Can’t diagnose my pain 😞: Hi everyone, This... - Pain Concern

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Can’t diagnose my pain 😞


Hi everyone,

This is my first post to this forum. So two weeks ago I collapsed with awful pain in my right side to bad I couldn’t move. Since then, been to hospital three times and doctors countless times with the same pain. They can’t diagnose!! They initially thought it was appendicitis then ectopic pregnancy which I’ve had before and did an X-ray and ultrasound and found nothing but a small cyst on my right ovary.

It still really hurts but no one is paying attention. I’m off work for two weeks with it and feel so stupid texting my boss everyday to tell her that they don’t know! Feels like I need to justify and have answers for this pain to have two weeks signed off but they won’t help me!! I’m worried it’s going to go on for ages and no answers!!! My Dad has had colitis for 20+ years I’m worried it’s something like that, I’ve had problems for years but never a diagnosis! Any help would be fab! X

14 Replies

Welcome.. so sorry ur r having to deal with all of this. You have definitely come to the right place..and everyone is here to help n lend an ear if needed. Don't give up trying to find answers.. sometimes it can take awhile until u find the right doc... I can tell u that from experience.Best advice.. write everything down.. even if u think its small or trivial..its usually a clue to ur medical puzzle. The more info u can provide the docs the better they can help u. If u don't feel good about what they are telling u.. get a 2nd opinion or a 3rd. For me.. its all about the gut feeling..because we know our bodies the best!! Best of luck to you new friend! :)

Thank you for your reply! I just feel really silly keep going back to hospital to be told they can’t diagnose it and it will probably go away on it’s own! And I’m worried about work and being off and not being able to say what it is except abdominal pain! I will write everything down, thank you for the advice!

If u have to..go to different hospital.if ur gut is telling u something different than what they r saying..go with ur gut.hope u get answers :)

Hello there Kirsty😃❣️, my name is SqueakMouse, and it's delightful to meet you💗🐭💗! I'm so sad and so sorry to hear about the many challenges and hardships you've endured over the last couple weeks (and if I understood you correctly, some of these symptoms have been troubling you for months or years beforehand😞?)

I can absolutely empathize with the pain of contracting an illness that isn't easily diagnosable, and with the (sometimes even worse😯!) pain of having your sanity questioned by medical professionals (and/or family and friends that fall in line with the cultural commandment: "Thou shalt believe the doctors and their opinions, not the patient and her experience"🙃😋😉). It's the very definition of "adding insult to injury", and the heartbreak that results is immeasurable and indescribable😢

One of the more frustrating, lengthy, and clumsy paths to diagnosis involved a rather rare illness that few doctors had even heard of, much less knew to look for😬 I would be delighted to share the details of that experience (including diagnostic tests, treatment, and outcome) if you think that would be helpful for you(?)

In addition, I've actually been diagnosed and treated for several of the issues you mentioned, and quite a few other abdominal issues (appendicitis, cysts, gallbladder, abdominal bleed, pancreatitis, pancreatic divisim, gastric and esophageal ulcers, gastroparesis, swallowing issues caused by nerve damage from a stroke, enlarged spleen, VZV infection...😬😳).

I'm not publishing this laundry list of GI disorders to complain (in fact, the diagnoses have made me aware of quite a few really uncommon and strangely spelled words, which has been a real boon for my Scrabble game😂😉!); in truth, it was exhausting to contract these illnesses, and to suffer with them while I was enduring the equally exhausting process of finding an accurate diagnosis and effective treatment☹️...and strangely enough, bringing those times and these diagnoses to mind now resurrects that exhaustion along with their ghosts👻😬

But I wanted you to know that you are not alone in your experience, nor does everybody judge you or dismiss your pain (like other people in your life have most shamefully, inaccurately, and unjustly done these last several weeks😳😞😢)

...and unfortunately, suffering with rare/difficult-to-diagnose/severe illnesses can be such an isolating, guilt-ridden, self-doubting and self-criticizing experience, since the vast majority of our society, culture, medical profession, doctors, friends, and family have bought into the Hollywood myth/ideal, where even the sickest patients with the most confounding symptoms are not only diagnosed but cured as well by the end of the program's run-time😋

(Exhibit A: "House, MD."😁). It was bad enough when critically ill patients with unusual diseases were successfully diagnosed and treated on famous medical dramas like "ER", "Chicago Med", "The Resident", and yes, even outside-the-box efforts like "Dougie Howser, M.D." and "Dr. Quinn, Medicine Woman"--which sent the message, "No matter how sick you are or how rare the disease, some pioneering genius of a doctor who is devoted to their patients' well-being above all else will absolutely solve the puzzle within a relatively short amount of time, and will unfailingly treat the patient with respect, kindness, and great care throughout the process.

