I NEED ADVICE! HELP undiagnosed chronic right side flank/abdominal pain

[DLAZ]

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!

[Mary-intussuception]

Hi DLAZ.

Have you had Intravenous antibiotics for the urine infections?

Do you have blood in urine now? Do you check your temperature? Is it raised? Is there any problem with bowel movement?

Can you get a urine sample in to GP or if having pain and symptoms now phone doctor now and ask for emergency appointment and take sample in. Or call Out-of-hours GP after 6pm or go to A&E minors. You should not be left with this pain.

Unresolved urine/bladder infections can lead to Acute Renal Failure and Sepsis. They do NOT always clear up with oral antibiotics. As soon as the tablets stop they increase and recur sometimes.

I am only speaking from personal experience having picked up on a couple of your symptoms from your list. I am afraid I am not qualified to comment on all you have suffered. But may I just say you have been through such an awful lot.

You deserve some answers from the Medical profession and FULL diagnosis and URGENT care and treatment.

Write out your list of symptoms as you have on here and keep it with you. Give it to Doctor if necessary. But get any Urine/bladder infection treated NOW.

Don't let past bad experiences with hospital doctors and GPs put you off seeking medical help. X

🐥

[DLAZ in reply to Mary-intussuception]

Thank you so much for your reply!! I'm seeing a urologist, still have blood, protein, and white cells but no bacteria. In the ER they've given me iv antibiotics and it helps... a little. It always comes right back, sometimes with bacteria but sometimes not. They did a ct scan that showed bilateral kidneys stones (I've had ever since the pain started) but they've gotten way bigger. 1.1 cm on my right side in the renal pelvis and 0.6 cm in my left! They're not convinced its what's causing my pain. Also the past month I've been peeing about 4-6 times a night, severe bloating, and burning pain in my flank area front, back and both sides. Kidney pains in my back too. I hope this is over soon. Thank you so much for caring and commenting. It's nice to talk to people that at least Kinda get it. Xoxo

[DLAZ in reply to Mary-intussuception]

I posted my last two urinalysis' on this page!

[Mary-intussuception]

Does your doctor know about your low blood pressure?

Have you ever had blood tests to check your Thyroid gland is functioning properly any Antibodies tested?

[DLAZ in reply to Mary-intussuception]

My blood pressure has been all over lately mostly normal? It's weird. I just had a blood test checking for all of that stuff! Came back normal aside from Vit D deficiency

[Mary-intussuception in reply to DLAZ]

Have you looked up Vitamin D deficiency? Could this be possible cause of calcium not being absorbed properly and deposited in wrong parts of body and cause of calculi (stones) in kidneys???

I was found to have micro-calcifications in breast tissue (non-malignant) many years ago. Also had Ultrasound scan of Gall Bladder 7 years ago and found NUMEROUS caculi (Gallstones ). I recently asked for Vitamin D test following advice on Thyroid forum and I am Vitamin D deficient. I think I have been many years. Now on Vitamin D supplements.

Thank you so much for your reply. I hope you find out what is happening and get proper care and treatment to get you back to good health very soon. Keep in touch.

Thinking of You

God Bless

Mary XXXX

[Mary-intussuception in reply to DLAZ]

Did you have the following blood tests :

Full Thyroid Function Tests that is - FreeT3, Ft4, TSH, Thyroido Antibodies (TPO & Tg) ?

B12 , B9 (Folate) and Ferritin.

I think it would be a good idea to eliminate Hypothyroidism.

Xxxxx

Love Mary

[Mary-intussuception in reply to Mary-intussuception]

ps

You have lots of symptoms of an Underactive Thyroid Gland (Hypothyroidism).

In a rush now but will be in touch again soon.

Have you considered asking for an Ultrasound scan of your Thyroid?

What is the pain in your neck like? Do you have any throat/swallowing/lumpiness in throat problems?

X 🐥

[DLAZ in reply to Mary-intussuception]

That's what I thought too but it came back normal!! It makes me so frustrated, nothing shows up but I feel so awful everyday!! I never knew! I always have neck pain always assumed it's muscle, sometimes I do have a hard time swallowing, and feels like a lump not consistently though. It feels sore, hard to fall asleep, and very stiff on and off but lately I haven't been sleeping well because it hurts my face/head/neck to lay on a pillow. It's insane. It's like I'm laying on a brick. I look forward to hearing from you! Thank you!! So much!!

