Disappearing in plain sight

mistyhound2 said:No doctor is going to prescribe you antibiotics for an entire year... you clearly have other issues.

I have to ask, what part of the country are you living in? 😂

Take me, for example; I was on a constant cycle of antibiotics for nearly two years, and now I'm dealing with the health fallout. And I'm certainly not the only one...

It seems some people find nothing better to do than leave bitter, useless comments.

Once again, I suggest the OP head to the ER...

Hi ladies,
Please excuse any typos—I’m absolutely exhausted, and my head is pounding along with my entire body.
Today was my first day back at work... yay. I made it through, but man, it was draining. I just walked through the door, and I wanted to quickly say thank you all and wish you a wonderful night!🙂😘

HANG IN THERE, GIRL!!!

A close friend of mine was put on a constant cycle of antibiotics for bladder infections for five straight years. Honestly, her brilliant primary care physician never once thought to refer her to a specialist during that entire half-decade. I’ve known her for about a year now, and when she first told me about her situation, I immediately told her she needed to demand a referral to a urologist. The outcome? After undergoing a cystoscopy, it turns out her bladder looks like it belongs to someone sixty years older; the inflammation is chronic and essentially incurable, and now she’s moving into testing for bladder cancer. To make matters worse, her urologist keeps keeping her on various antibiotics, cycling through everything from nothing to heavy-duty stuff like Ciprofloxacin.

mistygull21 said:but her first test came back normal, while the second one (just a day later) didn't.

It’s possible she just got confused. Another possibility is that the results were misread. For instance, there was a major scandal over in the UK where they had issues because the tests were being interpreted by staff who weren't sufficiently qualified. This led to women receiving false negatives, which meant cancer went undetected until it was too late. They ended up having to audit thousands upon thousands of previous results, calling all those women back to tell them—no, you aren't actually fine.

fadedmason said:I dealt with a brutal case of the flu myself: I had a constant 104 fever for ten days straight, and once that broke, my throat started hurting and I think my lungs were affected too (it took another 21 days to recover). My primary care doctor actually just sent me home—she honestly thought I wasn't going to make it through...

So what kept you at home? Good grief, lady, you could have gone to the ER.

Look, all these theories are fine and dandy, but honestly? Don't believe a single word until you go in for some deep-dive testing. If you're dropping weight like crazy, the list of potential culprits is massive. It could be the thyroid—like a few people already mentioned—but it could also be something like Hodgkin's disease, which I’m actually dealing with right now. One of the big red flags there is rapid weight loss and swollen lymph nodes... and for some reason, doctors have a hell of a time pinning down the actual diagnosis. They totally led me on a wild goose chase for three years—all because my only symptom was this weird itching on my arms and legs. I just dealt with it until these nasty lumps popped up under my armpit. And then the doctor had the nerve to tell me it was just fatty tissue. It wasn't until about a year and a half later that things started hurting—turns out the lymph nodes had filled up the armpit area so much they were actually pressing on my nerves.
At the end of the day, we all have our own stories, good or bad, but seriously—get those detailed tests done. And believe me, maybe it's just my own paranoia talking, but whenever this happens to someone, I’m the first one telling them to go get a biopsy immediately... especially when I see how many people around me are fighting the exact same thing.

fadedmason, good grief, what kind of ovaries are we talking about being in the GROIN area😂? I mean, basic anatomy and stuff here😁. All you've got in the groin is lymph nodes—you know, glands. Seriously, where on earth do you live?

electricpanther82 said:fadedmason, for heaven's sake—what kind of ovaries are located in the GROIN😂???? I'm talking basic anatomy here😁 In the groin area, you only have lymph nodes—essentially glands. Seriously, where on earth do you live?

I am certainly not unintelligent, but please accept my apology—it seems I wasn't clear enough, as most of you interpreted my comment as me actually believing ovaries are in the groin. That isn't the case; rather, I had swollen lymph nodes in the groin area, and the lumps that appeared were related to my ovaries... so please, I ask for your understanding because I truly don't feel well right now...

