To feel angry at the NHS and scared

[justanothermother2]

Sorry this will be long, I’m just so upset/desperate.

Mid June had elective section to deliver DD2. (Biggest regret if my life but at the time we all thought it was the best decision for lots of reasons, but my gut still said no and I will never know what could have been. That’s another story)
Within half a day of catheter removed I had burning, stabbing pain up my urethra and bladder area and urgency and pain. I said I have a uti was dismissed.
Four days later it’s getting worse and I’m still on a ward so they did a dipstick but said it was fine and possibly some minor trauma from the catheter
Two weeks in it’s really getting me down that I have all uti symptoms but it’s apparently trauma I just have to live with, midwife says this happens so much sadly

By 4/5 weeks I feel pretty suicidal (not exaggerating, c sections are hell) with the terrible recovery from section (this constant burning pain all over my abdomen and stinging in scar and in my bladder and urethra, peeing all the time, weak and exhausted from a newborn on top). Go to GP who does dipstick - all clear.

2 days later I fully breakdown and go to out of hours GP who does dipstick and says signs of small infection so gives me an antibiotic and tells me to just go back on codeine and all the other pain relief I have.
Can’t tell if antibiotic helps as am back on codeine (and laxatives as a result)

Everyone I know with previous sections saying ‘this is worrying I was fine by two weeks!’.

Meanwhile I can hardly walk or sit. Genuinely struggling to cope with newborn and five year old on summer hols.

At 8 weeks had a routine appt with urogynaecologist (from previous delivery) and dhe tested my pee as I was still presenting with uti and kidney infection symptoms now (chills, pain in back). She sent sample off to the lab to be cultured and also booked me in for a kidney scan
Heard nothing for two weeks. Was put on amitriptyline to block my nerves as clearly had ‘nerve issues acting like a uti 🙄’

Starting accepting my ‘new normal’ and felt fully depressed and resentful that I ever had kids, hating DH that all he suffers is ‘tiredness’ while my body is in this permanent pain.

Two weeks later (10 weeks pp) get a LETTER (why not f*cking call?) saying please go and get antibiotics you do have an infection

Rang dr and asked what bacteria is was. He said enterococcus. This is
A) a nasty drug resistant bacteria
B) general contracted after surgery and catheters (!!!😡)
C) notoriously do not show up on dipstick tests!

Well I fell totally apart, couldn’t even hold the baby is was distraught, DH was livid too - 10 weeks I’ve had this running riot in my body and NOBODY bothered taking me seriously.

They gave me amoxicillin and assured me that would kill it.

It didn’t.

Back to dr at 12 weeks post partum now, saying my back pain is worse than ever can we chase up the kidney scan? No they don’t get involved in hospital protocols but she prescribed me ANOTHER antibiotic.

So I start taking this antibiotic Ciprofloxacin and I swear to god I felt like I was drinking acid. And my neck and back start aching and my c section pain flares up and every time I take it I feel worse. Despite diarrhoea being a side effect I am dried out and totally constipated which is making my internal organs hurt more. Yesterday I lifted my arm and gasped as it felt like I actually tore something deep in my left side. So I googled it and it’s a sodding Chemo drug?! It’s killing my mitochondria and can cause long term nerve and tendon damage. Awesome

Three days on antibiotics that are destroying my body and I still have urgency and pressure on my bladder. So I’m now terrified of the long term damage of the antibiotic (that probably isn’t working) and want to just stop taking it, I’m FURIOUS that’s it has gotten so bad from months of total neglect and I really want to demand an emergency abdominal and renal scan to find out a) what the he’ll is going on in my uterus/scar that it hurts so bad and seems connected to ongoing bladder/urethra pain and b) whether I have kidney stones or kidney damage or a kidney infection once and for all?

I know people defend the NHS vehemently but I feel desperately let down and really worried about what the hell is happening in my body. Not to mention I wouldn’t ever have had a c section if it wasn’t for their neglect after DD1 delivery anyway. So still grieving for that too.

I am genuinely struggling to function, people may not understand that or think I’m being OTT or having a pity party but the constant exhausting burning pain in my scar tissue and bladder and urethra and the abdominal stabbing and back pain and now these hellish drugs...it’s honestly breaking me now.

Ciprofloxacin is an antibiotic. It is not a chemo drug, although it is used where patients undergoing chemotherapy have infection.

If you're reacting badly to the antibiotics then you need medical assistance. They're often overlooked but I'd first go to see a pharmacist, they're experts in medications and will know whether what you are experiencing is normal or not. They can tell you who you need to see next, and recommend an alternative treatment.

Where have you got the impression that Ciprofloxacin is chemotherapy?

Ok, that’s a good idea. I’ll try and see a pharmacist today.

Sorry if I sound irrational I’m exhausted and in pain and just want it to end.

@Yogpog pretty comprehensive info here:

biology.stackexchange.com/questions/69563/are-fluoroquinolone-antibiotics-cipro-levaquin-etc-chemotherapy-drugs

I'm so sorry you are going through this.

Is it possible you could have a tear or damage from the catheter? Could you request an ultrasound to see?

Just to ease you mind ciprofloxacin isn't a chemo drug. It's an antibiotic. Achilles tendon rupture is a very rare side effect not a certainty, none of the side effects are a certainty. I would give it a chance, it worked for me when penicillin, distaclor and flagyl didn't.

Cipro is a commonly used antibiotic. You may be having a bad reaction to it but it won't harm you in the long term so you can stop worrying about that.

I am so sorry you have been going through this.

My next step would be to see a GP today. Find out how to do this and probably even get an appointment by calling 111.