[Mary-intussuception in reply to DLAZ]

Could you ask for the Ultrasound scan of your Thyroid/Neck?

I have Hashimoto's Autoimmune Thyroiditis. This is the cause of Hypothyroidism in many people as you probably know.

With Hashimoto's bloods can fluctuate. They can be 'within range'. However the therapeutic TSH is much lower than the top of the 'normal' range TSH.

I had Hypothyroid Blood results in 2008 (was very poorly at the time with multiple problems/illnesses ) NO ONE told me. Results were overlooked. Noticed on the computer by a different Consultant 18 months later but his tests came back then as Euthyroid (NORMAL ). I asked for the scan 18 months after that (now September 2011 ) . Morning after scan my doc made urgent referal to Endocrinologist.

Are you sure you have had Antibodies tested? Could you get your blood tests results, all figures including normal ranges in brackets and post them on here?

X 🐥

[Mary-intussuception in reply to Mary-intussuception]

ps

All these symptoms are significant. Add them to your list of all the other symptoms you posted 2 months ago and take to doctors. If they refuse scan you could say something like - these are my symptoms. I would like to eliminate Thyroid problems for example Hashimoto's Autoimmune Disease OR confirm it. All the best. Be careful.

X🐥

[DLAZ in reply to Mary-intussuception]

I have a Vit D deficiency actually! About 5 years ago I was diagnosed with osteomalacia but it's improved a little so now I guess just a deficiency? I had those blood tests a week or so ago and everything was great except vit d. My calcium level is perfect though! How does that make sense?

[Mary-intussuception in reply to DLAZ]

Have you had blood tests for:

Phosphate

Prolactin

CA125

?

It would be helpful if you could put all your blood tests results on here with normal ranges in brackets.

Do you think many of your pain symptoms are due to your Osteomalacia?

Are you only on Ibuprofen for pain?

Are you on Vitamin D and Calcium supplements?

X 🐥

[DLAZ in reply to Mary-intussuception]

My doctor smirked when I asked for CA125 blood test and said there's no reason. My other doctor literally told me "No, we know it's not malignant or you'd be dead" theyre so mean when I ask for stuff. Yes I take between 12-24 tabs of ibuprofens 200mg a day. 6-8 at a time. I have a 3 year old and a 7 year old idk what else to do. Ive tried tramadol, gabapentin, Percocet, Vicodin. They don't touch the pain and the gabapentin and tramadol give me awful side effects. I take Vitamin D3 on and off. I have clavicle pain and general bone pain that I assumed is the osteomalacia. Not the localized chronic rightside pain(between ribs and hip, I'm not sure if I mentioned where exactly) I thought I was passing kidney stones 3 years ago when I went to the ER when the right side pain first started but the doctor said they weren't blocking anything and they couldn't be the cause of my pain. He also found a cyst on the right ovary. I get those and they disappear and come back. I had a pelvic Laprascopy and he didn't find anything except a lot of old scar tissue/adhesions- scraped adhesions from my liver and ovary. So that's why I thought my pain wasn't my kidney initially but now I wonder. Especially with all the blood in my urine. What do you think?

[DLAZ in reply to DLAZ]

Also- my right side pain is deep inside the bones around my pain never hurt until recently my right hip hurts occasionally - not sure if that's separate?! Ahhh it's insane. I also want to add- I have rectocele prolapse stage 2 and a long history of short lived ovarian cysts that fill and burst no ones ever made a big deal about that. Now I'm in so much pain I have no idea when or if I have one. I have to find the blood tests I have and I've requested medical records. I'll post asap

[DLAZ in reply to DLAZ]

I wrote that wrong! My right side pain is deep inside NOT IN MY BONE!!!

[Mary-intussuception in reply to DLAZ]

Oh dear. What dreadful, unprofessional comments. The reason for CA125? Bloating.

Ibuprofen. That's a lot to be taking long term, don't you think? You will be taking that with or after food, I'm sure. Have you considered combination of paracetamol & Ibuprofen? Taking 2 paracetamol then have some food or milk and biscuits and then 2 or 3 x 200mg Ibuprofen. Take these 3 or maximum of four times a day. At least four hours between doses.

What do I think?

It's difficult for me to say as I am not medically qualified. However you do have kidney stones don't you.? These can be very painful I believe.

I think you need to see Kidney Specialiast or a doctor who will sit down with you and listen and take appropriate action. Write everything on your list as you have here - all symptoms, pain description and blood tests you wish to ask for.

