UNDIAGNOSED CHRONIC RIGHT SIDE PAIN! I can't live like this! In need of advice! Please!

Hey everyone! I'm a 31 year old female, suffering with severe chronic right side/ab/flank pain everyday and need some advice, please.

In march 2014 I had a beautiful baby girl by c-section. No issues, healed fast. In May of 2014 I herniated a disc and was basically bed bound for a few days due to not being able to get up or walk because of my sciatic nerve. That eventually went away for the most part, every so often I'll feel it but nothing too bad. In August of 2014 I was at work (serving) and got slammed with this right side flank pain- no injuries or anything. I went to the E.R thinking I had kidney stones, only to find out that I did but they were lodged up in my kidneys and pretty big- bilateral stones left 3mm and the right 4mm but he assured me that wasn't what was causing my pain. He told me they're way up there and haven't decended yet. He sent me to a urologist to see if blasting them was an option. It wasn't. The urologist took an X-ray of my kidneys and said if they show up we'll do it, if they don't then we'll wait. They didn't show up.

When I first got the pain I would get it every other month. Then in 2015 the pain stopped going away. I went to Doctors who didn't take me seriously and gave up for a while.

As time went on the pain got worse and worse. In 2016 I went to the ER for severe right side pain (this happens a lot) they did an MRI and found a cyst on my ovary and said I needed to see a gynecologist so I did. I explained the pain to the GYN and how I was afraid it could be cancer because the pain is THAT bad, he said it sounded like nerve pain, then he went to examine me and him touching my uterus hurt so he said it could be Endometriosis and said we could try hormones or laprascopy and I opted for a laprascopy. He was concerned I might have had innercystial cystitis too. He told me he would biopsy my bladder and uterus to make sure we don't miss anything. He also asked if I'd be interested in removing my tubes since he'd be in there and I wanted that done as well.

When it was time for the laprascopy, he came in to talk to me about "the tubal ligation laprascopy" and I reminded him this is for Endometriosis and innercystial cystitis too, it seemed he had actually forgotten that part. When I woke up from surgery I heard them telling my husband " No Endometriosis and no innercystial cystitis" I cried! I asked them if he took biopsies, they said no he had no reason to. He said I did have scar tissue on my liver and right ovary that he cleaned up. I was so upset and discouraged I gave up.

In January 2017 with the pain worse than ever I went back to the GP he order a full kidney panel. ( he was concerned about the amount of Advil I take) labs came back perfect so then he referred me to a GI doc and a Urologist. I went to the GI doc and I had and endoscopy and colonoscopy. Endoscopy showed chronic inactive gastritis in my Antrum and colonoscopy came back perfect. I'm still waiting for my Urology appointment in June. I had my colonoscopy today and found out the results immediately. I'm so discouraged, the pain feels like it's killing me and has taken my quality of life. I can't do things anymore that involves walking or standing for longer than 15-20 mins. Standing and cooking dinner hurts so bad I end up in the fetal position. I used to be happy and full of life and now I'm just an empty shell. I'm looking for anything, options, advice, similar stories, just support. I'll list my symptoms and more details below. Thanks for reading.

Symptoms

Right side flank/pelvic/abdo pain around the hip and radiates- my pain scale isn't numbers anymore its tolerable and intolerable.

Worse with movement

Blood in my urine

High WBC

Frequent UTIs

bilateral kidney stones lodged (not decending)

Other symptoms that came over time:

Fatigue (so bad everyday)

Hair loss

Vision got really bad- at night driving I see double

(I don't drive at night anymore)

Irritability

Dropping things

Low(ish) blood pressure 89/49

Brain fog

Can't remember short term things easily

ANXIETY!!

Upper back spasms

Neck/headaches

I go to the ER 6-12 times a year for my chronic undiagnosed pain. Please help!

15 Replies

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  • Hi,

    I have seen your symptoms and wondered if you have asked your GP to do a liver function test and ultrasound. I only ask is it may be, given your history gall stones or something not to worry about called Gilbert's Syndrome. Gilbert's gives those symptoms but is totally harmless, I was diagnosed at age 35.I wouldn't worry too much as long as you keep healthy. I found cutting down on fatty and sugary foods helped.

    I. Sure you'll be fine but if you want to ask anything please don't hesitate😀

    Tony

  • No had every test in book, with me eating paracetamol, liver been tested, 3 times, kidneys fine, got all bloods, done last year, they found out iv no amune system, so I'm never out of house, if I do go out, I always catch something, just getting over a chest infection, it's never ending, I'm afraid 😨, could only happen to me, would love 😍 a quality of life again, used to love my job, my home 🏡, it all seems pointless now

    Thank you for your help.

