At my wits end with kidney pain - don't know what to do anymore.

[ShalomToYouJackie]

I'm 13+5 weeks pregnant, I've had blood in my urine on and off for 6-7 weeks now. GP tested for infection and it was negative. A few weeks later I had a dull ache in my lower back on the right hand side which got increasingly worse until I couldn't stand. I was throwing up from the pain and went to a+e. Pain suddenly completely stopped. My urine and bloods came back fine. They suspected kidney stones but an ultrasound scan didn't pick any up. Same thing happened a week later and they sent me home and said everything was fine and to drink water and and take paracetamol.

Last week I started weeing blood again but this time there were small blood clots in my urine too. I also constantly felt like I needed a wee. I spoke to my GP who did another urine sample which again came back negative for infection. They called the urology department at my hospital and I was seen the next day. Blood and urine came back clear again. Had another US of kidneys which showed no stones and that my kidney was draining fine and looked fine. Told to drink water and take paracetamol and they'll do a CT scan in June after the baby has been born. They give me antiobiotics just incase it was an infection which I've been taking.

I've now had worsening pain for nearly 48 hours in the same area and again am at the point where I can hardly walk, I'm retching from the pain. Paracetamol and hot water bottle are doing nothing. I'm drinking about 3 litres or more of water a day. It's really unbearable and I don't know what to do, I keep just getting told I'm fine and to drink water. What would you do in this situation?

Hope your feeling better soon op I had a maybe 5 hour operation at 22 weeks pregnant under a general aneastetic and all though recovery was rough my son survived the op just a heads up before a general aneasteitc during pregnancy I had to sign a form that said one of the risks was spontaneous abortion which was a shock to read hope this is all over for you soon

Thanks for asking after me. It's been a bit of a nightmare, I was told yesterday actually the op was too risky, there was a chance of the anaesthetic affecting blood supply to the baby, quite a big chance of infection from the operation which could cause miscarriage and a lot of other factors that could also cause miscarriage so it was decided to stay with the nephrostomy until I've given birth and I was discharged.

However I got home and the pain suddenly got really unbearable, I couldn't sit on my bed or use the toilet and I suddenly couldn't walk, my eyesight went weird and I started seeing black lines everywhere and was vomiting so DP had to call a bloody ambulance last night and I'm back in hospital on the same ward again waiting to see a urologist today. I thought this was a fairly minor procedure but I need help getting to the bathroom and getting dressed etc and really don't feel ready to be at home. Not sure what's caused the pain to become much worse, especially when I'm on so many painkillers. Hopefully will find out today

Sending you love. I hope it gets sorted soon

Sounds like you need to be on strong antibiotics. Hope you get the right treatment.

Hope they get to the bottom of it and it can be fixed easily.

Good luck 💐

Oh op this sounds awful you poor thing. Is it a renal specialist who deals with this kind of thing? I’m not great with general medical side but if so the renal consultant and obs & gynae consultant need to communicate and come up with a clear plan, sounds like it changes every day thinking of you

@Levatrice it's the Urologists who I've been under. They all met up and discussed and saw me and said the operation was a bad idea.

However I came back on Saturday and they said yesterday morning if the pain was really bad then I could have the op and " if anything happens to your foetus then at least you can say you gave it a good go managing the pain" 🙁

I'm not going to have the op so just going to have to manage. Had a really bad night as the nurse didn't put my leg bag on properly and I woke up at 2am lying in a pool of my own wee as the bag was leaking. Had a shower and asked her to change the urostomy bag as that was soaked and she changed it and didn't put the new one on properly so woke up at 3am with the bag off and the hole to my kidney exposed and leaking wee. Had another shower then the leg bag was put on incorrectly again and woke at 5:30am covered in wee again. It was then I realised they weren't using the adapter needed to connect the urostomy bag to the leg bag.

So really fed up this morning, all my clothes are soaked in wee, I've got no clean clothes, they've got me nil by mouth even though I've said I'm not having the operation and everything is just a bit crap 😔

Sorry that had paragraphs when I typed it out

God OP you poor thing. What’s their plan now? Surely you can’t have that level of pain til next May?!

Ah ok yes wasn’t really sure! Oh god what a shame... hope you get some answers on morning ward round x

@Inglouriusbasterd that's what my mum has been saying, that surely they can't expect me to put up with this but unfortunately that's what I'm having to do. I'm dreading how much worse it'll be when I'm heavily pregnant. Really hoping that the pain will settle soon.

I think they might think I'm overreacting about the pain. I've had codeine, paracetamol and morphine and it's barely doing anything so I'm just taking paracetamol for now as the others make me feel sick and a bit out of it.

Oh my goodness @ShalomToYouJackie you poor poor thing! What you are going through is beyond belief! I hadn’t seen your post until today and this is because I was woken in the night with terrible kidney pain which is getting worse.
I hope they do something today to help you feel a lot more comfortable. Sending a hand hold.

Have you though of asking for a second opinion at another hospital. It spinds loke urology at the hospital you are at dont know their arse from their ear given how long they took to work out what the problem was to start with and now a supposedly easy surgery has turned into a shit show. Im not sure I would be putting much faith in them going forward. You are completely entitled to a second opinion and / or a case review by a separate set of doctors. Can you google centers of excellence for urology?

