A lot of pain 4 weeks after ELCS - mws, obs/gynae docs / nurses, anyone, please help!

[Jules125]

Try to summarise this:

ELCS on 12 Nov with DD3 due to previous fulminating PE/ HELLP at 26 weeks (and stillbirth) with DD1 and previous transverse lie at term with DD2 (Dec 2010). DD3 great and very happy to have 2 lovely daughters after the trauma of my first pregnancy!

Seemed fine at time but started getting pain after 5 days then developed massive haematoma after 10 days (which quickly burst, relieving pain). Had AB and all seemed ok for a while. Definitely some infection - redness swelling at the time.

Last sunday / monday (so 3 weeks after ELCS) increasing pain, saw GP (same course of ab prescribed, looked infected again). By tuesday night v painful so went back wed am. GP wanted to send me to local maternity hospital (not where I delivered - NHS gave me choices due to my high risk status and I went for big teaching hospital in central London!) Local post-natal team refused to accept referral as over 3 weeks post-partum so I was no longer classed as an obs patient! (GP said ?local politics?). So I went to the same hospital A & E who eventually saw me and not surprisingly insisted I was an obs / gynae patient (and got me admitted and transferred to gynae ward). I wasn?t that happy (these delays meant I saw my GP at 10am but it was 1am the next morning before I was offered IV antibiotics on the ward ? in the meantime I was sitting / lying on a trolley in A & E in increasing pain offered nothing but paracetamol). Came out Friday lunchtime after 5 rounds of IV antibiotics. I found the abs helped with the pain but only for a few hours and started to get agonising again before next dose.

I am now back at home on oral clindamycin and metronidazole (same drugs I was receiving as IV in hospital). This am I seemed ok though wiped out. Pain got worse through the day (I have maxed out on co-drydamol / neurofen, and tramadol offered). I am awake because of pain ? baby is sleeping great!
My wound looks worse (red, sore, lifted, oozing, inflamed) in the middle to right side but its just above it on the left side where the pain is most intense. Docs have blamed constipation / post-operative pain for this (but I?m not constipated and didn?t have much post-operative pain until the last week!).
I am basically well, don?t have much fever and hopefully recovering from the infection but I feel no-one is really believing me about the pain I am in. I have had a vaginal delivery and previous CS so I do know about pain of previous childbirth. This is something else. I have been breastfeeding (but mostly pumping due to poor weight gain) but was also very sick on the IV ab and pumping output declined from 500ml to 100ml per day! So maybe keeping this going is not my top priority right now. What else can I take? I can?t look after my baby well (or my toddler at all).

Sorry for long rant. Has anyone experienced anything like this? What should I do? Will it settle if I just give it more time? I am reluctant to go back to same hospital as I didn?t feel well looked after there.

Thanks - feeling down and desperate. Can't imagine how people cope with chronic pain :-(

Not sure if relevant but I also have kidney disease thought to be due to reflux and family history of reflux / pyelonepritis. Passing urine is intensely painful deep in my pelvis (not the burning stinging pain of a UTI). I think they did dip my urine though but didn't culture / send off?

You say the wound is oozing - has anyone taken a swab & had it sent to the lab? With a different kind of infection, antibiotics I was given initially helped but no huge improvememt. When they found out what specifically was wrong & which antibiotics it was most responsive to, those new antibiotics finally got rid of the infection (well, after 2 rounds cos the infection was so well developed by then).

Thanks crunching...

Yes, a swab was taken on wed late afternoon. I don't know how fast results would come back? Maybe not that quickly?

Wound swabs usually take around 48 hours to come back.

Was the swab taken at your surgery or in hospital? If it was taken on a ward you may be able to phone them to ask for the results. It may be that you need different antibiotics.

Where exactly is the pain?
What is your wound looking like?
Do you think you may have a uti, it may be worth asking your gp to send off a sample for culture.
Is your, ahem, loss ok? (Not heavy, smelly or more than you would expect?)
Any signs of mastitis? It can make you feel very unwell?
Did the doctor take a vaginal swab or just a wound swab? A uterine infection can be extremely painful.

