UTI Symptoms not going away & scared

[Honeybeebear]

Hello,

First time posting but long time reader 🙂
I started having UTI symptoms 8 days ago-frequent urination, burning, not a lot of wee coming out and ordered some Nitrofurantion from the Superdrug dr. I have had a few UTIs over the years and have used Macrobid which I think is the same and I always feel a lot better in a couple of days.
first 24 hrs of taking them I felt a lot better, but had a reaction half way through the course (pins and needles in legs/arms, numb feet) and ooo doctor said to stop and prescribed me Fosformycin.
I didn’t feel too bad on Monday, went to work and picked my the prescription, used that evening and apart from urgency to wee I felt okish.
Weds- thrush symptoms, got an oral tablet
Thurs- symptoms starting to return, frequency and a feeling like my bladder is full constantly, burning etc.
Yesterday the ooo gave me 3 days of Trimethoprim although urine test was clear! thrush really bad again so used a pessary last night.
Today- felt a ok this morning for a few hours, But then symptoms of burning and needing to wee (every hour) are still there. I’m scared the antibiotics are not working and every night I seems to go downhill and get worse before eventually sleeping. I don’t know if the drs will give me anymore with the urine test negative.

the last couple of days as well as the full feeling in my bladder, I’ve felt twinges/spasms- not sure if it’s my bladder, cervix, or what but it feels constant, I’m more aware of it when I’m trying to sleep.

I’m scared, exhausted and have gone from feeling normal to feeling so vulnerable.

has anyone else had to use multiple antibiotics for a UTI?

I’m supposed to be going to Spain on our family holiday next weekend but at the moment I just feel like cancelling it or DH and kids to go without me.

You poor thing. I have just been through a bout of cystitis and then thrush, and have suffered with both a lot in the past. I would really recommend ecodophilus probiotics by Bionutri. For me it definitely helps restore things after antibiotics and I do genuinely think it helps prevent cystitis in me. Good luck, I really hope you get help from the doctors.

That’s exactly what I was told - that after 3 days, the antibiotics are only just starting to have an effect. Then they’re stopped. You’re then ok for a day or so, then back to square one. Then you get on a whole rinse and repeat cycle . Because of where the infection is - in the bladder wall, it takes a while to start budging the infected cells. Some infections are far more accessible for antibiotics but this apparently isn’t one that is. People end up thinking they’re getting repeated utis but it’s usually the original infection that you end up playing whackamole with. You squash it down a tiny bit, then up it pops again.

I’m really struggling tonight, can’t sleep with the pain and constant tingling feeling.

Honestly what I did was to come off all the embedded UTI Facebook groups, in fact all the UTI groups where I read awful stories of women on antibiotics for years with minimal improvement.

And I Stopped obsessing. - I mean I was obsessed. The UTI was all I thought about all day and all night. Told myself I didnt have an infection. Began to tell myself I was safe, fine and this was neuroplastic pain. Listened to the podcasts any chance I could. Read a book about it. My symptoms were 50% better in days, 90% better in a couple of weeks and entirely gone 4-6 weeks later. I was waking 6 times a night to pee, now I sleep through. There are honestly hundreds of us who have done it. Nicole Sachs fb group is fab and so many bladder pain girls on there with a great outcome. It’s not easy to accept or admit that it might be neuroplastic but it’s still real pain.

I’m so glad I didn’t go to Malone-Lee’s clinic - if you have to see anyone, see Sachin Malde. He does use longer term antibiotics but much more safely and he is very realistic. Malone Lee’s clinic prescribe them to everyone on the basis of white blood cells only - I still have white blood cells in my urine and zero symptoms. It’s not good science and I don’t trust it (l was obsessed with the idea of going there a few months ago too!)

I was initially resistant to your first comment, @Rochyella84, but I think - for me at least - you're on to something. I have had infections and a kidney infection, but, also having fibromyalgia, my body is somewhat wired to propagate pain and so perhaps there's a distinction to be made between initial bacterial infections and then a kind of 'psycho/autoimmune response'. I'll bear this in mind.

@Rochyella84 I see what you mean, but I don't think it's the same cause for everyone. Western medicine doesn't tend to look beyond each body system as separate.
I think the causes can be mixed -
Some will have embedded infection - it's definitely very real, it's been proven.
Some will have hormonal factors.
Some will have residual inflammation.
Maybe when the infection is eradicated, then whatever other bacteria grow back in our bladder microbiome may cause irritation. The bladder is not sterile.
Some will have 'true' IC , but that just means inflammation, maybe auto immune or mast cells.
Some will have neuroplasticity, like you say.
Or a combination.
I don't think it's one size fits all.

