Kidney/flank pain

[Telli686]

Hi everyone, I'm suffering really bad left side kidney area pain right now, its so bad I feel nauseas in my stomach and really dizzy. I had this once before and ended up in A&E. They thought I had kidney stones the pain was so extreme, but three Mri, ultrasound and CT scans showed no stones. No one has been able to figure out what the pain was, I personally think it could be endometriosis cells hiding on the kidney or around it, (the doctors were male and say it won't be that, some didn't even know what endo was!) because the pain seems to always flare up exactly a few days after my cycle. The pain also extends down my left leg with my only way of describing it as a real deep set ache all the way down from my thigh into my calf. During this crisis, I don't want to end up in A&E again, if anything I need to stay away from anywhere right now, so i'm kinda panicking because the painkillers are only partly helping, and it's slowly getting worse with each day. My next appointment isn't till June, and that's if it doesn't get cancelled! Any pain relief tips? Any idea what the hell is going on with my body? FAQs, I have no infection (that I know of) no problems urinating, just lots of having to go, and lots of bowel troubles right now. Please help if you can! xxxxx

[Pdbird]

Hey I have exactly the same!! I have had lots of kidney stones over the last 5 years, with the same symptoms. I’ve never been diagnosed with endo but I do know I have lots of scar tissue in my abdo & pelvis. I’m currently waiting to see a kidney specialist as a urology specialist said my pain wasn’t caused by the stones & debris I have in my right kidney.

When I get a big stone the pain is more intense & goes into my pelvis making me physically sick, need to use the loo more & also peeing tiny amounts which is usually bright red.

Not much help from me sorry but fingers crossed someone else may reply with More insight.

Paula 😊

[NicMac11]

Hi, I had this problem 7 years ago but my kidney specialist was fab and he suspected endo. I ended up in hospital every month for five months. They discovered that I had a blood vessel wrapped around my kidney tract and they believe Endo was growing somewhere nearby causing this blood vessel to tighten on the tract and cause repeated infections. They operated to relocate the tract and no infections to date. However, I still get a pain every month. It feels like bruising or that I’ve been punched in the kidney. It’s cyclical so def Endo related. I know it’s super scary atm but you need to get this looked at. Living in constant pain is horrendous. If u can get a water sample to the gp, that would clear up whether there’s an infection. Hot water bottles, exercise and painkillers are how I get through but I would def speak to your doctor. Hope you get sorted xx

[Moon_maiden]

I had similar pain last year, along with frequency. I had one GP to say expect kidney stones and UTI at my age. When I mentioned this to another dr, he referred for a scan, but ignored any link when I suggested hormone link. My kidney function was also a bit up and down. Scan showed fibroids, enlarged uterus, no kidney issues. Referral to gynae, had to insist, that went wrong area, so went private and diagnosed endo. Unfortunately lap, treatment, now thinks deeper.

Ask GP for bloods to make sure kidneys OK and go through pain relief, I’m taking Nefopam (non opiate, more expensive), paracetamol and very occasionally at night morphine. That way you can rule out kidneys.

When pain kicks in after sitting/driving the mid back hurts as well. I’m sure there must be a hormone link somewhere. When I started desogestrel the kidney levels shot back up to higher than they’d been for a long time.

[ChloeL934]

Hey!!

This pain is EXACTLY what I had at the start of the year, and also pain down my left thigh, feeling like I need to go to the toilet a lot.

I couldn’t take the pain much longer and went to the doctors, they said I had urine infection, I went home started my antibiotics and it changed nothing, pain got worse ended up in A & E and had a CT scan they suspected kidney stones, turns out I have a cyst on my left ovary.

Please don’t let them fob you off, I’ve been dealing with hospitals, gps for years now and I’m finally getting somewhere now.

You know your own body and when something isn’t right!!

Always here if u need a rant or even a chat

Take care xx

[Telli686 in reply to ChloeL934]

Wow, thank you for your reply, I'm so sorry you had to go through all that too! I have had a few ultrasounds, been fobbed off over the year with antibiotics (which I refused to take after finding out I didn't actually have infections they were just being cautious) and still no answers. It's the nausea, leg ache and kidney pain that is bugging me the most right now, especially as getting any appointments anywhere is going to be tricky right now xxx

[ChloeL934 in reply to Telli686]

Yes!! They keep giving me antibiotics then when the urine is sent off there isn’t even a infection, I told them I’m not going to keep taking antibiotics for absolutely no reason. It’s not good for my body, now they are looking into it more and sending me to urology.

I use heat pads and they are amazing for easing pain, try those if you have them for the time being, and once all this is over put your foot down and don’t take no for an answer. You got this xxx

[Telli686 in reply to ChloeL934]

Had a phone call dr appointment this afternoon, she said "go to a and e if it's that bad" thats the best she could do Feeling frustrated and in so much pain. My entire left side is just in agony from my head down to my toes, literally just aching. plus the stabbing pain in my kidney. Looking into going private, but to be honest scared to go anywhere near a hospital or doctors surgery at the moment! thank you for your help, i'm going to try my heat pads again, they usually help for my normal endo pain, but not really touching the kidney pains unfortunately xxx

[Christie-elli]

Hi I know this post is old and hopefully you’ve had some answers but I’ve just come across it in search for similar cases to mine and maybe this will help if you don’t have answers. I have stage 4 Endo and it’s on my bowel and wrapped around my ureter (which is the tube connecting your kidney to your bladder) so my pain is a throbbing ache/sometimes stabbing in my kidney. With the Endo wrapped around the ureter it causes my kidney to swell which causes the pain.

[Telli686]

Thank you, I actually have only just been referred to a specialist! It’s taken so long! Thank you, I’m going to mention that in my consultation, I think there’s definitely endo on my kidney or something to do with it as it’s still so incredibly painful! Do you mind me asking how you found that out? Because all my scans so far have been clear and apparently my kidneys are miraculously healthy? Thank you 🙏

[Christie-elli in reply to Telli686]

For my my kidney showed swelling on an ultrasound and MRI and they could see it wrapped around the ureter on the MRI also. I have previously had Renal scans to check the function of my kidney and they are happy with the way my kidney is functioning but it’s something they want to keep an eye on x