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?

Also as the pp said if you just have ++ white blood cells on the dip test and not nitrates it is likely to just be idiopathic cystitis. Do you send samples away to determine if there is a culture? I'm sure you know all this being a midwife but ABs wouldn't help if there is not a culture.

My gynae issues followed my steralisation. I was always on the heavy side but it changed drastically following being steralised.

I cannot tell how my hysterectomy changed everything. Even now I am in end stage renal failure and feel tonnes better than before.

Please look into the gynae side too.

Xx

Oh op I feel for you, I had a low level UTI for about 3 years, I'd take antibiotics for a week or so and it would go, then it would just come back again. In the end it just went on it's own, no idea why or how. I've had one since then and was terrified that it was going to happen again but it went with the antibiotics as it should have. I was so relived!

I hope you get it sorted, it's a horrible horrible thing to live with.

Have you read up on interstitial cystitis? Not diagnosed much in the UK but the US are years ahead of us. There is a great website and support forum that got me through many difficult times.

The ++leukocytes are a constant, whether I'm symptomatic or not. But the nitrites are usually +++ or ++++ if I'm symptomatic.

I take a low dose of AB all the time as prescribed by the urologist. I take 500mg of cefalexin when the nitrites are present (got a stock of them). I always send off a sample for culture because in the past the growth has come back as resistant to nitrofurantoin, trimethoprim etc and moved into the kidney so I'm really careful. I'm always on edge that cefalexin will be the next.

I haven't tried to D-Mannose because I've cut out sugar, caffeine and alcohol but I'll defo try it.

nothing I have never heard of the procedure? The lining of my bladder is constantly inflamed so maybe my urologist hasn't changed misdeed it?

The urologist didn't expand on the blood group because we were just throwing ideas around but I will read into it more.

Another vote for dmannose.

I had 6 months of recurrent uti's and nearly lost my job / mind and haven't had one since I started taking them.

I used to get recurring UTIs (2 or 3 a month) and I was utterly miserable. Very hard to understand unless you've been there.

A found a food diary made a big difference.
In the end I gave up tea/coffee, raw tomatoes and chocolate. The difference has been profound and I usually get a UTI once a year now.

Also a preventive measure of D-mannose can be very useful.

Have you heard of or tried D-Mannose? My DH is paraplegic and takes it in addition to a low level antibiotic. He's noticed a big decline in the frequency of UTIs since taking it.
I think the theory of how it works is that aggravating bacteria bind to it and then get harmlessly excreted. It was mentioned in a New Scientist article recently so not too woo!

My DH gets it online- you take 3-6 tablets a day.

The blood group thing is interesting because my DD also suffers from them (but not as regularly as I do) and we have the same BG. She's only little too.

The sticky lining is just what some women have. If the bacteria (usually ecoli and caused by transfer after sex) adhere to the lining normally they would be flushed away by the urine but if the lining is 'sticky' they stay and colonise .

The urologist seemed to rule out interstitial cystitis because when I'm symptomatic my sample always grows something. But why would the prophylaxis AB work if it isn't?

The urologist is actually in a private provider but is paid for by the NHS so going private would be pointless.

Would you consider changing jobs to one that would allow you to actually have toilet breaks and drink water?
(unless people have worked in job that is so busy you cant take even toilet breaks, they won't understand how impossible it is)

Im not saying that will solve things as it is unclear what the cause of your symptoms are and it sounds like there are other things going on but it might help in terms of overall wellness and trying to get yourself as healthy as possible to give your body the best chance to fight off whatever is causing it.

Have you only seen one urologist ? Have you had a second urology opinion?

Im not trying to minimise the despair you are feeling and your doctor may be great but if there is a chance that another doctor may have different treatment approaches that might work then it is worth investigating.
Write a factual concise list of rough dates/incidences, symptoms , investigations, results etc to take and discuss with them.

I sympathise I had a UTI last year and ever since then I have been having a lot of problems I only get the urge to go when my bladder is full to bursting and then the feeling is between my legs for some reason it can sometimes hurt when I do go and at my worst I can be sat on the toilet for 2 hours just emptying my bladder because of how uncomfotable I can be if my bladder isn't empty even if it's just a little dribble and I drink a lot during the day. This has been going on for a year and I haven't been to the doctors about it because I don't have the time. I even embarrassingly had an accident in my sleep a few months ago

As far as I am aware, sterilisation making periods heavier is a myth, as women are often sterilised at a common age for these symptoms to present, so if you're flooding, there could be a gynae rout to investigate? Really hope you get somewhere with it.