The incidence of nerve damage is less than 1 in 17,000. It is very very unlikely that they will do you any harm.

Speak to a pharmacist today and let them put your mind at ease.

@AfterSchoolWorry thanks. I appreciate everyone reassuring me on the drug thing because obviously being at home all day I’m turning to the internet too much and it’s adding to my anxiety! Am going to try and see pharmacist today.

I do wonder if it’s trauma and have repeatedly asked if I can have an ultrasound to check but get treated like an OTT sensitive mother - probably because I’m always broken and crying - because I’m exhausted and in pain! It’s so hard to be taken seriously as a new mum because we ARE tired and emotional, but it’s doesn’t mean we aren’t having actual problems.

I know you shouldn't have to, but if you have any money available I'd see a private consultant asap.

@MrsMaiselsMuff thank you, such a sensible idea just shows how crazy I am getting 🤦🏻‍♀️

Firstly I’m so sorry you’re going through all this, it sounds like hell
Some bacteria take longer to culture in the labs but even so it sounds like they should have found this sooner. Ciprofloxacin is an antibiotic but yes it’s a strong one - which your infection clearly needs. Catheters are a bugger for causing infections unfortunately my mum developed sepsis after having one in.
Yes it sounds like you need a pelvic or renal scan now to see if there’s any damage or abscesses/ lingering infections. There is no reason why your GP can’t chase this up.

@CloudsCanLookLikeSheep yeah we have debated going into savings to at least get some scans done on my bladder and uterus to just find out wtf is happening. Maybe I should look into urology consultants too. I just can’t bear the thought of this being my new normal, I will struggle to be a happy mother without constant pain relief and probably anti depressants. I’m sure to others I sound ott but honestly it’s so hard. I had 3rs degree year with DD1 and loads of pelvic rehab but this is already so much worse

Your reaction is understandable because you're in pain, but unfortunately it will mean medics take you less seriously (it shouldn't, but it does). Once you've taken initial advice, if you need to see someone else then try to stay calm. It would be helpful if you wrote down a factual timeline of what has happened to date and your current symptoms, then if you do feel upset you can give them that so they know everything that has happened.

@missyB1 that’s what I totally think - I just need to know what is happening inside, it could be something structural that needs certain treatment. It’s only been three months but the thought of this for life is just unbearable.

Thanks for reassurance

Yes it sounds like you need a pelvic or renal scan now to see if there’s any damage or abscesses/ lingering infections. There is no reason why your GP can’t chase this up

I agree, definitely go back to GP and insist on those checks.

I'd agree that if you want scans done quickly then private is the way to go. Unless there's any suggestion of cancer (which there's not, on what you've told us), then your scan will not be a priority and your GP cannot change the order in which people are seen.

@MrsMaiselsMuff I know, it’s so true. It’s just the sleep deprivation makes me so emotional too. I hate crying as feel so weak and pathetic and as you say - people don’t take you seriously when you cry (rightly or wrongly). So it’s a nightmare at the moment cos I so want to state my concerns rationally!

I won't defend the NHS OP. I have a permanent injury as a result of the NHS not doing what they should and now, it turns out so does my DH. I am going to seek legal advice on behalf of my DH. I could probably eventually get better from my injury but his is life limiting. Had we taken his consultants advice he would be dead now but we got a second opinion and this forced his local hospital to operate and save his life albeit shortened.

What are the chances of this? Really high because it's all going to rat shit if you ask me!

It's no surprise the amount of money being paid out in damages. Half the time the left hand doesn't know what the right hand is doing and it's a mess.

Have you already been referred for a scan? If so the GP is right that they can't make it happen faster, it is a hospital process.

You could try ringing the ultrasound department or urology secretaries for an idea of when your appointment might be?

I hope you feel better soon Op x

I have has ado surgery and the problem can be adhesions as well, causing pain (internal scar tissue)- kind of like a pulling pain. Mine is not c-section but similar scar after bowel surgery, plus an up/down scar as well...so that could be compounding your pain.

You poor thing If you can afford it then def go private. God knows how long you’d be waiting for a non-urgent scan on the NHS.

You’re doing a great job coping with all this plus a newborn. Stop Googling though because you’ll drive yourself insane.

The GP can send you for a scar or refer you back to the surgeons. I had a pelvic scan and it only took a couple of weeks for the appt (NHS)

I was also emotional and staying calm does help. I would recommend trying to see the same GP for continuity (not easy I know) and just following the treatment - stating symptoms e.g. side effects and follow up...if things don't settle down go back.

The problem is it if is adhesions, they can go in and cut them but they tend to come back again so it is mainly 'living with it'.

@justanothermother2 no advice but just wanted to say I'm so sorry you've had to experience all of this!

I'm allergic to ciprofloxacin and several other second line antibiotics, they make you feel really ill even without the allergy but after 7-10 day's do usually work. Dd has recurrent utis and had to take lots of doses last year, it happens, yes the catheter could have been the cause but not necessarily in the way you think, the bacteria could have been on your skin/outer tubes and got pushed in by the catheter. The wait for results before getting antibiotics is standard now, it's to avoid antibiotic resistance

Please don't feel like you are weak and pathetic. You have been through major surgery with significant complications and are looking after a newborn and a young child. Even just physically that's incredibly difficult even before you factor in the mental stress.

Please look to going private if you can. I' a staunch defender of the NHS but they are failing you in a way that private health care will help, and much faster. I'd also usually support the idea of anti depressants but it doesnt sound like you're depressed, more exhausted, ignored and in pain.