@LittleTiger007

Oh my goodness *@ShalomToYouJackie* you poor poor thing! What you are going through is beyond belief! I hadn’t seen your post until today and this is because I was woken in the night with terrible kidney pain which is getting worse. I hope they do something today to help you feel a lot more comfortable. Sending a hand hold.

Thank you, unfortunately I don't think they're going to do anything else. I'm limited on the painkillers i'm allowed. I can't even sit on the loo properly or walk properly but nobody seems bothered. Thanks for your lovely message x

I'm so sorry that you are going through this, it sounds awful 😔

I know that the risks of surgery are scary but the baby would also be impacted by being gestated until full term while you are in so much pain.

Is there any way to get a second opinion?

Also I would complain about the care concerning your catheter. Maybe speak to PALS

Oh @ShalomToYouJackie you can’t live like that! I agree with the PP that said look for a second opinion. You poor thing.

From what I’ve heard about kidney stone pain you are absolutely not overreacting! What a nightmare. I hope they come up with something during the ward round. Have they discussed lasering the stone? Or is it too large?

@SeaToSki

Have you though of asking for a second opinion at another hospital. It spinds loke urology at the hospital you are at dont know their arse from their ear given how long they took to work out what the problem was to start with and now a supposedly easy surgery has turned into a shit show. Im not sure I would be putting much faith in them going forward. You are completely entitled to a second opinion and / or a case review by a separate set of doctors. Can you google centers of excellence for urology?

I haven't, I was going to make a complaint but hadn't thought of a second opinion. How do I go about that? Do I need to ask the urologist I see today to arrange one? I'd feel really uncomfortable having to tell them I think they're wrong. Or do I ring my GP and ask them to refer me to another hospital? There's a fantastic hospital about 40 mins from in the next city.

I don't have any faith in this hospital at all and i'm dreading giving birth here. I've just checked and my first trip to A+E with the awful kidney pain was 7 weeks ago, I'm baffled at how it took 7 weeks of back and forth for someone to scan along the ureter instead of just the kidney. And that was only because one fantastic sonographer who was told to scan my gallbladder knew it was a kidney stone.

@InglouriousBasterd

From what I’ve heard about kidney stone pain you are absolutely not overreacting! What a nightmare. I hope they come up with something during the ward round. Have they discussed lasering the stone? Or is it too large?

I think the plan is to laser the stone but they say I can't have this done until I've given birth because there are risks with the general anaesthetic, they could do it with a spinal block but if the stone then moves mid surgery they'd have to give me a general anaesthetic anyway. They say there are risks of the GA affecting blood flow to the baby causing a miscarriage.

They also say there's a good chance that as the stone breaks during surgery, it can cause an infection and the antibiotics to treat that can cause a miscarriage or it could cause sepsis.

I asked to speak to an anaesthetist and he seemed dead against the surgery being done as did the urology consultant.

They also say there's a good chance they won't be able to get to the stone and would have to fit a stent which would be just as painful as this catheter apparently.

Bloody hell @ShalomToYouJackie

Im not in the UK at the moment, so I dont know the ims and outs of specifically how you get a second opinion, but a quick google turned this NHS page up

www.nhs.uk/using-the-nhs/about-the-nhs/your-choices-in-the-nhs/

Maybe you call you GP and ask for advice on how to proceed, or call PALS at the hospital you are at and ask them to organize your care being moved to another hospital etc.

Turn into one of those implacable women you imagine in history who never take no for an answer. You are the customer here. It is your body, your choice, they are paid to help people with their best advice and expertise, not compel treatment or no treatment. They are also fallible.

How are you feeling now @ShalomToYouJackie? I hope things have improved and you’re a little more comfortable. I’ve just started a course of antibiotics for a kidney infection. Feeling pretty rough and feeling sorry for you in a much worse situation. xx

Thank you @seatoski that's ever so helpful! I appreciate it.

I saw a different consultant this afternoon, he was great. He says if I leave the catheter in, there's a 25% chance of it passing by itself now that my kidney isn't under lots of pressure. He said each of the risks from the operation have about 10% of happening. He's sent me home and I've got a phone number to call and if the pain is too bad I'm to ring up and he'll do the op. We've agreed I shouldn't rush into having it as this pain may settle so I'm giving it until the end of the week. He says most of the pain will be the kidney stone moving around now that the ureter will be relaxing a bit but it should get better.

It's so lovely to be home now, my DM brought me home, changed my bed, bought me a huge u shaped pregnancy pillow to keep my propped up when sleeping and has been fab. She's gone now and I've had a shower, got clean pyjamas on and will just rest for the rest of the day. I did take a dihydrocodeine about an hour and a half ago that has helped a little :)

@Littletiger007 oh no that's rough, hope you're feeling okay? I'm quite lucky that apart from being in a lot of pain and tired, I don't actually feel sick at all. Bloody glad to be home. I'm on my 3rd round of antiobiotics now although I'm not really sure what for!