I also respond D Mannose. I get it from the states as I have family there. I used to get a couple of UTIs a month but haven't had one for ages now (fingers crossed) but I HAVE to do the following. Any deviation and I get one straight away.

1. drink 2 ltr water a day
2. maximim 1 caffeine drink a day and only if drank all the water (tea, coffee, cola etc)
3. D Mannose daily
4. alcohol only once a week and then no caffeine at all for 2 days afterwards. Must be fully hydrated before Alcohol and drink pint water before bed.
5. alway wee straight after sex and wash bits with warm but soap free water. Immediately. No time for snuggling!

If I stick to all that I am okay. Night mare on a camping holiday or a hen weekend or something though.

Def think about endometriosis - 1 in 7 women have it after all - flooding etc isn't that common, and tubal ligation has I think been linked to endo because it can encourage the period to back up, as it were, rather than flow down normally

D Mannose has helped me enormously too. As I understand it there is a scientific basis for it, not woo! It's not cheap but I've not had a UTI since I've started taking it.

Poor you it sounds hideous.

Bless you OP. I too have suffered with bladder problems for the last 20 plus years. It's miserable. I totally know where you're coming from in terms of relationships. My marriage ended 2 years ago, and I hadn't been able to have sex for over 10 years because it wasn't worth the pain. So having bladder problems does impact hugely on your life. I've seen countless consultants and had loads of cystoscopies. I asked if they would remove my bladder but they refused. I would recommend taking d Mannose.

I had an op go wrong which meant my bladders was pierced. I get at least one it is month needing 10 days of antibiotics if not iget kidney infection. It horrible but I live with it. You need to go when you need to go holding it makes it worse for me.

I'm a nurse so I find I can be susceptible to UTIs too - thought not in the way you are.

If being in clinic improves the problem as you can wee and drink as much water as you like, have you considered a different type of midwifery role? Midwifery research? Community only?

I have exactly the same issue, down to the same job.

Have had it for years.

You probably don't have recurrent UTIs, you have one chronic UTI which you've never cleared. Probably a biofilm infection. They're hard to shift and you need high dose abx. I've taken 4g cephalexin and 1g of azithromyacin every day for about three years now. Previous to that I'd taken Low dose prophylactic abx for about three years.

Actually touch wood I've taken nothing for two months and so far so good.

I see Prof Malone Lee in London, I'm nowhere near London but travel to see him. The guy isa genius. Btw urethra or even bladder removal probably won't help, there are stories of people who have done this who still have the pain and pressure they had before. God knows how. I'm in a good FB group and some women have found that oestrogen cream helps. Prof reckons the symptoms are just more noticeable when oestrogen levels are lower, not that the low oestrogen levels cause the problem.

Another D Mannose fan here. I had frequent UTIs for years and sex was my trigger too- just awful.

I get mine from Sweet Cures (online or in York.) I rarely get UTIs now but take D Mannose when I get the dreaded early twinge. It feels counter intuitive as it's a sugar but seriously, it's like magic.

I call the dmannose my magic powder. Get it from sweet cures too. Recurrent Utis are the bane of my life 😢

Got some DMannose today from a vegetarian cafe of all places (I live in a hippy town ha!) so excited to try it. Thanks for all the recommendations.

I need to get the gynae sorted as I'm constantly having to change with flooding so I'm interested in the link and will definitely mention the biofilm infection on the 11th SoPass

I feel so much better today thanks to the 500mg of cephalexin. Thanks for the handholding yesterday. I was miserable!

Advice on DM is to take it with water then an hour later drink a pint of water. Helps give it time to bind to the bad bacteria then flush them out. DD does that in the morning then takes another couple before bed without the extra water.

Hope it works OP. It definitely works for me. Please remember you are not alone x

I had this for years. Antibiotics caused thrush every time and never cleared it up properly. I remember just feeling desperate all the time. I just gave up on expecting it to get better.

I tried acupuncture, and whilst it calmed it it didn't get rid of it. It appeared nothing could get rid of it. I had bladder stretches and everything.

Then l got chatting to a friend of a friend. She was a reflexologist. She told me that she had helped someone else in my situation.

6 sessions later it had gone. That was 14 years ago. It's never come back. When she was doing it, the are relating to the urethra on my foot was really painful.

It may be woo but it cured me 😊