Glad I could brighten your day 🤷😍

fadedmason said:Look, I'm not actually an idiot, but my bad—I clearly didn't explain myself well. Most of you caught what I meant about the ovaries being in the groin area... but I actually meant my lymph nodes were swollen in the groin, and those lumps I was talking about were related to the ovaries... so please, just give me a break, I really don't feel great right now...

Glad I could make your day a little brighter 🤷😍

Those lumps you're feeling could totally be swollen lymph nodes in your abdomen. Seriously though, stop looking for medical advice on a forum and go get a DETAILED MRI

stormyowl2 said:Those lumps you're feeling could very well be enlarged lymph nodes in your abdomen. Seriously—stop taking medical advice from internet forums and go get some thorough, comprehensive testing done at a clinic.

Thanks, stormyowl2, and thanks to everyone else for the help, the empathy, and for sharing what you've been through...
I’m currently mid-treatment, and once I finish this round, I’m heading to an infectious disease specialist. I need them to run detailed cervical and urethral swabs to check for mycoplasma, chlamydia, TV, C. albicans, and standard bacterial cultures...
Hopefully, that finally gets things moving in the right direction. 🙂

I feel like I owe you all an explanation regarding that Pap smear... just to clear things up: In my state of total confusion—basically spinning in circles at the time—one doctor actually suggested I stop bothering with local OB-GYNs and just head to a private specialist in Chicago instead. So, that’s exactly what I did. Here was the situation: back home, getting an appointment with a gynecologist usually involves a months-long waiting list, so I went ahead with a local exam first. But because I managed to snag a private appointment in Chicago just one day later,
everything played out like this: the local Pap came back fine, but the Chicago Pap showed issues.
Now I'm left wondering—how is that even possible?
P.S. I actually begged my regular doctor to perform an ultrasound, but she just kept brushing me off, insisting it wasn't necessary since everything felt "normal" during the manual exam. To her, if the ovaries felt the right shape, we were good to go—which, honestly, made zero sense to me, but I felt too helpless to argue at the time. I ended up staying quiet about seeking a second opinion privately, only for that specialist to discover I have PCOS, CIN 1, and other concerns.
In Chicago, I opted for the full battery of tests rather than just the basics.
I wasn't trying to play games; I was just testing the system, though my primary goal was simply looking out for my own health...

mistyhound2 said:No doctor is going to keep prescribing you antibiotics for an entire year... you clearly have other issues at play here.

Why wouldn't they? I was taking them because of a persistent bacterial infection in my urine—it was a nightmare. My routine was basically finish a course, take a little break, get tested again, and repeat that cycle for a solid year until I finally cleared it. But honestly? It wasn't even the pills that did the trick—I ended up getting better through natural means.

I believe this has already been mentioned somewhere else... but I suppose it wouldn't be a bad idea to go ahead and get tested for HIV... after all, there are certain issues surfacing that seem to point toward a significantly weakened immune system...

fadedmason said:Look, I feel like I owe you guys an explanation regarding that Pap smear... just to clear things up: In my total state of panic and just spinning my wheels, one doctor told me I might as well cross all the local OB-GYNs off my list and just drive to NYC to see someone privately—so that's what I did. Here’s the deal: back home, you have to wait months just to get an appointment with a gynecologist, so I went ahead and got checked out locally first. But then, by some stroke of luck, I managed to snag a private appointment in NYC just a day later.
So basically, the Pap here came back fine, but the one in NYC said it was bad.
And I'm sitting here wondering... how is that even possible?
P.S. I actually begged my local doctor to do an ultrasound, but she kept brushing me off saying it wasn't necessary because everything felt "normal" during the manual exam and there was no need (I mean, that made zero sense to me, but I just felt so helpless at the time)... so I stayed quiet about going to a specialist, only to have the private doctor find out I have PCOS, CIN 1, and all that.
When I was in NYC, I made sure to get the full battery of tests done.
Honestly, I just wanted to test the system—but mostly, I just wanted to help myself...

