To think NHS could have done more?

[joeyhaveyouever]

I’ve had bladder problems since early childhood,
I’ve had a UTI pretty much every year and increasingly as I’ve gotten older . I’m now 29, last year I had nine confirmed infections each spiking fevers, vomiting etc . Even if I’m not having symptoms when they run samples through they’re full of wbcs and inflammation markers .

The NHS has never worked out why . They’ve done two camera tests, and urodynamics, and said they’ve no idea what’s wrong or why and it’s probably not anything they can sort . GP has said I just have to learn to live with it . They have given me so many antibiotics that I’m now allergic to most of them (penicillin, trimethoprim and nitrofurantoin) .

Last camera test they did they said post op that inside of bladder was inflamed, stiff and very small . They said a doctor would contact me to discuss why that might be the case and if there was treatment . That’s never happened .

Since then I’m in pain most days, peeing is very sore, I get cramping pain every time my bladder fills . Waking up in the morning is hell . When I rang reception at surgery today to ask for advice she said it’s now for a pharmacist to manage, or to do self care, not a doctor . They said the hospital won’t be contacting me any time soon either .

I’m exhausted of it all and especially the constant waiting . I’ve had these problems for years but I’ve only ever seen a consultant 5 times . Each time they tell me I’m a mystery; they don’t do urology for pre menopausal women and they don’t know much about it - surely that can’t be right??

I’m on FB and others with similar issues seem to be given treatment, advice, tests, physio even to help . So surely it can’t be OK that GP has just basically said to get used to it ?

YANBU. They fall down on a lot of things but someone will be along to tell you at least it's not covid and that we're in the middle of a pandemic.

YANBU, you need to be a squeaky wheel.

Go back, don’t accept that you need to get used to it.

Have they not diagnosed you with Interstitial cystitis? That's what it sounds like to me!

Interstitial cystitis (in-tur-STISH-ul sis-TIE-tis) is a chronic condition causing bladder pressure, bladder pain and sometimes pelvic pain. The pain ranges from mild discomfort to severe pain. The condition is a part of a spectrum of diseases known as painful bladder syndrome.

Could you afford to see privately a womens health physio to see if you have a pelvic floor dysfunction that is contributing to this? Also have you tried D-mannose? It is a supplement that e coli binds to and can prevent utis. I take it everyday and you can take a bigger dose if you get an acute infection.

You need to see if you can n track down the guy in this article
www.google.com/amp/s/amp.theguardian.com/society/2019/feb/20/in-pain-all-the-time-will-there-ever-be-relief-for-women-with-chronic-life-changing-utis

I think he’s got a v long waiting list, recognise him from Facebook . They have suggested a pelvic floor physio, as I have vaginismus as well, but definitely can’t afford private unfortunately .

Will google dmannose too .

I know they’re very busy with covid, although local hospital only has 10 positive patients out of a population of 550k ... I’ve worked for the nhs and most friends/family still do .. but this has been going on since 2009, they could have done something in the ten years before ...

They said they don’t think it’s interstitial cystitis as doctor said I wasn’t in any pain when he filled my bladder under general anaesthetic . He said if I had it I’d have showed signs of pain/distress during filling - despite being unconscious . Not sure how that works . They did say if it was that they’d treat it, but as they’re convinced it isn’t they won’t be able to do anything .... The more I read online the more I’m convinced that’s not totally true .

As a PP said, it sounds like interstitial cystitis (now called painful bladder syndrome). I have been diagnosed with this and have had to leave teaching because of it. There is no cure as such (except an operation which is pretty major and would really be the last resort) but there is stuff they can do to minimise symptoms. It is a chronic (ie lifelong condition). You need to go back to your GP and insist he or she refer you to a specialist urologist at a hospital. Getting a formal diagnosis is your first step, plus specialists can prescribe medication that GPs can't. Good luck OP and have some , it really is a shit condition

It all sounds awful and this “GP has said I just have to learn to live with it” seems to be so typical of what many doctors say to female patients about all sorts of issues and pains they have. I honestly believe that if men got pregnant scientists would have fallen over themselves to find a pain free and risk free way to give birth long ago, somehow.

I agree with others don’t give up, be persistent. Really hope you get somewhere soon.

Please try a supplement called D-Mannose. You can get it on Amazon.

After 30 years of daily pain and discomfort from urine infections/interstitial cystitis, it has truly been a life changer for me.

3 capsules 3 times a day to start, now I'm just on 3 capsules once a day. It was actually recommended by the NHS consultant who said there was nothing else they could do for me and I'd just have to live with it.

They said a doctor would contact me to discuss why that might be the case and if there was treatment . That’s never happened
Did you chase? Sometimes you have to take matters in your hands even if you shouldn't have to.

You can ask for a referral to any consultant you wish to see. It may be slow but do your research and find someone who has a specific interest in your problems and then firmly insist on a referral from your GP.