When are you seeing the Urologist?

About Ibuprofen - have you checked for signs of internal bleeding? Check stool for occult blood. Catch some on paper and take a look for "coffee grains" or any fresh blood. Look in pan before flushing. If annything resembling coffer grains or any fresh blood then get a sample into doctor for analysis.

X🐥

[DLAZ in reply to Mary-intussuception]

I agree about the Ibuprofen- I feel like I'm killing myself just to get a little relief. With out it I'm in the fetal position in the worst pain. I'm in such pain in the a.m I have to take it before I get out of bed. Tylonal doesn't touch the pain at all but I could try and see what happens. I don't want to take all this ibuprofen, I don't want any of this. I'm trying to hold on to what little of life is left for me and push through what I can but when I don't take it I can even function or converse. It's just SO bad. I've told doctors all of this. I've listed all my symptoms sometimes I'm cut off sometimes I'm not. I've recently since end of 2016 have seen a Gyn, GI, and now a Urologist. I saw her told her a little she immediately worried my stones were tumors and ordered a abdopelvic CT Scan and ended up being stones, did a urinalysis and sent it to cytology. I posted two of my urinalysis results 7 months apart on the pain concern page if you want to look. I have a cystouteroscopy (I don't think that spelled right) scheduled on the 18th and the doctors going to talk to me about options for stone removal and set a date.

Kidney stones are SO painful! Doctors say stones cant cause pain when they non obstructing because the inside of the kidney has no pain receptors but the outer capsule does, so I've been researching what can cause pain to the capsule and all I've really found so far is hydronephrosis ( fluid in the kidney usually do to an obstruction or reflux in the ureters) but nothing else yet.

They won't send me to a nephrologist because my kidney function isn't below 60.. You'd think they'd want to catch that early since it's known as a "silent disease/silent killer" GP acting like my numbers dropping wasn't a big deal, and acted like the protein wasn't a big deal. You have to be stage 3 to see kidney Dr apparently. It isn't even all about CKD my kidneys don't seem well ESPECIALLY my right. They take it so lightly and doesn't seem get/understand/care about the severity of it. My Urologist is nice, listens, but doesn't have a lot of time and always booked and takes months to get in for Appt and procedures. It's a nightmare. I see red blood in my stool more than I'd like to admit. I have no evidence of hemorrhoids, fissures, polyps, colonoscopy came back perfect. I've gone to the hospital during and episode involving a lot of blood he examined me found nothing and sent me on my way. No one takes me too seriously wherever I go it's always the same to some extent. They don't have a lot of time or have any idea what's wrong with me

[Mary-intussuception in reply to DLAZ]

Hi again. How are you today?

I have just seen your reply about Ibuprofen as I was very tired & busy yesterday. Will comment on next reply. But wondered if you had tried contacting the National Kidney Foundation US?

I got this from their website:

NKF CARES Helpline Toll - free 1.855.NKF.CARES (1.855.6532273)

[e-mail]

All other questions call our Main NKF #

1.800.622.9010

Does this make sense?

There is also an Ask the Doctor blog. And you can search your state/zip code for an office or events near you.

Wonder if they could be any help/support with fuller info about your Kidney conditions and severe pain.?

X

🐥

[Mary-intussuception in reply to DLAZ]

Hi DLAZ.

You do know that Ibuprofen should not be taken on an empty stomach don't you. It can cause - stomach bleed, duodenum ulcer - which could bleed and become potentially fatal, intestine bleed. ALSO taking lots of ibuprofen long term can cause kidney damage.

About your pain relief. - You have Rectocele also. Was that caused by constipation / straining at stool or childbirth?

I have Large Anterior Rectocele and Full Thickness Intra-rectal Intussuception also prolapsed womb and total weakness of Pelvic floor. Therefore I have Obstructive Defecation. I can't take codeine or iron as they stop bowel working.

Are your bowels functioning at the moment?

Can I ask you to get some Lactulose medicine and Fybogel sachets (orange flavour).

