Feature Image sourced from:
Dear Pain Matters readers,
You may have heard a friend or family member say that they have an intense pain in their chest, upper right or mid abdominal area, just below their breastbone. Alternatively, they may feel pain in their back, right shoulder blade or in between their shoulder blades. They may feel sweaty, nauseous and an urge to vomit. They may have to lie down due to pain, especially after a rich and fatty meal.
Patients may not understand why this is happening to them. Could it be back pain, indigestion, ulcers or irritable bowel syndrome (IBS)? Or are they simply over-reacting to a spicy meal?
What they do know though is that their pain is severe and repetitive. This pain may last anywhere from a few minutes to several hours.
Here’s a thought:
Could gallstones* be responsible for the pain? If yes, then the severe pain attacks will likely persist until properly treated. Imaging via ultrasound, CT and/or MRI is necessary to rule out the possibility of gallstones that may otherwise lead to a blockage in a duct or gallbladder inflammation (cholecystitis).
If present, gallstones (and gallstone pain attacks) usually do not go away on their own. Surgery to remove the gallbladder may be necessary. Alternatively, if only 2-3 gallstones are present, shock wave treatment plus medication may offer relief from pain (although there is a risk of recurring gallstones) (more later).
TWO PATIENT STORIES
Denise Fernholz, Germany
Denise Fernholz, an editor in Germany, had severe pain attacks for 4 long years. Despite exclusively seeing her family doctor for 4 years, her symptoms were never taken seriously nor was any ultrasound test ordered. As such, Denise had no idea that excess gallstones were the cause of her excruciating pain.
Denise first felt an intense pain emanating from her breast area when she was 17. She attributed this pain to her tight-fitting bra. However, her pain only became worse after she removed her bra. Panicking, she thought she was having a heart attack. She felt better after laying down for an hour or so.
After her doctor ruled out any cardiac issues, it was thought that she may have done something to her back. Unconvinced, Denise hoped for the best anyway.
However, the severe pain attacks kept returning. Her pain attacks were so unbearable that they rendered her bedridden during these episodes. Denise felt like she was going to die. Her parents always wanted to call an ambulance but Denise resisted. By now, Denise was convinced that she was ‘only suffering from back pain’. She was worried about being ridiculed by paramedics for ‘calling an ambulance for back pain only’.
Instead, Denise continued to see her family doctor who regularly performed his manual adjustments.
One day, Denise had an MRI that, sadly, did not elucidate the cause of her pain.
As such, Denise was told that ‘her pain was likely psychosomatic’. She was asked if she had a lot of stress in her life. Alternatively, ‘did she do drugs?’ Her answer, ‘No.’ Denise was then asked, ‘Are you sure?’ Her answer, ‘Yes, damn it, I am sure!’ Denise added, ‘Can you please prescribe something stronger for my pain?’
Denise thought that it seemed rather convenient to simply attribute pain as being psychological in origin if a doctor can not find anything wrong with a patient.
Nothing was offered other than Ibuprofen. Denise felt that no one was taking her pain seriously. Her doctors simply did not believe her.
By now, Denise was in her early 20’s.
Denise’s pain attacks would often occur on special days such as birthdays or while away with her girlfriends. After pizza, Denise would have to lie down in pain. Then she’d go to the toilet to vomit. Her concerned friends were tempted to call an ambulance. However, by now, Denise had become accustomed to her pain attacks.
Because she’d been told countless times that ‘her pain was due to back tension’, that she was otherwise healthy, that she was ‘merely imagining her pain’ and that ‘her brain was simply fabricating pain to avoid having fun’, Denise even started believing these so-called ‘reasons’ for her pain.
It was much later when Denise finally made a connection between pizza and pain.
Until then, Denise’s doctor had prescribed gymnastics and sent her to an orthopedist. Denise was urged to do more sport and given new insoles for her shoes. She even bought a new mattress for her bed.
Guess what?? None of this helped with her pain attacks!
Four (4) years went by.
At times, Denise was pain free for a month. At other times, her pain attacks would occur several times in a week. However, not once did Denise call an ambulance.
One day, Denise moved to another country to study. She regularly returned home to visit her parents. While home, she always returned to her trusted doctor for ongoing pain treatment. Denise did not want to seek an alternative opinion from a new doctor or hospital for ostensibly back pain in a foreign country where she studied. After all, Denise had no reason to doubt her doctor’s opinion that she had back pain.
The turning point:
Despite being sceptical of alternative medicine, Denise was finally convinced by her friends to see an osteopath. She felt strange when the osteopath placed his hands on her body.
