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.

No advice but wanted to say you've had a terrible time and I'm really sorry you're going through this @justanothermother2

You poor thing. You’re not overreacting at all. Your story resonates with me as I had an elcs with dd2 after third degree tears and bad aftercare with dd1. Then regretted it so much. But now u think although it doesn’t seem likely it could have been even worse with another normal delivery. We will never know so please don’t beat yourself up, you did what you thought was best with the information that you had at the time.

I had lots of complications from the c-section and the doctors just fobbed me off. I had to go privately to get sorted in the end just so someone would listen and nearly 4 years on I still have the condition I was left with but I can manage it and get on with my life. You will get there but you need to keep going back until you’re happy. If you don’t think you’re reacting well to this antibiotic please stop taking it and ask for an alternative.

Be kind to yourself, get help as much as you can, rest as much as you can and use the tv for your older one if you need to. Put yourself first or your kids will be the ones to suffer anyway. Most likely, by Christmas this will all be a bad memory but I know how awful it is when you can’t see the light at the end of the tunnel.

Sorry to hear you are having a rough time. I would definitely push for a scan - an out of hours GP probably won’t be able to request this, would be your usual DR but another check over and fresh eyes is a good place to start.
It may help in the meantime to avoid bladder irritants as may not help with the infection as such but may help to reduce symptoms a bit. Things like caffeine, fizzy drinks, artificial sweeteners etc
Hope you feel better soon

Thanks for all recent comments - just a little alarmed as have started lightly bleeding from vagina, def not period as have had two and last one ended five days ago. Think I’ll call 111 again. It’s def not the urine, which is weird. But maybe ties in with the scar pain.

My emergency doc appt is at 4.15 this afternoon. I will steel myself not to cry and will lay on thick as you all suggest, the reality is I have constipation and stabbing pains all over my back and stomach, burning sensation constantly in my pelvic area, a stinging bright red scar 3 months after surgery, kidney pain and urine frequency and pressure, and now spotting, and I really need a pelvic and renal scab to rule out adhesions or wider infection or something structurally wrong.

Fingers crossed they’ll listen and if it gets any worse I will go to a&e but doubt they’d prioritise me right now 😬

@thisisthetime gosh that sounds v similar. I was still 50/50 even going in to theatre and right now wish I’d screamed stop and just pushed her out. Obviously don’t know what would’ve happened if I’d gone vaginally again and could have ended up with elcs anyway, but hard not to live in regret rn.

Did you have similar symptoms to me? Or something different? Sorry to hear it’s still going on. Sounds like sadly we may have to pay for a private scan and consultation to get taken seriously here.

If it helps write a note of it all to show them, in case you forget anything. I hope it all goes OK.

No, my symptoms were completely different to yours. My bowels stopped working which they eventually discovered and treated them I had other complications that were longer lasting.

If you do go privately, you can sometimes ask to be added to the consultant’s nhs list. So my first appointment was private and my treatment plan started then I went back to him under the NHS. Not sure if this is the case all the time though.

A friend of a friend had a normal vaginal delivery and now suffers with a bladder disorder which leaves her in a lot of pain. I don’t know lots of details about it but she didn’t have a c section and still had complications. It’s so hard to live with the what ifs though.

The adhesions can occur after e.g. appendix surgery, any surgery in fact, try not to focus on the last and needing surgery, it can happen to anyone.

Op

• your appt at 4.15, at best will get you a referral - more waiting. This is NOT NORMAL! Please go to a&e.

My emergency doc appt is at 4.15 this afternoon. I will steel myself not to cry and will lay on thick as you all suggest

^^

DO IT.

Stand your ground. Imagine you're in a courtroom wearing a power suit.

I think you've got every right to feel angry with the NHS. You've been badly let down. We can all feel grateful for the NHS without thinking that it's not overstretched and flawed and full of humans who can and do make mistakes.

You poor thing, it’s horrible when you know you aren’t well and nobody takes you seriously. You sound like physical pain aside, it might benefit from you talking to someone. It is not a normal thought to feel suicidal over having a UTI. Please reach out to someone.

@thisisthetime god that’s awful I’m so sorry. And yes this stuff does happen with vaginal deliveries too so I guess no good way to get babies out. I had actually had a lovely birth with DD1 it’s just they didn’t see me back together. Like, at all. And I have particularly soft tissue (hypermobile) that really needs support and I basically never healed properly. I paid for months of private pf physio to get as close to normal as possible. I never intended to have any more kids as a result but felt so good a year ago I thought I could handle it....!

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!

Spot on!

@Goodlookingcreature ahh yeah the suicidal feelings were a combination of not healing from a section and being in excruciating pain round the clock for five weeks, failing once again to breastfeed and feeling doubly guilty whilst battling mastitis/thrush and a baby with oral thrush feeling guilty about that, having a 5 yr old DD at home during school hols struggling adjust to her new sister and mummy not having the energy to play with her at all, DH exhausted himself commuting 90 min round trip each day on motorway then coming home to try and pick up the pieces of cab evening. Then the nights, having to try and sit up gently to not tear my stitching and make up a bottle whilst the baby screams out for food, unable to hold her whilst I do, stressed she will wake her sister and feeling sad we aren’t just breastfeeding pain free like others can, and thats happening every 1-2 hours all night. So utterly sleep deprived.
And then on top of that the constant burning and peeing and pelvic pain of a uti. Kinda tipped me into ‘I want this to end’ mode.