Anyway, whatever happens, demand a full abdominal ultrasound—don't let them just check the uterus and ovaries. Whether your ovaries are polycystic or not, they shouldn't be causing you constant pain 24/7.

stormyowl2 said:They kept me in the dark for three years when I only had one symptom—just some itching on my arms and legs.

Could you please elaborate on this?
I've had swollen lymph nodes in my neck for years, and lately, there's this spot on my lower back that's driving me crazy with the itching...

btw, I had the lymph nodes biopsied and they came up clear... honestly, I've just lost the motivation to keep chasing doctors at this point.

Sophia Williams10 said:can you please write a bit more about this
basically, I've had some swollen lymph nodes in my neck for years, and lately, there's this one spot on my lower back that's itching like crazy

btw, I had the lymph nodes biopsied and they didn't show anything... so in the meantime, I just kind of lost the motivation to keep running back to the doctor

So, for me, this whole mess started back around 2003—it kicked off with this unbearable itching on my shins and my forearms above the wrist. It was so intense you literally couldn't stand it without scratching... and then, about a year and a half later, I noticed a lump under my armpit. I went to see my OBGYN because I was terrified it was something with my breasts. He checked them out and told me everything looked fine—just fatty tissue, most likely—and said not to mess with it unless it bothered me. The saddest part? He used an ultrasound and didn't see a thing. So, I just carried that lump around for another year and a half until it actually started hurting. I ended up going to a surgeon on my own, basically demanding they just cut the "fatty tissue" out. Well, once they actually opened me up, they saw it wasn't fat at all—it was five lymph nodes the size of chicken eggs. When I asked how anyone missed that earlier, the doc just said the axilla area is pretty spacious and it had tucked itself away perfectly. And seriously, if I put my arm down, you can't feel a thing; but the second I lift my arm, that lump pops right out. I finally had the surgery in March 2006. That itching had been hanging around the entire time, too... but after chemo, it finally stopped. With my illness, the symptoms are fever, night sweats, weight loss, and itching. They usually hit separately, though. Like, either I'm losing weight, or I'm itching, or I'm sweating... it's rarely all at once.

stormyowl2 said:I had my surgery back in March 2006.

Thanks for getting back to me. 🙂
Are you in the clear now?
Did you notice any skin changes or anything else besides the itching?
I've been super thin for years no matter how much I eat, and aside from those lymph nodes and this recent itching, I'm actually pretty healthy with a great immune system... which just makes this whole thing more confusing...

fadedmason, I don't mean to freak you out, but if I were in your shoes, I’d definitely get the CA-125 markers checked. It’s just about being certain that nothing nasty is brewing in the ovaries, especially since you're already dealing with PCOS.

Sophia Williams10 said:thanks for getting back to me 🙂
are you officially in the clear?
was there actually anything visible on your skin where it was itching—like, any actual changes?
honestly, I've been super thin for years no matter how much I eat, but aside from those swollen lymph nodes and this recent itching, my health is actually great and my immune system is solid... which just makes this whole thing even more confusing....

I can't tell you if I'm totally cured or not. My doctor says I won't be considered "cleared" until I hit the 10-year mark without a relapse. So yeah, I'm stuck doing regular checkups every four months. Even though it's technically malignant, this disease has such a high "positive" rate that it's actually treated as something curable.
As for the skin stuff—yeah, I definitely had changes. It looked woody and incredibly dry... and whenever I tried to soothe it with some lotion, those spots would just turn bright red. Kind of like psoriasis.
The crazy part is that I felt totally fine the entire time, even up to this very moment—no issues at all, honestly feeling like a powerhouse. You might not deal with any of that, especially since your lymph node biopsy didn't show anything suspicious.
Besides the symptoms I mentioned before, my blood work was also a giveaway—elevated sedimentation levels, white blood cell counts, and high platelets.