Denise noted however that the osteopath was the first person to take time to do a proper medical history. Denise told him about her pain, the vomiting and her doctor’s ‘diagnosis’.
Thereafter, the osteopath was quick to conclude that Denise’s pain did not come from her back, but rather, from her organs.
During her next visit to her doctor, Denise insisted that he check her organs.
Then came the moment of truth! An ultrasound clearly showed that Denise’s gallbladder was chockablock full of very small gallstones!
Diagnosis: Biliary colic, aka gallbladder attack or gallstone attack.
Because her gallbladder was full of very small gallstones, Denise would feel excruciating pain every time a gallstone would exit her gallbladder and force its way through the bile duct.* Generally, this would occur after a fatty meal (e.g. pizza).
Denise’s doctor thought that her newly-revised diagnosis was rather strange given that she was young and not overweight.
Denise, on the other hand, was ecstatic to have finally received a proper diagnosis after 4 long years of suffering due to pain attacks! FINALLY, A CORRECT DIAGNOSIS! YIPPEE!
Treatment: Gallbladder removal surgery
While in hospital during her gallbladder removal operation, everyone was surprised by her gallstone story. After all, even young, slim women and children routinely presented with gallstones these days. Furthermore, gallstones were usually easy to diagnose via ultrasonography.
Denise was merely grateful that her gallstones were finally being removed forever.
The good news:
After 4 long years of sporadic and intense pain for ostensibly back pain, Denise finally received a correct diagnosis. Shortly after, she underwent effective treatment involving surgical removal of her gallbladder. This led to complete relief from pain (Fernholz, 2018).
Fiona Tapp, a British Freelance Writer and Educator based in the US
Fiona Trapp first became aware of an intense pain in her breastbone after ordering a huge amount of Chinese food one day. Thinking that her pain was due to eating too much, she went to lie down in the hopes that her pain would pass. Instead, her pain got worse as it spread from her chest into her stomach and back. Fiona felt as if an iron bar had impaled her from the front of her ribs and straight through her back. Her then-boyfriend (now-husband) tried his best to help by massaging her in between her shoulder blade area.
While enduring excruciating pain for a few hours, Fiona thought that she was having a heart attack. Fiona’s pain finally went away after vomiting and she fell into a deep slumber.
Sadly, this was not the last of her pain attacks. Instead, these pain attacks arose at least once every 2 weeks over the next 5 years. Her severe pain attacks in her chest, stomach and back would wake her up in the middle of the night. As she cried out in pain, her partner would also be awakened.
Tragically, Fiona went from one misdiagnosis to another.
Fiona’s general practitioner (GP) first suggested that she keep a food diary to help identify any food allergies. However, her pain attacks would persist regardless whether she drank water or indulged in junk food.
When her friends and family suggested that she might have an ulcer, Fiona returned to her GP. However, after saying it was ‘just indigestion’, he prescribed antacids (which, of course, did nothing for her pain).
Fiona decided to get a second, and even a third, opinion. Her third doctor prescribed esomeprazole pills daily for stomach acid. Of course, these pills also did nothing for her pain attacks.
Upon returning to her GP, Fiona discovered that a new doctor was available to see her instead. This doctor was energetic, empathetic and cheerful. Moreover, after reviewing her history and doing some checks, he suggested that there may be more going on than ‘just indigestion’. He then arranged for Fiona to do some blood tests and an ultrasound.
Guess what happened next? You guessed it! Finally, Fiona received a proper diagnosis after 5 long years of pain attacks and vomiting! Whew!
Fiona was finally diagnosed with ‘a lot of gallstones’ in her gallbladder, an organ next to her liver that holds bile until it is released to help digest food.* These gallstones were blocking her bile duct as well as causing pain attacks and vomiting episodes.
Gallbladder removal surgery was recommended.
After awakening from surgery to remove her gallbladder, her surgeon said that her gallbladder was FULL of gallstones. He had never seen so many gallstones in his entire life! He also added that he was sympathetic for all the pain that she had endured over 5 years.
Fiona was simply grateful that a correct diagnosis was finally made and that gallbladder removal surgery was done. Finally, her severe pain attacks ended after 5 long years!
Please see Fiona Tapp’s inspiring story for more details and advice:
(Tapp, 2017; Stinton & Shaffer, 2012).
DIAGNOSIS AND TREATMENTS FOR GALLSTONES
Gallstones are not rare. They can affect both young and healthy people as well as the young-at-heart. Between 10% to 15% of adults in developed societies have, or will have, gallstones including 25 million Americans.