Furthermore, according to shows like these, there is no "NO" in medicine; in other words, if the exact identity of your illness eludes your treating doctors, despite their best efforts and most educated guesses and the latest greatest imaging techniques, they will not give up and lay the blame for their failure at your feet, declaring that you "can't actually be THAT sick if it isn't showing up on our tests, so now having you take up a Hospital bed is just wasting time and resources that could be better spent on a patient who really IS sick."😳🙄😢

Talk about a debilitating illness😳😋😉! And given my intimate familiarity with these less-than-idealistic characteristics of modern medical care, I was really eager to see what the creators of "House: MD" would do with their unique interpretation of the relationship between doctor and patient--particularly, the relationship between a patient who was in that particular hospital under that particular doctor's care precisely because he or she has come down with an illness that was not only life-threatening, but up until that point, had also defied every attempt to diagnose it.

If you haven't seen the show, this Dr. House was a selfish, self-centered, irascible, and by most Hollywood standards, the antithesis of a heroic healer or leading man😬😋. Nevertheless, his drive and curiosity and love of a challenge meant that he successfully diagnosed 99% of his TV-land patients--an outcome that's great for viewer satisfaction (and therefore, great for ratings too😉), but just a bit heartbreaking for those of us that suffer from a difficult-to-diagnose illness, and haven't yet met our "Dr. House", and as a result, continue to suffer ever-increasing symptoms, and ever-increasing self-doubt, self-blame, and self-criticism, as doctors or friends or family members that were so supportive and validating and unwavering in their belief in you and the realty of your experience refer you to someone else, or go back to their own lives and responsibilities.

So it's no surprise that we patients get the message that (1) You can't really be ALL that sick or suffering THAT much pain, or the doctors you've seen so far and the tests that they've run would surely have discovered SOME answers; and (2) The fact that you claim to be so disabled and continue to insist that you're suffering so much pain that you can't attend to your usual social and professional commitments/responsibilities--despite the fact that multiple ER visits, doctor appointments, and countless tests have failed to turn up an obvious answer--means that YOU are the problem, and not the doctor, the tests, and/or the working hypothesis (if a person claims to be really sick but ER work-ups and doctor visits can't uncover a straightforward cause and cure, our society "trains" us--indirectly, carefully, quietly--to switch allegiances from our loved one to their treating doctors😮😞

Because "doctors are smart, right?" And "modern technology can diagnose ANYthing--if there's anything to be found, of course.😬" And "young people don't get seriously/chronically/incurably ill, not in THIS modern society, with it's cutting-edge tests and it's cutting-edge research and it's cutting-edge medications and treatment if that person had had those cutting-edge medications and cutting-edge tests from some cutting-edge doctors and they are neither diagnosed nor cured, IT'S THEIR FAULT. They either WANT to be sick (consciously or unconsciously) for any number of reasons--to get attention, to be excused from work, to create drama--or they do want to get better but aren't willing to put in the effort/time/discomfort it takes to heal."

But "either way", "I would be harming my friend if I continued to support them or to believe them wholeheartedly and unconditionally--because I'd be supporting the illusion that my friend is sick, and therefore enabling her efforts to play the victim role--so I either need to have a frank talk with my friend and force them to see "truth", or--if they continue to insist that something's wrong with their health, and that they know this for sure despite what the tests have said so far--I will have to distance myself from my friend, and send her a strong and immovable message that way. Tough love. It hurts me to do this to my friend, but it really is for her own good. After all, that's what her doctor says, and everyone knows that doctors are always right." 😳😳😳😂

ANNNNN-EEEE-way...😋😉. I'm just trying to say that I can empathize with the challenges you're going through (both spoken and unspoken😍), so if you ever have the need to rant or cry or become frozen in fear or any of the gazillion emotions, thoughts, and actions that circumstances like yours can trigger, I'm here to listen--without judgement, without comment (unless you request that specifically😋😉), and without any demands for a specific outcome ("Stop crying"/"Don't be scared"/"It's not that bad", etc.😬😮😉).

In fact, I'm eager and willing to volunteer for the job of head cheerleader😍--basically, validating the truth of whatever you're experiencing, and honoring all the many worthy qualities you're exhibiting (courage, perseverance, faith, living in the moment...and those are just a handful of the many MANY wonderful qualities that it's evident you possess😄), while helping you drown out the critical comments and cruel judgements of people who should know better, and since they haven't walked a mile in your shoes, who shouldn't hold themselves up as the authority on the subject of severe/chronic/difficult-to-diagnose illness😳😬😉

And I'd also be delighted to offer some insights (again, I'm not a trained medical professional, but I have been a professional guinea pig for multiple hospitals and specialty departments😋😉, so I do have the learning born of those experiences that may end up being useful to you😍😉).

