To ask for drastic action re my recurrent UTI's?

[Borninatrap]

I have been suffering with them since I was a little girl (after being sexually abused for 10 years).

I'm now 38 and I'm averaging 2-3 a month. This year they have increased significantly because I'm peri menopausal (I think). I do a urinalysis every week (I'm a midwife so I have access to a machine) and I always have white blood cells at 2+ and when I'm having a bad attacks I have nitrites. I'm on a prophylactic course of AB's.

Having sex makes it worse so I'm looking at a miserable existence where I can't be with my DP sexually and I have already cut out sugar, alcohol and coffee all of which I enjoy .

I am seeing my urologist on September 11th and after nearly passing out on the toilet this morning I'm seriously considering asking him to take drastic action, like removing my urethra. The way this is affecting my life, a stoma seems preferable. It is driving me insane and the high dose antibiotics I start taking when an attack occurs make me feel awful. I'm on stage 2 sickness at work. I'm really at my wits end. AIBU?

That sounds awful, are they proposing long term prophylactic abx? Thinking about the surgical options, might you actually end up more vulnerable to infection? Have you been assessed fully for retrocele, proplapse etc that could be causing a mechanical difficulty emptying and consequent collection of urine? Sorry if this is all old old discussion :(, I just feel so cross for you, especially with your history and then a job predisposing you to utis (also a midwife). Can you have long term IV s? Just thinking like CF sufferers for example? What do your kidney scans look like?

I have so much sympathy. You can still get infections with a supra pubic catheter or urostomy though. It really won't cure the hideous problem.

What tests have you had? Cystoscope? Have you had urodynamics? If you're not able to fully empty, it may be the cause. If so, they might suggest intermittent self catheterising but even then, there's no guarantee.

Random question but do you eat a lot of tomatoes or tomato based products?

You are not being AIBU and your situation sounds intolerable; but the action you suggest sounds so drastic, also 38 is very young for peri-menopause. 3 things: 1. Is your DP a longterm partner i.e years and years? 2. Have you spoken to your urologist about the abuse and potential damage that may have caused? 3. If the infections are as chronic as you describe, consider that the antibiotic you are given as a treatment or as a prophylactic may now be ineffectual and ask for a different one. But I think your urologist should answer most questions for you and hopefully will give some sound advice.

Thanks for the reply candy and xenia I have had cystoscope, MRI (T markers came back as raised so there was a possibility there were tumours but they ruled them out as bladder lining inflammation), kidney and bladder US. My kidneys are scarred but functioning is normal and I fully empty my bladder so it's not a voiding issue. The urologist thinks it's a combination of a sticky lining and my blood group. And the fact that due to staffing I don't get enough breaks empty my bladder and drink enough fluid so my job contributes as you say Xenia.

I don't know much about the mechanics of ostomy so thanks for pointing out that it's a silly idea. I know deep down it is. The dragging feeling down below is maddening.

I wouldn't say I eat a lot if tomato based foods. I'm heavy on dairy mostly (cheese). One thing I haven't explored is probiotics or acupuncture (HCP scepticism ) but I've been reading papers & might open up to this possibility?

Have you explored d mannose ?

enceladus sorry xposted. Been with DP 2 years. I'm only guessing re peri menopause because the condition ramped up when pg with x3dcs and I thought the hormonal change might be a link?

I asked the urologist about the abuse and its physiological impact because gynae confirmed cervical and vaginal wall scarring but he said it won't have had an impact? He was really dismissive about it and basically jumped to questioning if I'd had enough psychological support (I have).

I don't think it's as simple as removing your urethra - it's a total cystectomy (removal of bladder) and using some of your small bowel to make a fake bladder that you can catheterise or have a stoma bag. It's a massive operation, all day in theatre.

Ive met one person that had it done - a man who had recurrent admissions to critical care with overwhelming sepsis from UTIs and nearly died more than once. His surgeon said it was an incredibly difficult operation as his bladder was scarred and stuck to surrounding tissue. He spent 2 weeks in intensive care post op. Not sure what the long term outcome has been.

There may be more "in between" options available but all come with their own risks. Hope you find something that helps.

I think one of the easiest ways to help is to make sure you're drinking/weeing enough. Strong urine will irritate your bladder.

Perhaps you can explore "reasonable adjustment" at work that you HAVE to have time to drink water and pee. Are you a union member?

Literally you are only asking for 5 mins to drink not have a break?

skyllo that's really interesting, thank you. I'm a long way from that level but worry about sepsis a lot, obviously. My bladder is so bloody incompetent!

Hi try the probiotics, they really helped me

I'm in UNISON and the coordinators do try to encourage me to grab water when I can. We are just stretched that I can't always go immediately. I'm sure the holding doesn't help.

