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?

[TenShortStories]

I was just remembering your thread OP and wondered how you were doing?

[ShalomToYouJackie]

@haggisfish I'm okay, thank you for asking. The pain has got better over the last few days and I can walk around alone. Not taking painkillers anymore either

Since last night I've had a constant urge to wee but not much is coming out so I hope nothings wrong. I'm worried I've either got something up with the other kidney or the stone has moved to my bladder although I'm sure I would've felt it moving!

[Haggisfish]

How are you feeling? Hope you’re ok.

[ShalomToYouJackie]

@Tencornmaidens that's a great idea thank you. @haggisfish funny you should say that! I was given some Movicol when in hospital but ordered Lactulose and a big bottle of it has arrived :) thank you

[Haggisfish]

Glad things are looking up. Be aware of constipation risk with codeine-I think you can have lactulose but might be worth asking Gp.

[TenCornMaidens]

You have been treated absolutely appallingly, OP.

I really think you should start visibly making notes during every consultation / conversation with a shitty shitty nurse, or asking to record them on your phone, and casually say you are passing all of this information to your lawyer.

[ShalomToYouJackie]

I slept much better last night, a nurse came to change the urostomy bag this morning and it's on properly now and much more comfortable to sit down and lie down with. It hurt a bit when she flushed the tube but it's okay now.

Having a duvet day with the cat on my lap, eating chocolate peanuts and feeling tons better! Email to PALS has been sent

[TenShortStories]

You've been through much, you poor thing.
Very glad to hear that you're getting onto PALS, this is definitely the sort of thing they're for. I would write down a very detailed time line of events asap.

[PearlclutchersInc]

Sounds like you've a dradful time. Fingers crossed for the future.

[peonia]

That's great to hear OP, it sounds like you have some good people on your side now! Hope you have a better night tonight.

[ShalomToYouJackie]

I've left a message with the secretary and I've managed to arrange it now so I can have the appointment once a week at the surgery next to me.

And finally some good news! I had a midwife telephone call today, told her what's going on and she got a maternity consultant to call me back. I will be under consultant led care now, she told me they would look after me, I'll get extra scans at 24 weeks, 28 and 32 weeks and extra appointments will be booked for me and they'll keep an eye on me which is such a big relief. I finally feel supported now. She also told me to ring the GP and get a prescription for more dihydrocodeine as I was only sent home with 3 days worth. She said taking the medicine is safe and not being in as much pain is much better for the baby. Feeling much happier this evening :)

Going to complain to PALS tomorrow about the care I had in hospital and the phone call with the district nurse

[DigitalChristmas]

I agree with the pp who said contact the urologists secretary. I’m so sorry you’ve been treated like this. 💐

[Fittata]

This is awful. You definitely need to complain. Is there a sympathetic GP you can speak to who can sort it all out? Or call the urologist's secretary and explain that the district nurses are refusing to help and that you cannot access the GP practice they say to must go to.

[peonia]

This is absolutely appalling, I would also get your husband to contact PALS with an urgent complaint. They are usually quite good in my experience.

I would also try and talk to the urology nurse again. It is ridiculous for a district nurse to go against the specialist's instructions.

If the above doesn't work I would contact your local MP for help.

If you do have to go to the GP in the meantime, I am sure someone in your local area would give you a lift. Try and see if there is a local facebook group for volunteering.

I am so sorry you are going through this and it is awful that you have to fight for treatment when you are in pain, exhausted and vulnerable. You are not an inconvenience and the nurse is wrong to compare you to a cancer patient.

Wishing you the best and hope you feel much better soon.

[WorkingItOutAsIGo]

I am so sorry for you and so angry on your behalf. This is appalling treatment. Can your husband advocate on your behalf? I recommend contacting PALS urgently.

[ShalomToYouJackie]

@Seatoski thank you for asking. I'm not great, I'm still in a lot of pain and struggling to walk, I still haven't slept properly.


The district nursing team are still refusing to see me, despite the urology head nurse contacting them insisting they do. They phoned me to tell me they wouldn't be seeing me. I'll have to get a nurse at the GP to do it, so I'll need to make an appointment every week until June.

She told me that even people with cancer who have nephrostomys have to go into the GP practise and so I can too which I thought was a shitty thing to say. I said I can't walk and she said "well you can sit in a car". I said barely, I can't even sit on the sofa, DP has to help me get to the toilet etc. I said me and DP don't drive and the practise they want me to go to isn't the one a 2 minute walk from me where I'm registered but the one half an hour away. She told me to get a taxi and I said I'm on Universal Credit, I can't afford £15 a week on taxis.


The urology nurse also told me the bag needs to be changed twice a week but the district nurse told me the practise would do it once a week and that was enough. I explained that the urology nurse explained to me the bag I had was designed for stomas and so wouldn't stay stuck for a week and she interrupted me with "I know what the urology nurse said but this is what I'm saying". She said to make sure DP learns how to change the bag as if it fell off in the night and the hole to my kidney was exposed and leaking, I wouldn't be a priority so he should learn to do it.


She was really nasty and it's made my mental health even worse. I've felt like a massive inconvenience to people throughout all of this and it's not fair :(


Sorry to be so negative, hopefully I'll feel better tomorrow.

[SeaToSki]

How are you doing today OP?

[QuestionableMouse]

You poor thing!

When you're feeling better I'd contact PALS and detail this because you've been let down by so many staff it's unreal. Or get someone to do it for you now.

[InglouriousBasterd]

Fingers crossed it eases, what a nightmare for you.

[ShalomToYouJackie]

Had a bit of an awful night's sleep as DP had to help me get up to the loo every hour or so. Also the district nurses rejected my referral to come and change my urostomy bag and flush it every week saying I don't need at home care.


Thankfully I spoke to a fantastic urology nurse this morning who says well actually the referral should've been for twice a week not once a week and is going to sort it for me as she says perhaps they don't realise I can't actually walk!

The pain is better today (touch wood) and my wee has turned from bright red to pale yellow which is a good sign 😁 feeling a bit more positive today

[crabb]

So pleased you’ve seen the second consultant, @ShalomToYouJackie, and that you have his phone number should things get worse. Really hope you’re feeling better soon.

[theliverpoolone]

Just wanted to add my sympathies and horror at what you're going through, OP. I had a kidney stone in the summer - the pain and vomiting was horrific, and that was a 'straightforward' one. Codeine, morphine and paracetamol had no effect whatsoever. I really hope the pain eases and your pregnancy goes smoothly

[ShalomToYouJackie]

@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!

[ShalomToYouJackie]

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]

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