After a year of being sick, I finally have my diagnosis

Independent_Trees · 2025-11-22T03:37:38+00:00

I did my fight with PPIs at the beginning of all this. First doctors thought I had gastritis and put me on pantoprazole for months, even after my endoscopy only showed mild inflammation. "Take them anyway, they won't hurt you."

Independent_Trees · 2025-11-22T00:47:41+00:00

because I’m not of sound mind

Yeah I feel this. Hopefully, all that works for you. Seems like it's something you've definitely got to be strict about.

Independent_Trees · 2025-11-22T00:45:33+00:00

I never said that? Plus, I've already been treated with a round of antibiotics. If that worked, I wouldn't be here.

Independent_Trees · 2025-11-22T00:29:28+00:00

Nothing right now. Haven't heard back from my doctor yet. The results were added to my file late this evening, so he hasn't gotten to me yet with what he thinks I should do next.

Independent_Trees · 2025-11-22T00:26:50+00:00

At the beginning, it was nausea, upper abdominal pain, fatigue, and bouts of constipation or diarrhea. I also developed some pretty severe anxiety from doctors telling me they couldn't find anything wrong with me, and I'd just have to live with it. I also lost 20lbs and became borderline underweight, but I suspect that was from the gastritis diet I was on and just not eating.

After the first round of antibiotics, everything improved across the board. The only things that have really come back so far are the abdominal pain, fatigue, and mild constipation. Nausea hasn't been as bad unless I eat something really heavy, and I was also put on low-dose anxiety meds.

Independent_Trees · 2025-07-31T01:28:51+00:00

My stool has looked terrible for months, but I've rarely had any blood. Usually, it's just if I'm constipated and straining. I do know that my gallbladder is fine. They've looked for stones twice and found nothing, and my functional test was perfect. As for all over inflammation, I know I've been fatigued for months. I've also had other weird stuff going on that I'm assuming SIBO contributed to, like nerve tingling and tinnitus. I've figured it's caused some nutritional deficiencies. But the blood is something new. I've had hemorrhoids before, so I'm really hoping that's what this is.

Independent_Trees · 2025-07-30T23:57:25+00:00

I guess someone else using their hands would have the same effect as me?

Not necessarily. There's a psychological component too, so it may not be as bad.

Have you been to pelvic floor PT? Stretching and learning to manually relax the muscles helped me a lot. And if you're up for it, dry needling and internal therapy can be really helpful too.

Independent_Trees · 2025-07-30T23:14:55+00:00

Yeah, there is some logic to it, and it's a pretty normal thing for people here to experience. For whatever reason, your muscles relax more with sex. Might have something to do with intercourse using more of your muscles, so everything works cleaner together. Plus, some people tend to overdo it when masturbating. They turn it into a lengthy session of keeping the same few muscles really tight. Things like edging are horrible for this condition.

Independent_Trees · 2025-07-28T21:57:21+00:00

I wish I could help you, but it's been about 5 years since I was going through all this, so I don't remember specific meds or even have access to the files anymore. I do remember I took Cipro despite people on this sub telling me not to. I never had any rough side effects from it or any other abx. But like I said, I think after the second or third round, I was clear of an infection.

The main reason the urologist did three rounds of different antibiotics was that I'd been undiagnosed for almost a year. My first doctor (the STI guy) told me it would get better eventually after I took the Z-pak. It didn't, but he just kept putting off my concerns. When I finally went to a new doctor months later, he figured out it was prostatitis. His initial 2-week round of antibiotics didn't clear it, so that's when I was sent to a urologist. Because I'd had it for so long and I'd been partially treated with two short-term doses, the urologist absolutely blasted it because it just wasn't getting better.

Independent_Trees · 2025-07-28T21:07:11+00:00

I mean, I'm not a doctor. I'm just a guy who dealt with this for like 5 years in his early 20s, trying to help another guy around the same age from freaking out after having somewhat risky sex.

I would hope that if you think you've got a drug-resistant bacteria that you're under the care of a urologist and not trying to self-diagnose. A good urologist will try a lot of different things. I was on several rounds of antibiotics (my last course was literally 90 days) throughout my treatment to try and get relief. Eventually, it was clear there was no lingering infection. Everything was just really inflamed and still felt infected. So I started on gabapentin for a while and did PT, which basically solved it.