Did you see Sachin Malde? I'm considering making an appointment.

@Honeybeebear I'm so sorry you are in pain. There is a urinary painkiller specifically for the bladder called Azo, you can get on Amazon or eBay. Sometimes antihistamines help too. How many days antibiotics have you been on? Were they the correct ones according to your urine sample?

100% - I’ve come across fribromyalgia multiple times on my healing journey with this and seen a lot of success stories with that diagnosis too. It doesn’t seem conceivable that bladder pain could be neuroplastic but it really is for many many people. If I get stressed now, I get urethral burning quite frequently. It is just like a UTI. But it’s not a true infection

I agree with you to a degree though I no longer believe in embedded infection. If it exists I believe it is truly rare and not what is plaguing the hundreds of women going through Harley Streets doors. I do absolutely believe in hormonal factors though and residual inflammation. I did see Dr Malde, he is lovely and extremely measured and balanced. But I would advise anyone with these lingering symptoms to at least consider the possibility that the pain is from a nervous system in overdrive and not from a true infection. I did a focus test which showed very low levels of enteroccocus- I clung onto that as being the root cause and in hindsight I think it was meaningless. Dr Malde told me that these sensitive tests do pick up bacteria in tiny amounts and often they aren’t the cause and infact would be found in most peoples bladders. I recommend him wholeheartedly.

Harley Street do help people though so I won't completely dismiss it. I had uti symptoms that were dismissed by GPs as their tests were coming back negative. Tests at harley street showed high epithelial cells and wbc and when they went down to zero under their treatment my symptoms had cleared and now I am no longer on antibiotics. I credit them with helping when I was in a very dark place due to the pain when no one else had any solutions.

@Rochyella84 But what about this -

From the NHS own website -

Chronic UTIs

In some people, short-term antibiotics for a UTI do not work and urine tests do not show an infection, even though you have UTI symptoms.

This might mean you have a chronic (long-term) UTI. This can be caused by bacteria entering the lining of the bladder.

Because urine tests do not always pick up the infection and the symptoms can be similar to other conditions, chronic UTIs can be hard to diagnose.
Chronic UTIs are also treated with antibiotics, which you may have to take for a long time.
Chronic UTIs can have a big impact on your quality of life. If you have been treated for a UTI but it keeps coming back, speak to your GP about chronic UTIs and ask to be referred to a specialist.

I’ve been on antibiotics since 8th July on pretty much. 😞

didn’t have a urine sample at first as just ordered Nitrofurantion as 3 days usually completely puts in away for me in the past.
every urine test since Saturday has been negative.

Just saw a nurse at the surgery, she said no infection from dip test so an infection is not present and they can’t prescribe anything.

she said it must be interstitial cystitis!!!! Or it could be the thrush. I’m not sure thrush could this needing to wee feeling.

my temp was raised and she felt how sensitive my abdominal area is and said she was thinking of sending me to the hospital to be checked for appendix, but then decided to do a blood test for infection markers and told me to go to A&E if I get pains.

I literally feel the urge to wee constantly now. I give up, I’m not going on holiday like this.

Just Got some canestan cystitis sachets to try, but there isn’t any stinging when weeing anymore so not sure what they will do to help

@Honeybeebear Have you tried the Holland and Barratt UTI Care, they are D-Mannose Effervescent tablets that you take as a drink and taste ok, better than the sachet ones. They are quite expensive but I keep some and take them when I get a few twinges and have avoided having to get antibiotic.

@Februarycat no haven’t tried them but I am taking D Mannose

Can I just say that I couldn't get o at all with D Mannose, it gave me the most deadly wind. I know that it works well for others though.

@Honeybeebear That's ridiculous! Not you of course, the diabolical treatment you've had!

It's such a shame that you couldn't get the urine sent to the lab before you started antibiotics. I say that because many infections are resistant to Trimethoprim (as many as 30% resistant) and some are resistant to Fosfomycin (especially only one dose like you had). But now you are on antibiotics or have taken them recently, the thresholds are so high that even if they find bacteria, it will probably be short of the extremely high level required for them to even test which bacteria it's resistant to.

What is your temperature?

I'm not sure what the answer is, because even though the NHS website states that the testing they do is unreliable, most doctors still don't even know this.

Could you show them the the section on the NHS website I quoted above (just google nhs uti) about Chronic UTI and say to them that especially since you had already been on antibiotics then you don't think it is accurate and want a course of something stronger with less resistance profile. Even Ciprofloxacin (although it can have side effects, probably worth a try).