I would just need a little more detail, if you're comfortable sharing it (I'd be happy to give you my private email address too, if that would be more appealing to you😍).

You mentioned you'd had a few tests; can you recall what they were (endoscopy; colonoscopy; ERCP; motility study, e.g. a "Smart Pill"; biopsies; SIBO; celiac biopsy, etc.).?

Is there anything they've officially ruled out?

Any possibilities they're considering and might schedule investigative tests to pursue?

You described your pain as unusually severe, confined to your right side.

What is the quality of the pain (cramping, stabbing, aching, pressure, burning, tight)?

Where exactly is it located? (E.g., the entire right side in the front of your abdomen, from rib cage to hip bone? Just one spot localized around your hip bone? Does it ever radiate through to your flank, mid-back, or under a shoulder blade? Does it ever expand to include your entire digestive tract--left side, center abdomen, lower abdomen--and if so, what if anything triggers that expansion?

What if anything makes the symptoms worse, and which symptoms specifically? (Eating certain foods, eating anything at all, lying down at night, wearing certain clothes?)

What if anything makes the symptoms better?(prescription and/or OTC/over the counter medicines--and if so, which brand and what dose taken how often?; hot baths or a heating pad; ice packs; etc.)?

Can you recall a triggering event just before this current bout of illness began two weeks ago? A life event? Dietary change? Injury?

What kinds of specialists have you seen, what tests did they run, and what have they ruled out?

Were there any abnormal findings (even if the doctors didn't think they caused your current symptoms)?

At your initial office visit with each new doctor--before any tests were run--what did they say they believed COULD be the problem? Were there any disorders that the doctor suspected right away?

What changes in your condition have you noticed over the past two weeks, if any? Are you getting worse? Staying the same? Is there anything you can do (medicines, stretches, heating pads...) to soothe the pain when it's flared up?

Do you have any systemic symptoms (meaning, symptoms that appear to be separate from your primary complaint of severe right sided abdominal pain?-- including anything and everything from fevers, weight loss or gain, headaches, weakness, tremors, vision changes, increased fatigue, rashes, acid reflux, altered appetite, neuropathy)?

What were the symptoms you briefly mentioned as somewhat chronic but less severe than the pain currently is now? How long did it last? Was it exactly the same as what you're experiencing now--same location, same triggers--but less severe? Did any doctors identify the pathology with a specific diagnosis?

What if anything was prescribed to you, either pharmaceutical or over the counter? What ( if anything) helped?

What if anything helped you cope with your symptoms well enough to attend school, hold down a job, and otherwise avoid becoming totally disabled and housebound?

If you could list your symptoms from most disabling to least troublesome, what goes at the top of that list?

I know these are a ton of questions, and I'm really really sorry😮😞. I just wanted to be able to give you as much help as I can, and to give you help that's (ideally😄😉) useful and effective 😍😍

Meanwhile, know that you're in my thoughts and prayers😍❣️ Feel free to ask me any and all questions on any and all subjects; I'd be happy to try to help💚❤️

Hi there,

Sorry I am only just replying I’ve just got up and read this (tiredness being one of the troubles i am having a the moment!)

So the pain was severe two weeks ago coming from my lower right side. I had been to the toilet at about three in the morning after having pain that was quite bad since before I went to sleep all across my lower pelvic region. When I stood up to get off the toilet (sorry if TMI!) I found a sharp pain going up my right side radiating from my lower right side just inwards from my hip. I tried to stand up a couple of times but the pain was so bad I had to shout for my husband. As it got progressively worse I found myself stuck on the landing curled in a ball with out being able to lift my torso. My husband (Jonny) took me to A&E.

After my husband struggled to dress me (I couldn’t move the leg either with out awful pain) and I crawled down the stairs, I used the car door and the bannister to support myself to get into the car. I couldn’t sit on that side so I held myself up against the window with my face into the heater.

On arrival my husband needed to park but the car park is a good walk away, so he dropped me off right outside the entrance and quickly parked. I was crying and breathing very quickly at this point while holding my abdomen when a woman from admissions and a man from an ambulance saw me and picked me up and put me into a wheelchair. The ambulance man touched my abdomen and said I think you have appendicitis. He took me straight through and attached me to heart rate and pulse monitor.

From then on hours went by. I had a cannula wrongly and painful inserted which was tutted at by another nurse. A doctor eventually came down but was unsure of what to do with me. I went up on to the ward which panicked me as last time I was there I had to have emergency surgery for an ectopic pregnancy (this January) and I hadn’t been to hospital before this ever.