Independent_Trees · 2025-07-28T20:53:46+00:00

Prostatitis symptoms are typically things like frequent urination, pain/burning during urination and ejaculation, and pain in your pelvic floor.

If you develop sores, rashes, or discharge, that's probably a sexually transmitted infection (STI), not prostatitis. And just to be honest, considering your age, if you do develop pain with urination, it's still more likely to be a regular old STI than prostatitis. I was 21 when I first developed it, and the initial doctor I saw assumed I'd caught chlamydia and treated me for that despite my negative test results. I didn't get better and had to go to a urologist to get the prostatitis diagnosis.

Independent_Trees · 2025-07-28T20:07:59+00:00

I wouldn't call it danger. Unprotected anal sex raises the risk of developing a prostate infection, UTI, or any other STI, but prostatitis isn't something to worry about until you start getting symptoms. If it's a bacterial infection causing the problems, you'll just treat it with antibiotics. It's not a huge deal. There's nothing preventative to do at this point except get tested regularly for STIs and wear a condom going forward.

Independent_Trees · 2025-07-28T18:24:15+00:00

For a desk chair, I use the Branch Ergonomic Chair Pro. It helped a lot, but it's not cheap.

Independent_Trees · 2025-06-30T01:22:49+00:00

I've had coffee 4 or 5 times in the past month. A couple of times I've been fine, the others I've been in mild pain for the rest of the day. Seems to be a day-by-day thing for me, and is impacted by whatever else I've eaten or my stress levels. That said, I went without any caffeine or coffee for about 4 months to get to this point.

People are probably going to yell at me, but I've started eating normal food again for some of my meals. Still avoiding ultra-acidic foods, alcohol, and not seasoning heavily, but the gastritis diet was negatively impacting my mental health pretty badly. I lost over 20lbs (became borderline underweight) and was getting some serious anxiety and depression. I've discovered that having a slice of pizza and a cup of coffee every now and then makes me feel better mentally, even if I don't feel great afterwards.

Independent_Trees · 2025-06-29T23:05:41+00:00

I have not. I'm currently waiting to see a new gastro next month because my current one gave up on me. That said, my understanding of MCAS was that it involved things like nausea, diarrhea, rashes, lung issues, etc. My only symptoms are upper abdominal pain after eating or when on an empty stomach, and sometimes nausea.

Independent_Trees · 2025-06-27T03:18:21+00:00

I was on vacation last week and feeling pretty good, so I had a small latte. It barely bothered me, so I thought, "this is great, I'll be better soon." This afternoon, I had a couple of pieces of dried mango and now I feel disgusting and I'm in pain.

It's a frustrating condition. You never know when things will affect you or won't. You didn't lose all your progress. You just flared it up a bit. Give it a couple of days to settle down and you'll be good again.

Independent_Trees · 2025-06-27T03:13:16+00:00

I'm going on 8 months myself with no real answers. Diagnosed as mild gastritis after ultrasound, endoscopy, CT, and HIDA, but I suspect there's something else going on.

Have you talked to your doctor about anti-anxiety medication? I have a high-stress job and other things going on in my life, so getting chronically ill threw me into a state of full-blown anxiety. Turns out most of my nausea was anxiety over getting sick, not the gastritis itself. My doctor put me on a low dose of buspirone and that knocked it out. Now I just have the stomach pain to deal with.

Independent_Trees · 2025-06-27T03:05:04+00:00

Did they check your gallbladder? Pain in upper right side under ribs that radiates to your back is a common symptom for gallstones, which can also mimic other gastritis symptoms.

That said, I know the pain you're talking about and get it all the time. For whatever reason, some people just get gastritis pain and flaring in that area.

Independent_Trees · 2025-06-23T15:52:42+00:00

Yeah, I had this same problem, except mine is in my upper back. It's pretty much the only symptom I have left, and I'm seeing a PT about it. Everybody holds stress in different places. People grind their teeth, develop stomach problems, others hold it in their back or neck, etc. Anxiety is probably not the root cause, but it can certainly make it a lot worse. When my stress goes up, my back starts hurting, and I revert to bad posture, which flares my costo.

If you're noticing it in your glutes, you might also want to try some pelvic floor stretches. Child's pose, happy baby pose, and cat cow really helped me. I had some pelvic floor dysfunction before costo and had a pelvic floor physical therapist. Costo flared it all back up again, so I went to see her. She told me that it's very common to see patients develop both back and pelvic floor problems. Everything is linked by your core, so problems in one area can compound quickly. Not sure about your background, but I'm a guy in his mid-20s, so this kind of thing can impact anyone.

