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.

I’m sure to others I sound ott but honestly it’s so hard

No you don't. You sound at the end of your tether because of not being listened to.

Thanks to everyone for your replies and suggestions, I’ve never posted before as worried I’d be told to shut up and go away but just a few words of reassurance really helps 😭

I got a call back from 111 and the doc agreed with a lot of you that I should keep taking the cipro but also that something isn’t right and I should feel better by now (he said both in terms of the uti and the section) and I will see an out of hours doctor later. I’m guessing they’ll check my wee again 🤣.

I think the general consensus is push for a scan or pay for a private one. Makes a lot of sense. Will get onto that on Monday. And will stop googling.

Thanks to everyone who made me feel less of a weakling too. Feeling bad about yourself doesn’t help any of this eh.

Xx

It’s not the NHS it’s medical professionals within that that are not taking you seriously and not giving you the right care

It sounds like an infection that is not clearing and needs proper antibiotics unfortunately due to the infection you need heavy duty antibiotics which can have side effects yours need looking at though

@Quartz2208 you’re right - it’s not the NHS I should’ve said let down by certain doctors/nurses not the NHS as a whole.

Yep so all you can do is keep pushing until you find one that will listen. Hopefully your doctor is now because this doesn’t sound right at all

@Bobbiepin thank you, and yeah I even have a history of anti depressants and I’m still like, this isn’t depression this is exhaustion and pain. Yes I feel depressed intermittently but I know if I take enough pain relief I feel better because the pain goes away but equally I don’t want to take pain killers everyday. The doctors definitely lean towards me being ‘wobbly’ post partum and tilt their head in sympathy but I really think this is 70% ongoing pain 20% sleep deprivation and maybe 10% depressive thoughts.

I have a lateral scar from above belly button almost to pubic bone. If this doesn’t resolve and you discover it is to do with the c section scar, try a Bowen therapist. Especially one, who has training on treating scars. Unlike undamaged skin, it is my understanding scar tissue fibres lay down in one uniform direction, which is what causes it to be tight and thicken / harden. The idea of scar work is to break the micro adhesions between the fibres down and let them resettle in a more natural way. This then makes the scar soft and flexible. Bowen is also supposed to help with adhesions.

I used ciproflaxin a lot due to recurrent utis. It is generally used when other less strong antibiotics. It is a strong antibiotic and caution is required to avoid potential resistance building up in the body. As for the side affects, all drugs have them. Some are pretty scary when you read up about them.

A pelvic scan showed my uterus was retroverted, 'tied back by adhesions' GP said when she saw it.

I would first go back and ask GP for a scan and then see how that goes. Hope you feel a bit better soon.

www.chronicutiinfo.com/intro-key-info/treatment-uk-specialists/
I think you need to see someone who knows about UTI in women.
Could you see Prof Malone Lee or Mr Ased Ali?

Also, if any pain gets very severe sometimes adhesions can cause bowel obstructions, this happened to me like this lady here. It is rare but to make others aware also.

I also had several metres of bowel removed which if why now have the open scar.

www.mirror.co.uk/3am/celebrity-news/sarah-cawood-reveals-c-section-8398583

I can’t believe that they didn’t scan your kidneys whilst you were in hospital, I had high bp and a uti after my c section and the doctors arranged a kidney/ bladder scan whilst I was in hospital.

@Bobbiepin ugh the aftercare in the hospital was horrendous. Am glad you had better care. Nobody even told me to keep the stockings on and my leg started swelling up - was terrifying. I think they assume we have all had loads of surgery and know everything but I had no idea and no guidance/prep - I didn’t even know I would have a catheter in until just before they did it!! And it was elective not emergency!

You are NOT weak and pathetic.

Hate to bring this into it, but if you were a guy they'd have sorted it by now. But because its a post birth injury it's just written off.

I'm so sick of hearing about these awful NHS experiences : this is healthcare that we PAY for through taxes - dispicable. It should be top notch.

Just been reading about adhesions - literally nobody at any point mentioned these or told me to massage my scar!

OP,
So sorry you are having such a bad time of it. This will not be your new normal. You will get better.
I read you have an after hours appt today...see if your DH or someone can go with you to calmly corroborate what you tell the GP.
I hate saying this, but when you have a history of mental illness (you mentioned you’ve been on anti-depressants), and then if you come across as even mildly emotional- many doctors will not take you seriously or assume you are exaggerating. I face this constantly because I have a history or psychosis (and take anti-psychotics), so I always take my DH with me for anything physical but “invisible” if ykwim?

@managedmis RIGHT?! I honestly don’t believe men would get treated like this. I really don’t. And I’m not an angry feminist it’s just facts. Women just don’t get taken seriously!

If I were you I would present at A and E, tell them that the pain has escalated tenfold in the last few hours - lay it in thick and you will get all the tests you need done there and then. You can’t say it’s ongoing - you MUST say that it’s gotten much worse, unbearable, and you’ll get your scans.
Or go private.
I had 4 c-sections, pretty much pain free within 4 days. It was never bad pain.
You need to take control here.

@DoctorAllcome yep you are right and even though my mental illness history was PTSD induced and I’ve been off any pills for years since trauma therapy (horrible) I do feel a bit stigmatised I must admit

@toomuchtrouble4me four DAYS? Wow.
Yeah I am genuinely not ok 12 weeks later.

Also, your birthing hospital sounds pretty crap - do you have an alternative?

Have you been to the emergency doctor?

Just go to A&E, really. Lay it on thick and tell them it’s getting worse by the hour.
You could have all your scans done by tonight - on the NHS.

Bowel obstructions are rare but can happen and another one adhesions can do is twist on the ovaries / tubes also...yes if it is really bad you could go to A and E and they should do scans etc if admitted.

Foe some reasons doctors and surgeons can be oddly reticent to talk about adhesions. Not sure why.