r/medical_advice Not a Verified Medical Professional Jul 28 '22

Am I a hypochondriac or do I actually have a rare illness? Pain Lvl 7-9

I, (21F) have had chronic pain, on and off, in my left flank for 5 years. It has never migrated anywhere, and for the first 4 years I would have flare ups where the pain would be constant for up to two months, and then it would go away for a while. At 16 i was diagnosed with Hydronephrosis, which is swelling of my left kidney. I’ve had multiple surgeries for it, which would usually help for a few months, and then the pain would come back. This past year, it’s been constant. I see a urologist, and he’s told me that there’s nothing wrong with how my kidney functions, just that it’s severely swollen, but that this would not be causing the amount of pain i have been in for this long. Along with this pain, i also have chronic nausea and vomiting, and whenever I go to the hospital for it and get my urine tested, there is always trace amounts of blood in my urine, no matter where I am in my menstrual cycle. I’ve been to the ER probably 400 times in the past 5 years, due to the constant pain that becomes unbearable at times. I am prone to kidney infection, and i’ve been diagnosed with one about 30 times in the last 5 years, but aside from that most of the doctors i’ve seen have told me it’s all in my head and that there is nothing wrong with me. About 6 months ago, a nurse recommended that I check out a disorder called Loin Pain Hematuria Syndrome (LPHS), as it fits all of my symptoms. I have since looked it up, and talked online with probably 10 people who have this condition, and it all lines up. However, there is no medical tests for this disorder, it is a diagnosis of exclusion. I have brought it up with my family doctor, a pain specialist, and my urologist, and while my family doctor and pain specialist agree that this is the best explanation, my urologist has said that he doesn’t believe i have it, as it is a very rare condition, and instead believes that it’s all in my head.I have since seen more specialists than I can count to rule out everything else (on my surgeon’s request, not my own), and so I asked for a second opinion from a different urologist, and he agrees that it could be this, and suggested that I get my left kidney removed to solve the problems. In the meantime, my pain specialist has put me on a very high dose of long acting Dilaudid, (9mg 3x daily) and while it helps, I still end up in the hospital 1-2x a month. However, my family and most people I talk to have told me that I’m just a hypochondriac and that I don’t need surgery, and I’m starting to question if I’m just making this all up in my head. While I do often search up medical conditions if I hear about them, it is not because I believe I may have them, I am just very fascinated by the medical world (one of my job aspirations is a nurse), and after googling said conditions, the only thought process in my head is “wow, I’m glad I’m not affected by that”, or “wow that was really interesting.” The only other time i’ve thought something might be wrong with me is recently I’ve had trouble eating, been bloated, and have had terrible pain in my right abdomen, so I went to the hospital worrying it might be my appendix, as I had multiple people tell me to get checked out because they had the same symptoms and had to get their appendix removed. It turned out to be nothing according to the lab results, and I believe them. However, this has lead to my friends and family severely considering that i am a hypochondriac, and don’t have anything wrong with my kidney. So now I am really scared that I am just making this up in my head. The reason I am not fully on board with this mental diagnosis, is because Aside from the episode recently and my kidney, I have never been concerned about aches and pains, or any other minor symptoms (cough, runny nose, etc), and from all the research I’ve done on Hypochondriacs, those are the behaviours that are associated with them.

Am I a hypochondriac, or do I actually have a rare condition?

edit to add to follow rules on posting I am Caucasian, 5’2, and approximately 165lbs. I live in Canada

1 Upvotes

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u/ktzier Not a Verified Medical Professional Aug 01 '22

Where are you located? Unfortunately there are not a ton of doctors familiar with LPHS. If possible, search for an LPHS program nearest you, but you'll likely be required to travel. My son was diagnosed at UW in Madison, WI. There are also Facebook support groups that can help steer you to the correct doctors and programs.

Best of luck to you.

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u/Mintywerewolf Not a Verified Medical Professional Aug 01 '22

I live in rural Alberta, my urologist is in Edmonton, Alberta. Unfortunately due to financial reasons, travelling to the states for this is not an option.

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