Sorry for the MAHOOSIVE list of questions.
I hope you feel much better very soon.

I have read your OP again and I'm wondering if you may have a fluid collection or abscess behind your wound.

You should not be having this level of pain 4 weeks post section.

I would go back to your gp tomorrow to be reviewed, and ask them to chase up your swab results.

I also think you need a urine sample and vaginal swab sending.

I am a midwife by the way.

Call the obstetrics reg on call for hospital you delivered in. You need a review. They will have access to your op notes which might help the diagnosis if it was a difficult op.
Hope you feel better soon op.

Hi thanks again Shaky.

Swab was taken on ward.
No-one has cultured for UTI yet
I had stopped bleeding after a few days post-cs but now have had really heavy gushing loss with a lot of discharge. Thought it was thrush but never seen this much with thrush. Pink white and soaking through towels quickly. No-one took a vaginal swab though I did mention this.

The wound is still open in a couple of places and pus coming out. Its painful all around my abdomen, lower back, but worst on the left hand side (my left) just above the scar.

GP did say he thought I might have an abcess?

Its still really painful - last night I took 2 co-drydamol, 1 neurofen and 2 tramadol in one go to try to get some sleep!

Shakey

if your still there - maybe you can shed some light for me - I am soo sorry to cut in op....

I had section 6 weeks ago and had alot of pain on right hand side of wound. It was severe in hospital and then calmed down but nagged after walking short distances etc.

After 4 weeks and alot of rest the pain would build up still holding me back - for instance if i contineued walking - the pain would almost be severe again.

i went back to hospital the consulatn pressed quite hard on the area - and it didnt hurt when she did it - however that night and next day it really flared up - however after that it went and seems to have gone. the area on the right was also always slightly raised which my community MW said was fluid probably. I had no fever etc.

Do you think perhaps it was also fluid? and her pressing on it - somehow helped the fluid to move?

I was wondering as no one was able to tell me - even an inkling of an idea of what it " might" have been....

OP - MY HOSPITAL told me I could refer myself back to them myself via DAY ASSESMENT UNIT - up to 6 weeks after discharge.

This means you should be able to go back to the hospital - which sounds like the best place for you.

Persoanlly i didnt want to be messing round with GP's who may know nothing about section wounds....

If I were you - I would be trying to be seen by the person who did your operation....

Jules are you on antibiotics? Sounds like post op infection and with your bleeding i'd be concerned about womb infection.please contact the ward for hospital who did the section and get review tomorrow with swabs of wound and down below. Hope this gets sorted soon for you.

OP did you get a transvaginal scan in gynae? I had a slow recovery from ELCS - was getting better, then got worse around 4 weeks, had a heavy bleed etc. Long story short after TV scan at 8weeks PN I had a large blood clot sitting in womb. Went in for D&C and found out last week that there were also retained products (placenta) there.

Around 4 weeks I also got blocked ducts from BFing and was a bit feverish etc. Didn't appear to have mastitis but was given ABs and felt a lot better generally. Basically I didn't have infection in boob, it was in womb and the breast ABs masked it by helping a bit but didn't get rid of it.

If you didn't get a TV scan you need to go back to gynae and demand one. Also can't believe they didn't take a vaginal swab. Threaten to complain, kick up a stink etc if necessary!

Get well soon

Hello again.

It really does sound like a uterine infection if you are flooding. There only needs to be a tiny amount of placenta or membrane left inside to cause infection.
And that is a serious amount of pain relief, not normal for 4 weeks post op. (I had a section too)
You have 3 options

1. contact you community midwife and ask them to come and see you, (they may well advise you to go to your gp but say that you would like to be seen by a midwife first). A midwife can assess your wound, take swabs, both wound and vaginal and palpate your abdomen to assess if there is any tenderness.
2. go to your gp, ask for urine sample culture, wound swab and vaginal swab and get the dr to look at your wound and prescribe any treatment
3. ring the postnatal ward of the hospital that you delivered at as they will have your hospital notes, although they will probably advise that you see your gp.