We are on rotation so if I'm in clinic it's usually not too bad but if I'm on delivery or ward it's really busy. Plus it's always so hot! I had throughout pg hyperemesis with all 3 and was at the 5+ ketones/collapsing veins/Picc line stage so I dehydrate more quickly that normal after that. I do down a litre on break. And my fluid intake at home is massive. I definitely need to address the holding though for certain.

party any you can recommend?

Do you have any endo issues etc?

I have renal failure but also my immune system does not fight bacterial and fungal infections so was on IV antibiotics at home every other week for kidney/UT infections.

I have always had horrendous periods, heavy bleeding clots etc and thought that the UTIs were linked but GP etc never took me seriously until I had a cancer scare and Gynae examined me and was surprised at how bad I had endemetriosis and other issues. I had a keyhole hysterectomy and recovered really quickly.

That was 9 months ago and I have not had a UTI since. My immunologist is happy as they were putting IV lines in every couple of weeks.

Hope you get it sorted soon as I know they really do rule your life.

Take care

Xx

Is it possible you have a urethral stricture?

I really do empathise with you. I had recurrent UTIs as a small child. They went away but came back in my late teens (probably when I became sexually active). I would have around 2 attacks a month which got worse and worse. There would be a lot of blood in my urine. My GP spoke about the possibility of surgery as he felt the scar tissue could be restricting the urethra passage and be causing more infection.

When I had my first dc mid 20s I ended up having an epidural and was catheterised (sp?). No more recurrent utis after that. It's bizzare. I only get them now if I pig out on a lot of sugary food e.g chocolate binge. I've spoken to GPs since and floated my theories that having a catheter somehow enlarged the diameter of my urethra or maybe pregnancy changed the structure somehow .

I honestly wouldn't advocate alternative (or what some would call 'woo') therapies over orthodox medicine or diagnoses but in the absence of anything obviously 'mechanical' causing problems - and the fact you're feeling desperate about a long term problem - I would explore some options and do some research. Find a good (qualified/medical) medical herbalist. I've done this in the past with great results and I also do believe in the efficacy of acupuncture, beyond the placebo effect. There'll be plenty comments to say there's no evidence for it but there is some research to back up its effects. I've also used Chinese herbal medicine in the past for gynae problems with frankly amazing results. If you're inclined to go down either route, find a good practitioner - it may well be worth a shot. Someone has mentioned d-mannose (which only works if the infection is e-coli), I would also suggest uti/bladder-specific herbs such as uva-ursi, buchu and corn silk. Hormone imbalances (not just peri-men) can also cause bladder issues and it might be worth having a good look at your diet for anything that could be causing an inflammatory response, and adding in a good probiotic. Wishing you well, I hope you get some answers X

mintbiscuit, what did the GP say about those theories? I can only add that I had a similar story and after a cystoscopy (which didn't find anything) they've stopped.

mint the cystoscope said I have a normal urethra so I don't think I need a dilation and I've had a catheter in too during childbirth.

Ellen thanks. I'm so desperate I will try anything.

maggie I have menstrual flooding but that's post sterilisation? Something to think about though.

Have you tried d manoose? It is a natural supplement that is essentially just sugar or something and it works by binding the bacteria to it.

I had recurrent cystitis/utis and this was the only thing that worked. I had been referred to urology and they hadn't helped.

Also have you completely cut out all caffeine and alcohol?

curlylocks101 both GPs I mentioned this to mentioned it was possible. Although I've never floated the theory with a urologist who would be the expert here. It's so weird though. Everytime I have the odd UTI now I do panic that it could be start of a slippery slope though.

Borninatrap Sorry had missed a few of your replies when I was drafting my first post. Sticky lining... is that just something that some of us are predisposed to? Or is it caused by something? Also, have never heard of the blood group theory. Did your consultant elaborate on that? (Sorry for questions, I'm genuinely interested is all)

When you say ,you are on a prophylactic course of AB's does that mean a low dose of antibiotics as preventative measure? (Sorry my medical knowledge is limited).

WCC in urine aren't diagnoatic of an infection. If the WCCs Are positive but nitrates negative, it could just indicate inflammation.

Inflammation can be caused by other conditions, most of which have treatment options available.

I wonder if vaginal oestrogen might help your issues e.g., Vagifem.

Uti and bladder issues can be exacerbated during Peri/menopause (google vaginal atrophy).

D mannose
Probiotics with lactobacillus
Uro vaxom tablets or vaccination
Long term low dose antibiotics

Can you pay privately and see a specialist?

Don't know if this will help...I used to get recurrent UTIs, ended up getting referred to a specialist who told me I may have 'a lot of gunk building up inside your bladder'. She operated, 'cleaned my bladder out' and I haven't had another infection since. Her surname is Hockey and she works at the Royal Free, if you're anywhere near London.

Only downside is that the hospital lost my records before they could send a letter about the op to me or GP - so I can't tell you what she actually meant by 'gunk'...