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.

@Toomuchtrouble4me she will not get scanned in A&E or any quicker, if her Temp is normal and her obs fine, all they will do is another dipstick, possible bloods, but advise to drink plenty and keep taking the prescribed antibiotics. A&E is for Accidents and Emergency, life/death situations, not for queue jumping to get their scan quicker.

It only took around a couple of weeks for an ultrasound here (SW) or the GPs can send people in if concerned. It need not take that long. I like benenden healthcare which work with NHS and send you private if it is more than a few weeks late. Very cheap as well

This link might be useful in relation to you hyper mobility, pregnancy birth and healing.
www.facebook.com/111251562248518/posts/3133416343365343/

OP is in Scotland and This is my is England.

I think you would be justified in making a complaint to the hospital (or possibly try PALS first) and GP. IME it does ensure you get better attention and treatment, which you deserve. What you are experiencing is not normal after a CS. You have my sympathy, even a simple UTI is hellish without everything else.

@Toomuchtrouble4me she will not get scanned in A&E or any quicker, if her Temp is normal and her obs fine, all they will do is another dipstick, possible bloods, but advise to drink plenty and keep taking the prescribed antibiotics. A&E is for Accidents and Emergency, life/death situations, not for queue jumping to get their scan quicker

Well - in my experience - twice, she will. I went with gastric pains, obs normal, bloods normal, had CT scans upper and lower stomach, I wasn’t admitted but was thoroughly scanned. It was gallstones.
My friend did the same with a different stomach issue - pain the only symptom and she also had full scans, they admitted her for 2 hrs until they got her results - which were clear - and then she left.
Perhaps you have crap hospitals near you but at mine if you go to A&E with new or changed pain they DO scan and they don’t send you home until they’ve found the issue.
I’ve also had instant xrays through a&e, not life threatening but son had been limping for days so we went in after school and they x-rayed.
Op is in a great deal of pain and has had suicidal thoughts - how much of an emergency do you want.
You call it queue jumping - I call it ensuring she gets the care she deserves.
If your local hospital would send you home if you arrive doubled over in pain without finding out why then you have a crap hospital.
Go to A&E op. Are you in London?

Sorry op - just seen that you are in Scotland. My local Hosp might be a bit of a trek then!
Do update after your appt if that is what you decide to do.

Thanks @toomuchtrouble4me, I’m actually in England, not sure why it says I’m in Scotland! Lol! Will check that out. Will update on return, thank you. I’m hoping that since I’m now having weird spotting they’ll take me a bit more seriously too. It’s not just uti symptoms it’s the whole package (hence why I chose to ignore the lady saying I’m unreasonable and it’s just protocol, there’s a lot going on here not just a normal uti) xx

Thanks @Perunatop I couldn’t believe this was what all my friends dealt with after c sections but they all say they were fine within a few weeks, certainly not still struggling to function after 12. It’s very very hard to look after a baby like this.

Ask if it could be sepsis or a dangerous infection and if you’re not happy with this GP go to A&E -but you must say it is worse than before and now that you have spotting I really think that you need to be seen to quickly! It’s not queue jumping - this is an emergency. Good luck.

Hi all just to update, out of hours gp was lovely and reassuring. she said def stop taking ciprofloxacin as the sample actually came back clear this time! (not that anyone told me) and I’m clearly having awful side effects.

She’s concerned about the ongoing c section pain and bladder issues, particularly in absence of a confirmed ongoing uti and while it could all ‘just’ be nerve damage it could be that I’m just very slow to heal and the uti symptoms could well be catheter trauma. So she agreed with most women on here that I need a pelvic and renal scan asap. But obviously she couldn’t do anything herself.

She’s recommended I take some lactulose as well which makes sense, take as much pressure off my internals as poss.

So while on one hand I feel ashamed and embarrassed on the other I feel relieved and also like there clearly is something not right with c section recovery and maybe the uti I had just exacerbated everything. Maybe it’s interstitial cystitis as someone mentioned. Just need to cope with the symptoms until I get a scan to see what’s going on.

I really appreciate everyone’s time today I can’t tell you how broken I was. The antibiotic was so so horrible I could hardly function for my family beyond holding the baby for a while at a time. The ongoing pain and not knowing what it is really wears you down and the sleep deprivation and care of a small baby on top is a recipe for one broken lady. I just needed some sensible advice and also a bit of validation I guess. I haven’t received great care, I do need to demand some scans but hopefully I’m done with strong antibiotic side effects now. Hope everyone has a lovely weekend xx

Google your local continence service, most take self referral. I'm an ex continence nurse and our service sees people with these symptoms and will refer on to urology or gynaecology. There is little medical evidence in this but go to boots and get some female probiotic. They are expensive but some of my patients swear by them. Also if you are lacking vaginal mucus then this can cause discomfort. I'm not saying these will cure you but might take the edge off.