If I had spoken to you, and you were one of my patients, I would definitely come out to see you

Thanks again to everyone.

I did see GP late yesterday afternoon. The wound swab came back as non-hemolytic strep, resistant to erythromycin. [I am allergic to penicillin and was treated with 2 rounds of erythromycin first so maybe its just got really well set in now?]

They said the vaginal infection was probably BV (only asked, didn't examine) but didn't want to do anything else as I am taking metronidazole and clindomycin anyway.

I am seeing GP tomorrow am again so will ask for the UTI culture again. I've not had a scan.

The GP is quite sympathetic although everyone has been trying to persuade me this amount of pain is "normal" and CS is "so brutal" and I don't think it is [the pain; I do appreciate how major a CS is]. I have thought about complaining about the hospital as I think refusing to see me because I was over 3 weeks post-surgery and making me wait hours and hours in A & E was pretty mean. But its hard to get around to it with a toddler and newborn, even if I felt ok!

Thanks - still needing the same pain reflief though its best in the morning.

Jules you really need to get a scan by the sounds of things. I had abdomen palpated etc but had a clot sitting there. A TV scan will immediately show if anything is left in your uterus. No matter how experienced a GP / MW you see they don't have X-Ray eyes! Can't believe you haven't been scanned tbh.

Thanks. I did see GP today and wound is looking a bit better (less swollen) but my pain hasn't really improved and is severe afternoons/ evening / nights. They want to repeat blood tests on friday and repeated wound swab today. I also get shivery / shaky at times though no fever and don't really feel ill otherwise.

Suggested the pain killers themselves might be causing abdominal pain? So I'm trying to not take any now.

I do feel the gynae ward were very dismissive of pain - not callous but kind of "what do you expect, you've had a c section / baby" / its a big wound etc".

I've also stopped being able to pump (was doing this to top up baby's slow growth - suddenly went from 500ml to 100ml per day (despite my best efforts with keep trying to pump and putting baby [and even toddler- because she is really good at it and still willing if offered! ] to breast regularly.

Jules

Can you call PALS - Patient Adivsory Liason Service - when I have called them they are pretty good - explain your circs - in loads of pain - no one listening or and much more importantly - INVESTIGATING the reasons behind your pain.

They are not " ruling " things out by doing investigations.

I am amazed you cant get back to see the consultant who did the op.

When I was discharged a lady told me I could go back and refer myself up to 6 weeks after the op.

I lost the paper or number she gave me - as I was swamped with leafletts and papers from bounty - health visitor - hospital etc...

So I called the ward - and spoke to a lady who was ADAMANT i needed to see my GP.

She wasnt listenoing to me - I was saying to her " OK - so does the discharge lady not know her job then!! why would she tell me i can refer myself if i cant"

We had a long " conversation" and I had to ask several times - in the nicest possible way to speak to someone else.

THREE people later I finally got to someone who refered me to the day assesment unit and an appointment was made THE NEXT DAY to see the person who actually did my op.

I dont know who at the hospital you are speaking too - but alot of the time - the left hand doesnt know what the right is doing.

Do you know who did you op, are you able to call them or thier secretary directly?

My GP was beyond useless over my pain and said the same thing " your lukcy to be up right - most ladies cant even stand up straight after c section"

In the hospital they said the same thing - "what do you expect".

No one was listening to me - that i did something and was in alot of pain - ie it wasnt the operation - i did something soon after - and it was that - that was causing the pain!! I Could have ripped open all my internal stiches - they couldnt care less!! They just kept saying the same thing.

This scares me.

They said the same thing to a friend who had retained placenta - heomraaged then ended up with blood posining and on a life support machine with all her organs shutting down.