On the ward i had bloods done, observations that said my blood pressure was low which seems to be a recurring theme it was 70/50 this time. I had an X-ray and and ultrasound which showed a 2.2mm cyst on my right ovary which is apparently under developed so I don’t know what’s happened there. We had IVF in the summer so maybe it triggered something. Other than that they cannot find a cause. I went back again to same hospital, been to another one. My doctor sent me up for a CT scan which never got done they said it was a skeletal problem and I should go home and have a massage from my husband!!! 😡

So the pain is now mostly located in the lower and upper abdomen by my ribs and feels like something is about to either burst or twist. It’s made worse when I go to bed I cannot lay on either side. I have shooting pains up my shoulders/ tips of shoulders/ forearms and neck and jaw line. Pain was also in my chest but that has subsided now. I have felt dizzy and lightheaded. I wouldn’t say anything particularly brings on or helps the pain it’s always there just worse than others sometimes. Especially at night.

Any help or thoughts would be great. Thank you for your time x

You have described my life. Thank you for really "getting it".

I hope you’re okay! I am waiting from a phone call from my doctor to ask her about possible next steps. I just feel stupid being off work. Sometimes I feel okay and feel like I could be there but then I try to do bits and feel horrendous and know I couldn’t! It’s that that’s making me stressed along with no diagnosis!

Oh my goodness, Tracy, thank YOU so much for your so very kind and thoughtful comment...your words really touched my heart😍 But I'm also very very sorry that the life I described (and therefore your life, and my life, and perhaps even the lives that many others on this forum endure, much as I wish that wasn't the case😢) is filled with so much unnecessary suffering😢😢...of course, it's debatable whether ANY suffering is necessary (it certainly seems to be at lot less so when you happen to be in the middle of it, yeah?😋😉), but I think a good many folks would agree with the suggestion that suffering inflicted upon a patient (by mistaken or misguided or misinformed--or simply miserly and miserable😂😉!--physicians, friends, family members, or medical professionals in any capacity) in the form of doubting them, disbelieving them, ridiculing them, dismissing them, shaming them, or a thousand other tiny cuts could justifiably fall under the "unnecessary" category, especially when that patient is already suffering with their illness and its effects....the latter form of suffering is often unavoidable, but the former almost always is😬 And it's really such an easy fix, isn't it? In this particular circumstance (and in pretty much every other, too😉), old-fashioned kindness and courtesy have far more power than they are ever given credit for😋😉 In truth, most of us don't expect our doctors to have all the answers, or to otherwise be superhuman; if they don't know what's causing our symptoms (following a sincere and thorough work-up, of course), a simple phrase like, "I'm so sorry you're going through this; I don't know what's causing it yet, but I won't stop until I do, or I'll send you to someone else who can," goes a really long way😍 It's the doubt or blame or abandonment that wounds much deeper than the lack of diagnosis, in my experience...if we could eliminate those particular societal ills, I think our experience of illness would involve a lot less suffering😬😋😉. My thoughts and prayers are with you, and my support and honor too😍

You haven’t said whether it’s high or low on your right side and if the pain is there constantly or does it come and go xx

Have you been tested for thyroid, adrenal or liver problems? I also suggest a full panel blood test for your nutritionals. A deficiency in any number of vitamins or minerals could be causing your problems. Digestion problems could also be a problem. Hope you feel better, my friend soon, my friend....

Doctor is urgently referring me to gastro clinic!

Oh my goodness, thoughts and prayers are with you, as are my hopes and wishes that they determine the cause of your distressing symptoms, and provide effective relief of your pain❤️ Never feel ashamed or guilty for needing help; it sounds like you have good reason to seek assistance, and more than enough cause to pursue further investigation. Remember, you're not alone in this--you've got a forum full of cheerleading supporters on your side😍

Hi Kirsty, it's SqueakMouse again💗🐭💗 Just wanted to let you know I'm thinking if you, and trying to send you as many good vibes as I can muster 😍 You've got a lot of people cheering you on, and beaming love and support across the miles❤️💚

Dear Kirsty:

It sounds like your situation requires a DIFFERENT approach than one that will be taken by anyone you might consult on the conventional care side of the spectrum. That can be quite intimidating, since you seem to place the most trust in conventional care, but I can assure you that there are MANY forms of care available that you might never have heard the first thing about. And not "flighty" sorts, either - solid professionals!

First, I HIGHLY recommend you seek Chiropractic care - this is a well-trained professional who is EXPERT on the proper alignment and motions of the skeletal structure, and it often produces AMAZING results when NOTHING else can touch the problem. Second, if that does not produce the benefits I hope it will, that doctor will probably refer you to someone they know who CAN successfully address your complaint.

Let me know if you need a referral to a Chiropractor, and WHERE you are, and I will do my best to find you a local practitioner.

p.s. Re: your dad's colitis - I myself suffered for many years with that, and conventional care never did me any good, other than partially and temporarily. I now KNOW what causes that, and if he is interested I can probably help him overcome much of the problem.

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