Stop taking Ibuprofen before getting out of bed. Take 20mls Lactulose tonight. Take 2 Cocodamol In morning before you get out of bed. Only take the 8/500 that can be bought over counter at pharmacy. Stronger codeine will make you feel spaced out/ confused/ very sleepy. Drink plenty water take 10mls Lactulose then have breakfast. Try to cut down on caffeine. We find Kenco decaf tastes like real coffee. Or stick to juice, water or decaf tea. I start with a Banana then porridge made with semi-skimmed milk. Straight after breakfast take your Ibuprofen. Start with 2 x 200mg and take a third if still in pain. Remember to wait full 4 hours after cocodamols to take one or two more. You could try one cocodamol with one paracetamol before or with lunch and your ibuprofen after - 2 or 3.

Same at your last meal. In the evening take a Fybogel sachet adding a little fresh orange juice to the water to stop it going too thick before you finish it. Also take 15-20mls Lactulose. See if this helps for a few days.

Whatever you decide to do please cut down on the Ibuprofen. Hasn't your doctor suggested changing to Naproxen? I think they can only be taken maximum of two per day though. And when taken long term can also maybe have effect on kidneys.

Pelvic floor exercises might also help with eliminating if you can manage them.

With all your pain and having two daughters to look after I really don't know how you cope.

Thinking of you X Mary

🐥

[Mary-intussuception]

You can request copies of your hospital records if you wish under the Data Protection Act. You may have to fill in an application form.

[DLAZ in reply to Mary-intussuception]

I just filled out an application about 3 days ago and sent it in!

[DLAZ]

My rectocele is from childbirth- it was so bad I had a c-section with my second. I have to take laxatives to go, and sometimes even then it doesn't work. I had my colonoscopy (prep was hell) and all look PERFECT! What! I was shocked but not surprised. I always seem healthy-ish and they underestimate the severity of it.

Thank you for sharing/helping with the medicine routine. I'm going to the store later and I'll try out what you said. I'll try anything at this point. I feel worse than ever. This past week has been awful and I have to until the 18th for my cystouteroscopy and to see a doctor, I feel like calling my Urologist to see if she can order blood work or imaging for further testing, to speed up the process. I'm sure she'll want to eventually. This is just taking so long, it's making me feel crazy. Now both sides hurt, I have what feels like heartburn but not? it's under my breast bone and I keep randomly bloating through out the day and doesn't happen with food, neither of them do. I'm peeing so much but my pee is cloudier than usual or smelly. It's a nightmare.

My doctors just tell me it's bad to take that much but doesn't offer anything else or suggest anything. Paracetamol doesn't work for my pain idk why. Anti inflammatories do. I'll try it though. I'll try anything. I'm lost in all this today, so overwhelmed.

I just push myself as much as I can all day, some days I do okay, and some days I stay on the couch. My girls don't understand, they just have no idea. I feel guilty and helpless. Idk how I cope or if I cope. I cry every night once they're in bed. It's so hard. I feel like whatever this pain is, it's killing me. It's completely taken my life.

Thank you for being a support to me. You have no idea the difference it makes.

[Wishingwellness]

You might see an endocrinologist. Have them check that your hypothesis and pituitary are working good. Not having all your hormones working well can cause the rest of your body to fall apart and even kill you in some cases. Adrenal insufficiency causes low blood pressure and other things. Growth hormone deficiency, thyroid , estrogens, are just a few. When Hormones aren't there the body breaks down and can't protect itself. I have to replace growth hormone so I can rebuild new cells and keep from heart failure among other things. I have to take hydrocortisone 3 times a day for the rest of my life to save my life due to secondary adrenal insufficiency. I have diabetes insipidus, pituitary doesn't tell kidneys when to hold water or pee it out.( Pee a LOT and get dehydrated with DDAVP medication ). Dehydration can cause Adrenal Crises. Other pituitary hormones are expected to probably fail at some point. All this has caused a lot of bad things. Going through SEVERE. right flank pain sense June-28-17 to on going. Not a second without pain. No prescriptions have helped yet. Starting to look like some things in my body have gotten messed up due to the hormones still getting straightened out. It is a living nightmare. I hope you don't have this going on. But if you do there is help. It just takes a little bit to get medications at right levels and such. I hope they get you help very soon. And able to fix it , not just TRY to get the pain covered up. My heart goes out to all that go through the pain the Dr's can't figure out.

[Greeneyes79]

Omg!! We need to talk!!!! Your story is literally the same exact as mine!!