My dad had heart surgery - had to be re opened - and back on the ward he complained of pain - again they all said to him - " what do you expect you have had major surgery and been opened up twice."

He had to keep on and on and on - they eventually said " ok - we will take you down to the x ray then"

he said " No you wont - I cant even do that I am in too much pain"

EVENTUALLY they scanned him or x rayed him and found out his sternam wasnt sewn up properly!!! It was flapping agaisnt his organs!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

He said you have to rememeber people who work in hospitals hear people moan about pain.

You know your body - you know something isnt right you must act swiflty.

Jules have you followed up on this? I'm a bit worried about you! If you continue feeling so unwell PLEASE demand a transvaginal scan. Even the bit about your milk supply is worrying me as I was getting the blocked ducts and since D&C have had none. Apparently it's quite common for retained products to cause issues with milk supply because of the effect placenta has on hormones (a v knowledgable lady on another thread I started in BFing was writing about this).

And FWIW I have finally stopped bleeding and feel totally my old self again.

Am just waiting to be readmitted Angelico. They agree (repeat bloods) that nothing has got better - in fact all markers of infection have worsened (I could have preidcted that on monday). The odd thing is I've already have very powerful and appropriate abs that have not helped.

Hopefully I will be out in a few days and will update (thanks to everyone).

I knew it! Well done for persevering, I knew you shouldn't be in that amount of pain and needing that level of analgesia.

I really hope they get you sorted quickly and that you feel much better soon.

Make sure you get a scan, you may need IV antibiotics too, if oral ones haven't been effective.

Can you take the baby in with you, so you can maintain the breastfeeding?

If a scan shows retained products, you may need a D & C.

Good luck, please let us know how you get on (if you feel up to it of course).

Thinking of you

I have to say - retained products was a huge fear of mine with natural childbirth - as i know of lots of cases where women have been at deaths door with it - i was told that they really mop you up and clean your out with a section as they can see its all empty - how on earth can stuff be left in????

Thanks. I am now back home today and feeling better, no severe pain any longer. I had a wound infection, uterine infection and UTI. They treated the first two but didn't check for the UTI initially - this just got worse and worse and I think was what was causing me the pain (felt better after 36 hours on trimethoprim). I didn't even need all the IV drugs I've been given, just trimethoprim. Now just taking oral metronidazole and trimethoprim for another week.

They did scan me and no retained products found.

GP urged me to complain - the first time I was hospitalised they discharged me ignoring the fact that I'd been writhing in agony, complaining of pain, and telling them I felt no better. They didn't even check blood tests results to see if the infection was improving. I felt I was just being dismissed as neurotic and kept being told post-operative pain was "normal". So it just got worse. I think there is a general "mean" attitude to women being told to put up with childbirth pain. Bet that wouldn't have happened after any other operation.

Sadly its put paid to breastfeeding (which admittedly I was struggling with anyway). I was pumping quite a lot before but the milk just disappeared despite me keeping trying with the pump. They just told me I'd been too ill and that had ceased production and best to use formula now. I don't feel guilty but sad as I did bf my older DD for over a year.

Jules

SOOOOO glad they have got to the bottom of it - dont know if you saw earlier but i had a friend who ended up on life support after being ignored with reatined products and then got septisemia etc...every organ was shutting down. Its really serious and I am amazed but but not amazed at how they treated you.

Another woman may not be so lucky and loose her life because they havant checked her.

I was in pain too - as said earlier and I too was dimissed. My pain has gone now though but it took weeks....

My dad had op and was in pain after it turned out - after he kicked up a stink as only he can.....that they hadnt sewn him up properly - and had to be re done - as stuff was flapping about inside.

People do complain of pain in hospital - its par for the course but that doesnt mean they shouldnt check you out esp after childbirth!!

glad your on the mend now - thankfully in time for xmas,

Please Please complain - people who are worth thier salt will want to know when they have over looked stufff because they will want to cure people and for people to be well!

( i know you had no retained products but its all infection related)