  • Sounds like you have an auto immune issue. I have a close friend with lupus and she catches everything and is always sick or in pain. I would insist on blood work including and antibody test (ANA test) I understand the way you feel, I used to love play with my kids and go out and do things. It almost kills me to clean up my house, cook dinner, anything active. I want my life back too. I hope we get it back. Xoxo update me on how you are:)

  • @GTFC74

    My blood work indicates my liver is perfect, I know I had adhesions that were scraped off during my laprascopy. I've never had gallstones just kidney stones. My kidney function is 94 and was 98 in February so it's slowly dropping and I have protein and a lot of blood and high WBC. My kidney stones are huge and too big to pass so I have to get surgery. I'm hopeful that's what's causing my pain especially because the huge stone is on my right side!!! It would make sense! Idk. Thanks for reaching out. I'm glad you have a diagnoses and have it under control. Did you ever have burning in your chest under your ribs? Xoxo thank you.

  • DLAZ, I'm really sorry to hear you're suffering so badly.

    My experience with kidney stones was years ago, and I was lucky enough to have BUPA through work - so had them removed via surgery - after ultrasound didn't work. (Basically long thin tube with tool on the end to break them up and remove, passed through urethra.)

    In terms of the chronic pain, are there any local support groups which you could join? Just so you're not isolated.

    I really hope you find some relief soon.

  • No nothing I'm in Stranraer, Scotland, there is nothing here, you have to travel 100 miles for tests, special appointment etc, never ending, I get £138 a fortnight, for sick 🤒 money, to run a 3 bedroom house, that I own, system stinks, could do with my, tax, and contributions, back,, and a decent 😷 doc,

    But I'll just have to get on with it, living alone, not nice, iv no children, had 4 miscarriages, that I no about

    Thank you for your help

  • I understand pain believe me but don't give up, I know it's discouraging and defeating but you deserve a happy pain free life. I wish you the best. Xoxo

  • Thanks for commenting!! how long were you aware you had kidney stones before removing them? Did you have an obstruction or did they get them out before they started moving? No support groups that I know of, it's so hard but this site is helping me a lot. Thank you for reaching out to me, it means more than you know.

  • The first I knew I had a kidney stone was when it was passing from the kidney to bladder. That woke me up. Visit to GP that morning and they sent me to hospital to have it checked out, who kept me in that day for observation until it reached bladder. Then it was a question of waiting for it to pass, painfully, in urine.

    After that, I learned to recognise the twinges in my lower back - which led to BUPA and treatment previously described. Best thing is to stay hydrated, aiming for 2 litres of fluids a day. I find that flushes them out and mostly prevents them.

  • Unfortunately mine are too big to pass! I'm constantly peeing especially at night. Barely anything comes out. Blood is visible in my urine tonight. It's not dark and doesn't really smell off. I have bad kidney pain in my back. Worried about another UTI possibly or upper tract infection but hate going to the hospital or doctor.

  • If there's blood in your urine, of any kind, then you should at least call NHS 111 - it's free to call. Not doing so will simply lead to more pain and worrying. Calling them will lead to at least knowing what's happening and possibly relief from the pain.

  • Hi So sorry to hear you have had such a difficult time lately with so many different symptoms, have you got any copies of your blood test results you can post on the forum as there are many good people who are able to support and hopefully point you in the right direction

  • Hey thanks for commenting!! I have some of it! Working on getting the rest! I'll post when I have them. Thank you so much. I hope this is over soon.

  • I think it's your gall bladder, I was crawling about the floor for a year, both side in agony, pushing my hands in them on my knees,run to doc, 100 time, till I collapsed, rushed to a an e, they put me through big scanner, nothing showed up, ahhhh, then a junior doc went got baby scanner, gall stone were there, but gall bladder had melted into every organ in my body, rushed to a hospital 100 miles, away waited, ten day to get operation, it was only going to be 45 min 7 hours it took to get bit of my gall blader out it was every where, giving me all that pain every where, uti infections, blood in urine every time, the tablets I was taking probably disintegrated the gall bladder, I was cut and stitched inside and out what a mess, the other people's in the ward thought I'd died, docs again, took a wee Junior doc to push his idea forward, but that pain I'll never forget, crawling about floor for a year, just a thought, hope you get sorted, pain is not funny and you get them to do every possible test in the book, take good care. ☝

  • Heyy thanks for commenting! Did you ever not have pain or was it consistent? Was the pain between ribs and hip bone and radiates? I'm dying! Seriously!!! Would something show in blood work if it were gallstones? Would I see a GI for that? I'm always bloated with pain and pressure and constant right side ache and nausea and frequent urination at night!. In ct scans of my abdomen it always looks normal. Let me know what you think! Thanks so much!

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