[DLAZ in reply to Greeneyes79]

I’ve heard of LPHS!! That’s awful you have that, I’m so sorry!! My pain turned out to be the huge kidney stone I had in there. I had surgery and had it removed and they found out I have abnormal crossing vessels and the ureter and the renal artery kink! The pain went away after surgery but then I got slammed with new symptoms and that was diagnosed- dilated Cardiomyopathy and the day before yesterday I was finally diagnosed with what’s causing all of this crazy stuff- Ehlers Danlos Syndrome! It’s a genetic connective tissue disorder!

[SqueakMouse in reply to DLAZ]

Oh, DLAZ, I'm so so happy to hear that your doctors have found at least one piece of the puzzle😍; you've been in my thoughts and prayers ever since your initial posts so long ago, for it was heartbreaking to read about everything you've been through, from the agonizing symptoms themselves to the unforgivable "treatment" that the medical system made you endure (ironically, i just made a comment in a post from earlier today about how indescribably devastating that experience is, with the suffering inflicted by an imperfect system only serving to increase and magnify the already significant suffering that is inflicted by the illness and its effects😢).

I am in awe of your strength and courage; most people would have (justifiably and understandably) given up--or cracked up😋😉--in the face of so much pain and rejection and lack of answers, but you managed to keep going for the sake of your children❤️ It is incredibly inspiring, and I admire and appreciate your example more than I can say😍

I did want to share some information that I thought could be useful for you😄. Studies have found that Ehlers-Danlos patients (along with APS/Anti-Phospholipid Syndrome/Hughes Syndrome and Sjogrens patients) are much more likely than the average person to also be diagnosed with an immune system disorder called MCAD/MCAS (Mast Cell Activation Disorder or Syndrome).

MCAS causes a lot of inflammation throughout the body, including the kidneys (I suffered from kidney issues for years before I was accurately diagnosed with Hughes and MCAS, with symptoms very similar to yours--the blood and protein loss, hydronephrosis, and biopsies that found IgA nephropathy/glomerulonephritis); in severe cases, every organ and physical system is affected, so it wouldn't be a surprise to see the myriad severe symptoms that you've been experiencing😢

The acute and/or chronic inflammation of the digestive tract can affect the body's ability to absorb nutrients, so MCAS patients are often deficient in things like calcium, potassium, magnesium, and iron, even if the patient is taking daily or high doses of supplements. And this imbalance can also affect utilize those nutrients properly, resulting in kidney stones, gallstones, and other abnormal accumulations of minerals😬

Like APS, MCAS is diagnosed with the help of a few very specific blood and urine tests, but they are not included on routine studies like CBC's (nor are they commonly included in the work-ups ordered by specialists; in fact, most medical practices--or even many hospitals😮!-- lack the forms or proper test tubes to send samples out for testing, much less have the capacity to perform the tests in-house😬), so the doctor has to not only be trained in the diagnosis and treatment of these diseases (so they're aware of their existence in the first place, and are able to not only recognize the signs and symptoms, but to order these unique tests), so a patient can literally go for years, undergoing countless tests and procedures and examinations, and still never get flagged or tested for these things😢

Also, I don't know if you happen to live in the US (and if so, where in the US you are😍), but after years and years of illness and surgeries and struggle, I have had the great good fortune to find one of the best doctors in the field (specializing in the disorders that I mentioned above, which are often connected: Ehlers-Danlos, Hughes, Sjogrens, MCAS).

Her name is Dr. Jill Schofield, and she's one of the pioneers in the diagnosis and treatment of these issues, with the added benefit of being a delightful person and a physician that's devoted to the well-being of her patients😋.

She just opened a new office in the Denver, CO. area, and if that's anywhere near where you live, and you're interested in making an appointment, I'd be delighted to give you the contact information for her practice😍 (one of her receptionists has Ehlers-Danlos too, which is evidence of just how experienced and interested she is in this unique subset of rare disorders😉).

But if you're not within traveling distance of Denver, I'd be happy to forward you the links to some of the best studies and research papers and helpful websites on the subject, which Dr. Schofield has shared with her patients😍

In the meantime, best wishes for continued recovery, and hopes that you feel better and better with each passing day❤️

[Greeneyes79]

Have you had your gallbladder checked? My CT and ultrasound were fine but I think I need to get a HIDA scan to see if it’s functioning properly. I have debilitating right flank pain the wraps around to my front. Kidney looks fine but I have stones and have passed a few before. I also found LPHS which in your case, would make sense. It’s Loin Pain Hematuria Syndrome. No one knows much about it but it cause horrible chronic flank pain and blood in urine.