I know, I should take my own advice!! I'm on day 16 of Nitrofurantoin and still not completely better. I did get an NHS culture sent off before I started antibiotics, and it's resistant to Amoxicillin and Co-Amoxiclav. I find it really hard to be assertive with doctors.

Really hope you feel better soon xx

Thank you @stopthemachine

my temp was only slightly raised.

I’m thinking about if I should contact a private gp virtually, or maybe I should just leave it until I’ve finished the trimethoprim.

it all feels really right in my pelvic area- I’ve been trying to breathe and relax but it’s not making a difference.

If I can’t go on holiday, I probably won’t even be able to claim on insurance as I’m likely deemed fit to fly

I absolutely feel for you. I had similar outcomes when seeing the GP yesterday.
It's almost like there's a protocol they abide to - don't give ABs if dipstick test fine.
Your not fine, and neither am I .you know your own body and if you feel pain and feel hot then surely it's still UTI ?
My plan is, I'm ignoring what they say. I have a 4 day course of Norfloxacin left over from ages ago ( bought abroad ) I was in so much bladder pain yesterday I thought sod it and started taking them. My situation can't get any worse and it might work. The GPs have given ABs out anyway without isolating a bug.
I'm ordering some more of these ABs from a Canadian pharmacy. I'm also going to get some more when I go to Spain in 3 weeks.
I spoke with my sister in law who's a nurse prescriber. She said just take what you feel works as there can be an infection still even if the crappy dipstick test shows nothing.
My next plan if this doesn't work is to see a private GP. Can't afford it really but I need my life back.- as do you.
I personally think once once Nitrofurantoin doesn't work the AB should be changed. What's the point of giving you handfuls of the same thing ? This is what's happened to me this week. The OOH gave me the same stuff I had 3 weeks ago that didn't work ,after 4 days I had screaming bladder pain.
It's not all about me of course but I'm at the same point as you and you need to get sorted.
I think maybe go to urgent care tonight , you might find they ll give you something as uro sepsis is a thing right now. You ll see a different doctor also.
If you could get sorted then go to Spain .
Keep in the thread x

Oh yeah and my GP was so into proving I didn't have a UTI she tested me for an STI -Im 56 long time married and limited action in that department - so frustrating 😖😖

@Lliria hopefully the Norfloxacin will work- do you feel any better from starting it?

I just feel like I wasn’t listend to at all- it was like test is negative, no infection. I tried to question about the resistance and if the test was right considering I’ve been on Antibiotics for over a week but just brushed off.

I’m starting to get scared it is something else.

I've had 2 doses and do feel a bit better. Still some pain after peeing but bladder pain much reduced. I hope it works, and at least I know I've tried, as GP. Doesn't seem bothered !
I don't think it's anything else as if you think back to the beginning it started as a classic water infection didn't it- like mine.
Are you going to go on holibobs ?

I just believe it’s rare. I’m not saying it isn’t possible. But myself and so many other women who thought they had this turned out not to. Believe me, 6 months ago I would’ve laughed someone like me out of the room if I read what I am writing. I Would’ve said I’m an idiot, that I don’t know what I’m talking about and that of course I had a chronic embedded infection. And I was wrong. All I’m saying is that it is worth considering. And worth reading the stories of all the countless “interstitial cystitis” women who are now pain free.

I had this as well, married for years (I know it happens but still 😂)....tested me for STI's...all negative.....no shit Sherlock.

She was scratching her head after that.

I ended up paying privately in the end to see a urologist at BUPA who laughed me out of his office basically "do you realise how many women your age I see with these problems"....erm no. That's why I'm here!

He did a cystoscopy and bladder scan/kidney scan...all normal.

Mine I feel is hormonal. Never had a UTI in my life until I was 43, about the same time I dried up everywhere....stands to reason it's lack of oestrogen and can't believe the dots were never joined.

Glad to hear you’re feeling a bit better

I spoke to an online GP over the phone today and she was so lovely and she said it can be a low lying undetected infection. She has done me a referral for a Urogynaecologist and I’m going for an appointment on Saturday to check out what else it could be. If it’s a UTI It won’t actually be covered by health insurance as I mentioned I’d had UTIs in the past. I just want to rule other things out as the pressure on my bladder makes me worry something is pressing on it.

I’m going to keep taking the last 2 days of the antibiotics, and then see how I feel. Last night was so bad, I can’t imagine dealing with it on holiday 😓