23yet 59na8 ry66n zhfka 2ed3f 2638y azhy4 5n4er 2zasr nb3yr 3hy69 5s5tr nyazd 5rtty 8ef9z zn3i8 eaf36 etk9a 4ky58 3ykhd 8ehde Hiatal Hernia or something else? |

Hiatal Hernia or something else?

2021.10.28 00:52 Bayr25 Hiatal Hernia or something else?

Stats: 44F 5'6" 240 lbs caucasion, do not smoke or take drugs, I drink occasionally but do not drink excessively
Medical Issues: Hypothyroidism, Type 2 Diabetes, acid reflux, obesity, gallbladder was removed 10+ years ago
Medications: Levothyroxine 50 MCG, Atorvastatin 20MG, Metformin 500MG, Omeprazole 40MG, One a day vitamin and Calcium/D3
Primary Complaint: Extreme epigastric pain that radiates to my chest, back and shoulders with difficulty breathing
First I just want to say thank you for reading this. I'm so sorry this turned into a huge story so I wrote this TLDR version and put it in front of the longer version because I know people are busy:
Starting around the first week of August 2021 I have had severe epigastric pains of varying intensities between a 6 to a 10 on the pain scale. They last between 15 minutes to an hour. Sometimes the pain gets better after 15 minutes and then gets worse again. I have difficulty breathing during them, sometimes the breathing being so bad I feel as though I am actively dying. ER doctor said possible Diaphragm Spasm causes this. They only ever happen first thing in the morning before eating/drinking within 15 minutes of getting out of bed and happen about once a week or week and a half. Had EKG, CT scan with contrast and blood tests to check for clots and heart, liver, pancreas function and all were normal. Is this a Hiatal Hernia that becomes strangulated when I sit/stand up in the morning and then gravity fixes the strangulation? Will an endoscopy 100% catch a Hiatal Hernia if an organ isn't currently trapped in it? Should I head to the ER each time I have the pain/breathing difficulty in case the pain doesn't stop? Why did my Gastroenterologist tell me it couldn't be that?

Non-TLDR version:
The first two attacks were the most mild. The third attack had me headed to the hospital because the pain was so severe and I was having trouble breathing so I thought it was a heart attack. The type of pain is very similar to when I had gallstones 10+ years ago, sort of aching or crampy and squeezing, but starts in the center of my body instead of the right side and then follows the top line of my diaphragm across my chest. The breathing trouble is the same as when I had gallstones as well, it feels like I've had the wind knocked out of me and cannot breathe in or out effectively. This is not anxiety, this feels like my diaphragm is not working even though I am focusing on breathing normally. The ER doctor I had seen 10 years ago for my gallstone attacks had a name for it but I don't remember what it was. Well the pain stopped and I felt completely fine when we were only halfway to the hospital so we went home and I made an appointment with my doctor. Over the next five days waiting for my appointment something in my upper left quadrant felt swollen (spleen? pancreas?) and I had a kind of throbbing pain there, diarrhea (which is extremely unusual for me), as well as this really odd sensation that my intestines were cold (not that cold liquid was in them but that cold liquid was flowing around them) sort of feeling like the circulation had been cut off. Side note, this was the only "attack" that had those specific after effects, none of the others had them other than a general soreness and feeling worn out for the day. I explained the severity of my symptoms to my doctor and I do not think she heard me at all, she said it was acid reflux or indigestion or gas or possibly an ulcer even though the pain didn't coincide with eating and the pain was never a burning pain. She upped my omeprazole from 20 to 40 mg, put me on a BRAT diet, told me to not take any ibuprofen/asprin, ordered blood tests and told me to call if that didn't help so she could order more tests. The blood tests were normal except for a slightly elevated white blood cell count (I wasn't sick so I don't know why). A week and a half after strictly following the diet (when someone tells you food is causing you pain you are afraid to eat), I had another attack that was even worse.