I would never accept ‘learn to live with it’ from a GP. They are mostly wonderful doctors but they are not specialists by their very definition.

I think your treatment by your GP surgery and Hospital Trust is awful. That your GP practice refuse medical care from a doctor for this condition is shicking.

Try to chase up the hospital about the results of you last camera test. If you don't get a response, then contact PALS.

If you still don't get a satisfactory response, then contact your local Clinical Commissioning Group (CCG). They award NHS contracts on behalf of NHS England. They may have information on referral routes or be able to direct you to where you can get help.

Still no response - start contacting your MP regularly. It may spur them into action the help your case.

See if you can get referred on NHS for womens physio. It could all be down to pelvic floor dysfunction as the bladder is so close to the pelvic floor and if your muscles there are tense it can make your bladder very sensitive. Perhaps you could Google exercises to help relax your pelvic floor?

But I would also definitely suggest d mannose.

Also agree with whoever said uptrend that doctors are used to brushing off women's issues and saying we just have to live with it but I bet if men got chronic penis pain there would be a lot of investment in treatment!!

Definitely keep pushing, OP. You can be referred to NHS physios and nurse practitioners who will help with vaginismus too. It’s not good enough to be told you just have to live with it when there appears to be a lot left to try.

Just a wee update; finally spoke to a GP again (been waiting since mid June) - he said that I’ve simply been ‘forgotten’, which is the third time they’ve said that now .

He found a letter from October saying they have potentially got a diagnosis following camera test (which they said showed multiple severe issues) but needed more tests, an urgent review and treatment plan . Said he would ring hospital this week and ask why nothing has ever happened - but did say I’m probably back at the bottom of a very long waiting list (ie years) .

Meantime he said if in severe pain, another UTI or can’t pee just ring surgery or chemist ...

He did say if I complain I might get seen faster . Not sure that’s the most helpful thing to do though !

Re physio they aren’t sure - said it isn’t generally offered unless discussed with a consultant, and they can’t get me to see a consultant yet, and also said physio not really being done now unless very urgent .

I am managing to pee a bit, just straining to go and finding I’m either every ten minutes or only twice a day ... not great !

Thing is. As much as I understand your distress, they cannot give you a new bladder.

What do you actually want? Sometimes cures just do not exist.

Actually ready your last post re struggling to pee - a long term catheter may be needed. Will you allow that? Or maybe single use catheters?

@CoffeeRunner

Actually ready your last post re struggling to pee - a long term catheter may be needed. Will you allow that? Or maybe single use catheters?

Have had - I’ve had a foley I think 10-15 times both at home and in hospital . Did get told once if it landed up being a longer term thing I’d probably end up with an SPC eventually .

I’ve had training in ISC - I’m wary though as end up getting a UTI each time - I’m dyspraxic so it’s definitely not done well .

I’m not sure what I want totally but to know what’s wrong and why - I do accept that whatever it is they won’t be able to cure it or probably even make it much better ... but it’s just frustrating .

When I had the ISC training the doctor said then it was a temporary stop gap, no more than 6 months until they worked out what was wrong and a long term treatment - that was three years ago ... it’s a very long time to still be told they’ve no idea and that they’ve ‘forgotten’ to follow it up .

Have bladder instillations been suggested?

Try a ketogenic diet. When I had chronic cystitis it was caused by a high carbohydrate diet.

I really feel for you. As others have said, d-mannose is definitely worth a try, it changed my life. Sounds dramatic but I was getting a UTI multiple times a year, every year, and now haven't had one for almost two years (still can't believe it!). I had previously been on antibiotics regularly but it kept coming back and one time they didn't work at all.

During a particularly bad UTI, in desperation I did lots of research online and came across d-mannose. I was a bit sceptical of the countless glowing reviews but bought some capsules on Amazon. I took 3 capsules 3 times a day as directed. My symptoms eased by day 2 and by day 5 the UTI had completely gone! Once it was gone, I reduced the dose to 1 capsule 3 times a day for 2 days then down to 1 capsule once a day for a further 3 days.

A couple of months later, I felt the early signs of a UTI as usual and started taking these capsules immediately. Thanks to these, it never developed into a full blown bout. It has now been almost two years and, even though I haven't taken the d-mannose capsules since, it hasn't come back. I keep some just in case though!

My GP had also told me that suffering with regular UTIs was just one of those things I had to live with. Extremely glad I gave d-mannose a try. Hope it helps you and anyone else reading who suffers with UTIs.

I never knew over use of antibiotics made you allergic 😮

GP has said I just have to learn to live with it

I heard that from my GP too. I paid to go private, no more issues once I had treatment.

I am another person who has resolved urinary symptoms with d-mannose. There are research papers into it's effectiveness.

www.chronicutiinfo.com/intro-key-info/treatment-uk-specialists/

You need to see someone on this list. You may have to pay privately.
Ased Ali is lovely.