@Goodlookingcreature but it was fleeting thoughts. Just despair really. More than anything it was a musing over if I was dead I could sleep and not be in pain. But I would never ever do that to my girls. Ever.
Will def call Samaritans or someone if it does get like that again xx

Hi op
So sorry you are having this
Have a look at interstitial cystitis
It rang a bell for me when I read your op.
Also has your go examined you, a prolapse can sometimes cause these type of symptoms.

Best of luck with your appt and I agree if you can go private for scans that is probably your best bet right now. Unfortunately the NHS is massively underfunded and understaffed and it can take weeks - even months - for routine scans. The doctors should know through prior experience roughly how long referrals in your area usually take though, worth asking them if you're waiting. For example I was on the cusp of needing a dermotology referral recently - tried last available GP med which thankfully worked, but the GP was up-front with me that in our area derm referrals usually take around 12 months for an appt on the NHS - I had private medical insurance through work at that point which he was relieved about and strongly recommended. Luckily the medication worked and I didn't need referring, but if I had done, and if I didn't have the insurance - which I don't anymore since changing jobs - idk what I would have done as I was in sooo much pain with my skin. Probably would have had to borrow money off my DPs to go private.

Can I just say once you have finally gotten to the bottom of the physical stuff, I think you would really benefit from psychological support. You have been through A LOT recently and it's no wonder you are struggling. Even when your pain etc is gone or under control you might still benefit from a listening ear and someone to help you process everything you've been through. I'm particularly thinking of your 'what if' type thing of wishing you hadn't had a section now. The thing is, at this juncture for all you know these problems could be sorted within the next few weeks/months whereas if you had proceeded with a vaginal birth you could have ended up permnanelty incontinent, for example. I mean, nobody knows what will/could have happened, but it's just an example. When things seem to be going badly it's udnerstandable to regret your decision but things could potentially have been worse if you took the other option and then you'd regret that decision! Birth is never easy and for some of us it seems to be harder/more complicated than for others unfortunately. I have a friend who had an EMCS with her first and then pushed and pushed for a VBAC against medical advice. She had her VBAC but it was forceps that resulted in a 3rd degree tear and she now suffers from minor stress incontinence despite PF physio which can only really detioriate in the absence of surgery. She now wishes she took the elective! I had a ventouse delivery and my PF is weak now and I occasionally have stress incontinence too and I keep thinking I wished I had refused consent for it and demanded a section! But maybe that would have been even worse! There's no way to know and the 'what ifs' just don't help at all.

The NHS is appalling at this type of thing, so sorry OP. No routine cultures, still using dipsticks, everything done so slowly...in my husband's eastern european country, they always do cultures for antibiotics for UTI suspected or other infections, and the results are available by computer two or three hours after the lab identifies the problem- so some things, the same day.

I've thought for a long time that the over use of generic antibiotics, although you weren't even offered those initially, is bizarre when they are exhorting us not to use them at all.

Creaking system, the people inside it are fantastic, but they are jumping out in droves- who wants to deal with angry frustrated patients all the time. It also would have cost a lot more to have 10 weeks of repeat visits with different professionals, than if the first GP had done a culture.

@MeadowHay sorry about you and your friend, I also have the damage from vaginal too first time round and def empathise and know the major issues we can have. Just feel like at the mo I’m having similar issues to vaginal delivery but also the scar tissue issues as well. I will def seek some counselling when I am on top of the pain as clearly need to release some negative thoughts. Hopefully the what ifs will fade with time if I can sort the pain out x

@Nearlyalmost50 exactly my thinking - the short term cost cutting never works and just drags things out tenfold in terms of overall cost to the NHS and the patient!! Madness

Yabu, they followed protocol accordingly for UTI's. Stop doing your own research, you were prescribed the appropriate treatment in accordance of the NHS Guidelines. You are most certainly not on any chemo drugs, but on strong Antibiotics.

I am so sorry you are going through this. If I had anything consoling to say it would be this: If they had treated this correctly in the first place, they probably would have tried to knock it out with cipro. So you would have gotten the same nasty medicine all along.

My DH had a terrible time getting a diagnosis with the NHS, 5 visits to the doctor were a waste of time.

Paid for a private consultation, was correctly diagnosed in 4 minutes, he sat sobbing with relief, consultant fast tracked him through scans on NHS and saw him at the local hospital in his NHS capacity.

If you get fobbed off OP, just pay, you have to get your life back. Good luck.

If you don’t get anywhere with your GP there is a very good ultrasound clinic called ‘This Is My’ they are based around the country and are consultant lead (although you will pay more for an appointment with a consultant) or you can see a Somographer there. They are brilliant.