago had a urinary tract infection. And the symptoms of that were quite different to the e-coli ones of recent years.

I cannot offer you any advice on a cure -but hopefully by explaining the process you have a better idea what's going on inside the bladder and how separate this is from your other battle with endo.

The bladder battle does not need a specialist - it needs determined effort with anti-biotics that break through the biofilm in you specifically, and that takes trial and error to find one that you are not drug resistant too. Keep on fighting it, keep on heading back to your GP with a weekly pee pot to get checked for infections - until you find the cure.

The drug companies are hard at work looking for ways to break down the biofilms - so we can only pray that they manage to resolve that problem for all our sakes in the future.


Hi mablesky if your previous consultant recommended that you should be referred to a specialist then you should absolutely push for this. Be proactive though - dont just leave it all to your gp. Look up yhe BSGE website and look through the list of accredited endo centre and also aspiring endo centre to find whichever one best suits your needs. If you have endo with bladder involvement then it is essential that you have a specialist involved. Good luck. P.s one glass of cranberry juice per day & drinking lots & lots of water really helps in the fight against UTI's. Best of luck xxx


Thanks for all of the above I feel a trip to gp is in order to get to the bottom of this.


Hi whereabouts in Cornwall are you? I'm in Plymouth and have a great endo specialist, it might be worth you asking to be referred up this way.x


Sorry also with regards to the infections, I suffered a year of constant infections in 2006 way before they knew I had endo. In the end a kidney specialist put me on 6 months of antibiotics. Two different types, alternating them each month. This worked. I have had the odd infection over the years since then but nothing like the horrendous ones back then. Now recently diagnosed with severe stage 4 endo and my specialist said it was probably all linked.xx


Thank you I'm near st austell so Plymouth wouldn't be too long away I will need to speak to gp to get this sorted either a referral or get to the bottom of this it's all very well them sending me packing with antibiotics and they work for a while then back to feeling grim again thanks again


Yes you are not far then. The other endo centre is in Truro.xx


Hello :) it might be worth googling interstitial cystitis just in case - I have this and endo. It's a constant cystitis with no infection present and that's why taking anti biotics is useless for sufferers of IS and doesn't help. Also those with a more sensitive bladder that are prone to infection shouldn't rely on cranberry juice from a carton (freshly squeezed in a home juicer is fine). The sugar/ preservatives/ additives do a lot more harm than good. I found on the hard way back when my symptoms started showing and everyone and their mother was telling me to drink cranberry juice. My specialist quickly told me otherwise. I hope you get the answers you need soon! Xxx


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