Despite being common, gallstones are sometimes mistaken for back pain, food allergies, ulcers, indigestion, excess stomach acid and even irritable bowel syndrome (IBS).
Ultrasonography is done to diagnose gallstones. Other imaging techniques (e.g. CT, MRI) may also be useful.
Two Treatment Options
(1) Gallbladder Removal Surgery (Cholecystectomy)
Treatment usually involves gallbladder removal surgery (cholecystectomy).
Risk of Ongoing Pain Despite Surgery in Some Patients
After gallbladder removal surgery, some patients may still suffer from ongoing pain. As such, the risk of a poor outcome following surgery needs to be discussed with patients prior to surgery (Dijk et al, 2019; Guest & Søreide, 2019; Rapaport, 2019).
(2) Extracorporeal Shock Wave Lithotripsy (ESWL)
Alternatively, extracorporeal shock wave lithotripsy (ESWL) may be offered if there are only a few gallstones (i.e. no more than 3). This treatment involves generating sound waves (shock waves) from outside of the body. Produced by a machine called a lithotripter, these shock waves are aimed directly at the gallstones until they shatter. Medication is usually necessary to dissolve the remaining shattered fragments.
While shock waves shatter gallstones, they are not harmful to muscle, bone or skin.
Risk of Recurrent Gallstones
Despite ESWL being less invasive than gallbladder removal surgery, there is a risk of recurrent gallstones (mydr; Barhum, 2018).
What lessons can be learned here?
According to Denise Fernolz, if a diagnosis and treatment(s) are not effective, please urgently seek a second medical opinion. Importantly, always trust your own instincts and feelings (Fernholz, 2018).
According to Fiona Tapp, if your gut feeling tells you that there is something wrong with your body, please persist in trying to get to the bottom of this. Please don’t ever give up.
Most doctors do want to help their patients get better. However, sometimes it is up to the patients to also insist on getting further tests done right from the start.
Patients have to learn to become better advocates for their own health. They have to learn to become more assertive and take responsibility for their well-being. After all, they know their own bodies better than anyone else does.
Patients should never feel as if they are wasting their doctors’ time. After all, that is what the doctors are there for – to help diagnose medical problems.
Patients and doctors need to work together as a team to properly diagnose medical problems including the cause(s) for any pain. A patient-doctor team approach will lead to more effective and timely treatments as well as better results and outcomes.
If necessary, patients may need to pursue a 2nd, 3rd or even 4th medical opinion (as Fiona did).
I hope these 2 stories inspire.
* Gallstones (aka cholelithiasis) are solid masses, or crystals, of cholesterol or pigment that sometimes form in the gallbladder. Gallstones may be as small as a grain of sand or as big as a golf ball. While gallstones are asymptomatic in some people, they may cause excruciating pain in others.
Bile is a yellow-green digestive fluid made in the liver and stored in the gallbladder. During digestion, bile is released into the bile duct and upper part of the small intestine to help break down the fat in food.
(1) Tapp, Fiona. I Lived in Hell for 5 Years Due to a Misdiagnosis. Healthline (9 June 2017).
(2) Gallstones: Treatment.
(3) KevinMD (15 March 2005).
(4) Rapaport, Lisa. Gallbladders may be removed too often. Reuters (10 May 2019).
MEDIA (In German)
(1) Fernholz, Denise. Vier Jahre Schmerzen – Weil ich meinem Arzt vertraute. Protokoll einer Fehldiagnose – Angeblich nur Rückenprobleme. Stern (20 April 2018).
PEER-REVIEWED SCIENCE PAPERS AND ARTICLES
(1) Gallstones. Mayo Clinic.
(2) Fletcher, Jenna. What are the most common gallbladder problems? Medical News Today (16 Nov 2018).
(3) Stinton & Shaffer. Epidemiology of gallbladder disease: cholelithiasis and cancer. Gut Liver (2012); 6(2): 172–187.
(4) Barhum, Lana. Lithotripsy for stones: What to expect. Medical News Today (3 July 2018).
(5) AIHW. Gallstone lithotripsy. Australian Institute of Health and Welfare (1 Dec 1988).
(6A) Dijk et al. Restrictive strategy versus usual care for cholecystectomy in patients with gallstones and abdominal pain (SECURE): a multicentre, randomised, parallel-arm, non-inferiority trial. The Lancet (26 Apr 2019).
(6B) Guest & Søreide. Pain after cholecystectomy for symptomatic gallstones. The Lancet (26 Apr 2019).