Might be worth sending another urine sample to the lab 24hrs after finishing these antibiotics, just to check.

Cut out all caffeine, black current squash (again no evidence but lots find it works) any citrus juice/squash, green tea and all fizzy.

These do tend to upset our bladders.
Urinary symptoms can be really hard to diagnose and treat. I really hope you feel better soon.

It may be best to see your usual GP who could arrange a scan then, hope you feel better soon.

Glad you feel you were listened to and have a plan in place

I'm glad you got someone sympathetic this time (a woman interestingly!) OP. I hope you get your scan soon. I'm glad you're off the cipro, hopefully you feela little better.

I wont defend the NHS we have lost a family member due to their negligence and can 99.9% guarantee they would not have died if they had not had to follow NHS protocol of constant waiting for appointments and being passed from pillar to post. You get what you pay for & that says it all x

I think you need to chase the fuckers (you shouldn't need to but needs must) to get the scans.
God bless you. It's almost impossible having a newborn never mind with all your issues.
I genuinely hope that you get a resolution asap. Scream and wail (I cry in front of my elderly male GP which gets him prescribing whatever I demand just to shut me up lol). Don't be afraid to exaggerate the symptoms. My aunt ( a nurse) told me to do that when I had been vomiting for 9 months and weighed 6 stone. She told me to describe my symptoms as the worst they've been, not as they are now.

It's best to try not to see out of hours type docs really as they can't access your full records / order scans and things...unless no other option. Better to see your usual GPs who can do stuff like that

A few years back I needed some diagnostics done but the local hospital waiting time was 4 months. My GP suggested that if there are other hospitals I could get to (in other towns), I should call them to check waiting times and then he'll refer me to the shortest one. Ended up going to a city 2h away, but was seen within a month. Is that something you could try?

How’s it going OP?

@Luckybe40 hey, I am feeling much better off the drugs and realise my utter burnout wasn’t helping anything. I still have very strange feelings around my entire abdomen and gynaecological area, like about to get my period (I’m not)!and needing a wee constantly, stinging scar tissue and urethra and a general feeling if bloating/fullness. I’m fairly constipated and wonder (am terrified) if I’m slightly prolapsing or something. But I got checked a few weeks ago and they said I just have normal laxity. The nausea and back pain also baffles me. But have scans booked for early October and have to just wait and see now and keep a diary of symptoms I think. I just hope I don’t feel like this forever as it affecting my quality of life tbh. I lost 2 years to a back injury that ended in surgery and can’t bear to be in chronic pain and immobile again, it’s hell. Thank you for checking xx

You know OP, this might be completely different but I remember with DD I had significant back pain particularly for the first 3 months or so PP when I was BF and then after/whilst I stopped BF I had intermittent nausea for a month or so. Tbqh DD is 15 months and I've struggled with back pain since pregnancy but recently had scan and saw physio and she said there's nothing 'wrong' I just need to build up strength especially core strength. If you're not very physically active atm - which you won't be, in your situation! - that could very well explain your back pain. The nausea I don't know but I think there can be a hormonal element to nausea, there definitely is for me. It cleared up again once I had completely done with the BF for awhile. Also nausea can be caused by exhaustion and it sounds like you are probs exhausted! Obviously I don't know and I'm not trying to deter you from investigating your symptoms at all, def think you should get all the medical attention you need and investigations etc but some of the symptoms may well just be relatively benign and resolve over time, you're still early days yet really at 12 weeks x

Thanks @MeadowHay and I’ve also wondered if some of this is just normal mum weakness but with it being DD2 I just don’t get to rest at all. I really am struggling to take care of myself and DH is doing what he can but it's just different. Hopefully I’ll feel better at some point and/or get some kind of help or advice from the docs. Thanks x

I haven't read the full thread- just enough to see that you're really going through it.
Have had a slight bit of experience with this as DD had uti symptoms but no uti showing on dipstck etc.
Did a bit of research and it seems as though 20% or so don't show up according to latest research. We eventually got antibiotics, and symptoms cleared within a couple of days!
I just wanted to say, there is a specialist based in London who deals with this- uti symptoms and no confirmed uti- but can't remember his name but maybe worth a google if things don't get better.

@justanothermother2 I hope you are fully recovered and got to the bottom of this! I realise it is an old thread, but suspect a chronic enterococcus uti myself (dip tests negative) and wanted to ask you if you got help and treatment eventually, and got to the bottom of this? Hope you don't mind. x