This fourth attack happened at 3:30am (nine hours since I had had anything to eat) after I had gotten up to use the bathroom in the middle of the night. This time it was so severe that I was sure it was a heart attack and my husband called 911. The paramedics did an EKG and told me my heart looked great and my pulse and oxygen were fine and asked if I wanted to go to the hospital in the ambulance or wanted my husband to take me. Meanwhile I'm in so much agony that I can't think let alone talk to them... to me it was just pain and breathe. Anyway, the pain got better and they left. I called my doctor the next day, she scheduled me for an ultrasound in two weeks and gave me a referral to gastroenterology which wouldn't be able to see me for three months! During those two weeks I researched everything I could about my symptoms to try to figure out how I could stop the pain or prevent it from happening. The only thing that made sense to me was Hiatal Hernia... even though it doesn't fully fit my symptoms unless it becomes strangulated and then it is an emergency. Considering my doctor wasn't alarmed and the paramedics didn't think it was an emergency then I doubted that was it. I couldn't wait two weeks dreading each morning because I might be in unbearable pain again so I started reading on how to "fix" it. I was already doing everything you are supposed to (eating smaller meals, avoiding heartburn triggers, no food five hours before bed, started losing weight (lost 15 lbs) and the head of my bed has always been elevated. I read an article on how to prevent hiatal hernia "discomfort" and I thought it was worth a try the next time I felt the pain coming on... bad idea. The morning of my ultrasound I was getting ready to leave when I felt a slight bit of pain. I desperately wanted to prevent the pain and wanted to get to that ultrasound so I followed the advice of that article. I stood on my toes and then dropped to my heels two or three times (I just now realized I never told the ER doctor that, I should have) and then the pain and difficulty breathing hit me so bad I could not breathe in. It was like something was physically holding my diaphragm in place and not allowing it to move. The pain was beyond anything I even thought was possible and I would rate it over a 10 if I could. I ended up going to the ER instead of the Ultrasound. By the time the Doctor saw me the pain was almost gone and I was breathing fine again. We live about 30 minutes from the hospital so it had been nearly an hour since the pain started. I had an EKG, CT scan with contrast and blood tests to check for clots and heart, liver, pancreas function and all were normal. Having her tell me that was so disappointing and frustrating. She said she thought it was an Esophagael Spasm. I looked up what that was (while she was out of the room) and that doesn't make sense either, I never get the pain when I'm eating and it sounds like that is primarily when you would have an issue. I mentioned to the doctor it didn't make sense the next time she came in and she said maybe it was a diaphragm spasm kind of like a charlie horse. I had asked if the CT scan showed a Hiatal Hernia and she said it didn't. She said she would give me a referral to Gastroenterology which I said I already had one but they can't see me for three months but she said it's different if the ER calls them so I got an appointment later that week and they let me go home telling me to come back if I have pain with trouble breathing again. Let me just say I was thankful she listened to me and got me the appointment, there just was not much she could do if everything was fine and my pain was gone. The gastroenterologist said it was probably GERD and I told him this was extreme pain with trouble breathing and that I thought it was a hiatal hernia and he said "no no, it doesn't cause pain unless it's impinged, but maybe it's an Ulcer"... I wanted to scream but he scheduled an endoscopy which I know is the next step. Of course that was three months away (now less). He then told me what everyone else keeps telling me, if I have severe pain (and they say severe like that's not what I've already felt) and trouble breathing then go to the ER. I did, am I just supposed to keep going every time? I can't get a second opinion or endoscopy sooner because I have an HMO and there are no appointments in network until December. I don't think he listened to me at all. He thought my primary complaint was acid reflux or heartburn. Everything that I'm reading says that when this is happening my organs could be strangulated (that is what it feels like) and that if it's not fixed quickly then it will lead to permanent damage and possibly sepsis and death... but I can wait three months for a diagnostic test and then who knows how long before I can get a surgery scheduled? After that attack I didn't have another one for nearly four weeks. I had made a few more small changes like not sleeping on my back, not allowing my chonky cat to lay on my stomach while I'm watching tv before bed, and I raised the head of my bed a bit more. When I had this last attack the pain was only about a 7 and I was able to breathe but it lasted an hour. The only thing that I had done differently was that I did notice that one time I woke up and was laying on my back instead of my side. Oh also, I had salmon for dinner the night before and one of the previous attacks had happened the day after eating salmon as well... I'm assuming that was coincidence since I found no other correlation with food but I thought I would mention it. 
So I am thinking that what is going on is that sometimes when I am sleeping part of an organ goes through the Hiatus. When I get up in the morning, gravity starts pulling everything down and sometimes the organ that went through the Hiatus gets pulled back down just fine and other times it gets stuck, is strangulated and causes pain. The stuck organ then continues being pulled and eventually gets pulled back down and that is when the pain stops. The third attack that I had was something on the left hand side that was probably strangulated more and closer to "emergency" than the others which was why I had lingering pain on the left as well as additional symptoms for five days. The rest of the attacks had just some mild pain the day after and that can be anywhere along that line between my abdomen and chest (left, center or right). My understanding of this means that eventually one of these attacks will not stop and will cause permanent damage to the organ being strangulated and could end up with sepsis or death. Does this all make sense? If so, will the endoscopy definitely show a hiatal hernia even if there is not an organ currently poking through the hole? Is there anything I can do to stop the pain? Should I head to the ER for every attack and then just go home if it stops before I get there since it stops being an emergency at that point? And lastly... why do none of my doctors think this could be a hiatal hernia that is occasionally strangling my organs? Or am I just completely clueless and there is something else that is causing this pain? 
If you made it to the end, thank you for reading and I hope you have had a good day!
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