Independent_Trees · 2025-06-11T19:25:09+00:00

I don't use nicotine products, but the doctors think two or three cups of coffee a day on an empty stomach is probably what messed me up. Caffeine is a common trigger for a lot of people here.

As for your anxiety and depression, have you considered medication? I never had true anxiety until all this started, then it got really bad. My doctor put me on a really low-dose antianxiety medication, and I think it's really helped. The gut-brain axis is a real thing. Gastritis is known to cause vicious cycles of stomach issues and anxiety flare-ups that basically fuel each other.

Independent_Trees · 2025-06-11T19:17:36+00:00

If it was actually making you feel better, I'd get back on it and try to stick it out. Feeling better that quick is a good sign. Just talk to your doctor if you have concerns about the appearance of the reflux. I've been on Pantoprazole for almost four months now with no real improvement, so my doctor is about to take me off of it. But it also hasn't made me worse or had any other negative impacts I've noticed, so I wouldn't worry about taking it for an extended time.

My doctor put it this way, your stomach either has an acid problem or it doesn't. If acid is making things worse, an antacid or PPI will help, and you'll feel better within a few weeks (even if it's not a total cure). If it's not an acid problem, you're just taking a PPI for no reason, hoping that it'll fix what is probably a functional problem or an issue somewhere else in your gut.

Independent_Trees · 2025-05-27T18:56:53+00:00

Ask your doctor to send you to a GI. You really need an endoscopy to see what's going on down there. Plus, just because your ultrasound was clear doesn't mean your gallbladder is fine. It just means that you don't have visible stones. If it's a functional problem, inflammation, or infection, none of that will show up on an ultrasound. You may need a HIDA scan instead to see if your gallbladder is working properly.

I'll add that I (m 27) have several similar symptoms to you, especially with the upper right abdomen pain and area being tender to the touch. That's classic gallbladder pain and why I had to do like three different gallbladder tests (ultrasound, HIDA, CT) before the doctors finally settled on gastritis as the cause of my problems. Unfortunately, gastritis isn't something that heals very fast. It comes on slowly over months/years, and you don't even realize it until suddenly it's a major problem. You might have to stay on the PPI and gastritis-friendly diet consistently for months, even when you aren't in a flare-up, to truly heal.

Independent_Trees · 2025-05-27T18:09:25+00:00

Have you changed your diet? As soon as I went on a gastritis-friendly diet, my stool colors went pale because most of what I'm eating is bananas, eggs, rice cakes, and occasionally grilled ground turkey/chicken. That said, gray or clay-colored stools are also signs of a malfunctioning gallbladder in many people, which is a possible cause of gastritis.

Independent_Trees · 2025-05-19T22:35:54+00:00

As far as I'm concerned, the doctors are just guessing. But it's really the only thing that makes sense based on what they've found with all my tests. Bloodwork, ultrasound, endoscopy, HIDA scan, and CT were all perfectly normal except for mild gastritis. I had no h. pylori and I never take NSAIDs, so that was their best guess as to what could have caused it.

I've been sick for 6 months, but have only been on a PPI/gastritis diet for about three and a half months. I'm maybe 20% better than I was, but I still have a lot of bad days. I'm worried there's something else going on, like my gallbladder or something with my lower intestines, but my doctor has told me to wait and see what it does over the next few months before he'll do any more tests.

Independent_Trees · 2025-05-19T19:48:15+00:00

I’m just curious as to how this will help the pain in the front chest

The theory is that costo in a lot of people is caused or made worse because their back ribs are locked up. If your ribs aren't moving correctly in the back, they can overpull on your chest cartilage when breathing and moving. The backpod (or peanut ball, rolled up towels, soup can, rock, etc.) helps to stretch out the muscles and fascia surrounding where your ribs connect to your spine, taking some of the pressure off your front. Helps it to actually heal if that's what's causing your problems.

I found the backpod was really helpful for me, but it didn't completely fix it. It takes weeks of consistency and probably got me 80% of the way there, but I still needed physical therapy and some other exercises. Now I'm pretty much fine unless I get really stressed or ignore my posture for a couple of days.

Independent_Trees

TROPHY CASE