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Millie

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Reply with quote  #1 
Hello, just wondering if anyone is in the same boat as me?

Uro/gyn specialist diagnosed that my chronic UTIs were down to urogenital atrophy and that HRT was required. To cut a 20 year story down I think she is right...my hormones have probably been too low for years (like my mum) making me increasingly susceptible to infections. 
These repeated infections (I believe) are also now well embedded...in fact I refer to them as the same single infection just recurring over many many years.
Combined HRT seemed to help very quickly but I can't get on with it at all...the increased cancer risk is simply unbearable for me to contemplate (lost 5 family members due to BRCA2 gene fault including my mother)..losing my aunt and cousin recently to breast cancer reinforces my reluctance to gamble with my health like that.
So my question is, do you think a treatment for biofilm infection is worth considering or, given the fact that my low hormones leave me permanently at risk, would this just be a waste of everyone's time? Am wondering whether, even if this infection could be cleared, a brand new one would turn up sooner rather than later rendering it all a little pointless?
Thanks in advance for any reply
Moderatorsusan

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Reply with quote  #2 
Millie

This is a very difficult one to answer given the family history of Breast Cancer. I assume the combined HRT you have been taking was in oral form rather than localised around the urogenital tract? I am certainly aware of people with a family history of breast cancer who have been prescribed Vagifem for example which is localised topical oestrogen to help with severe vaginal atrophy which has helped enormously with symptoms. They have been carefully managed by their HRT specialists whilst dealing with their chronic bladder issues. Have you discussed localised oestrogen with your uro gynae?

As you say once a biofilm is there it is difficult to remove as the nature of one embeds itself into the bladder wall. However symptoms can be managed on treatment and there are in development new in bladder treatments but these are a few years away. At the moment its oral antibiotics or a regime of naturals. Patients are seeing resolution of symptoms but as with anything the quicker you can get into treatment the quicker things will resolve.

There are two NHS biofilm specialists available you can be referred to so you may want to ask for a referral. The choice obviously is down to you as to whether you want to take long term antibiotics. Certainly lack of oestrogen in the urogenital tract will provide greater risk of infections as you are aware but you really need to discuss possible localised oestrogen to help with the atrophy and then decide on whether you then treat the infection.
ModeratorKate

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Reply with quote  #3 
"Am wondering whether, even if this infection could be cleared, a brand new one would turn up sooner rather than later rendering it all a little pointless?"

Doh! I am sorry you are feeling, understandably, so low and undecided, as Susan suggests local HRT maybe a way to start going forward, as certainly keeping this area plump and moist, will deter bacteria from getting a grip.

It is a long haul trying to find ways around, the best and safest treatments, it is a case of talking with the docs, nurses, consultants, and then trial and error, which of course sadly in your own scenario, you have some dreadful family history.
BUTTTTT!!! as a few of our Members on here have posted success stories, try to see there will be, light, at the end of the tunnel.

Do keep posting, as you know we will always listen.

Kind regards
Kate


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Millie

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Reply with quote  #4 
Thank you Susan and Kate

I tried patches first which did help the bladder but the progesterone was a miserable experience. Then pills (no help) and finally localised Estring (oestrogen only) but this hasn't helped at all. The Consultant feels localised HRT wouldn't be enough to help me and once again I think she's right. I felt so good on the oestrogen patches that I was prepared to try again...until a revised warning re cancer risk increase (now considered 3 fold) came out. My GP said what I was thinking...I would actually benefit from a hysterectomy as then I'd only need the oestrogen (i.e not combined HRT) and the cancer risk goes down considerably. However, she said she doubted any surgeon would remove healthy tissue for such a reason and I too think that's quite a radical step!
Bit of a rock and hard place for me...it's like the answer is within my grasp (patches) but the trade off is so high. I didn't actually inherit the BRCA2 gene fault so my risk is the same as everyone else but because I've seen so much cancer it seems foolish to gamble whatever the chances are. My mum (didn't know at the time) did carry the gene fault and was put on HRT....she died of ovarian cancer about 5 years later...and would you believe her consultant at the time said it was fine for her to carry on taking HRT throughout her chemo etc ! Of course now we know this probably fed and possibly even started her cancer...or at least gave it a good kick start. 
Anyway was just trying to explain my reluctance....to suffer cystitis for 20 years has been miserable but not quite miserable enough for me to continue down the HRT route.
I've taken many courses of antibiotics over those years, including some very powerful ones and for ureaplasma (just in case but no evidence of infection). I had to take one (name slips my mind) because drugs I'd been given for a UTI encouraged a c.difficile infection by killing off the good gut bacteria I had left. So am also thinking I may have already used up the long-term antibiotic route for killing off this embedded infection.
Awaiting the day we finally get a vaccine, but not holding my breath
Moderatorsusan

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Reply with quote  #5 
Millie thanks for explaining everything and I completely understand the situation.  At least you have done the Braca 2 test so you know that the genes are not inherited but as you say, you simply can't face using HRT because of the cancer concern.  For information your bladder probably worsened on the combined HRT as the progesterone will relax the smooth muscle wall of the bladder sending those need to pee signals to the brain.  Its often why ladies flare in the second part of their menstrual cycle as their oestrogen lowers and the progest takes over.  

I had a total hysterectomy 2 years ago but this was because of severe endometriosis and adenomyosis plus fibroids.   I will say it has helped my bladder enormously but obviously I would never recommend anyone having surgery unnecessarily.

You may not be aware but there are vaccinations for UTIs available already.  They are called Uromune and Urovaxone and if you call the BHUK office on 0121 702 0820 they can have a chat with you about these and send you some information.  Definitely something worth exploring.
Millie

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Posts: 793
Reply with quote  #6 
Thanks again Susan. I had read up about something similarly named (Uro something) as I recall...made abroad I think? You take pills or pessaries rather than a jab? Might be different though so that's very interesting...I shall call, thank you
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