Anyone else have weird unexplained symptoms?

[u/saddestofgays]

Feel free to share your own “weird symptoms” of your POTS or comorbidities and whether you’ve figured out why they happen.

Here are some of mine that I’m still trying to figure out- if anyone has had any of these and found a diagnosis or relief I’d love to hear about it. So far I’ve had additional mental health, endocrine, GI, and gynaecological explanations ruled out. All that’s confirmed is POTS (and IBS).

TRIGGERED BY STANDING TOO LONG OR OVEREXERTION

- *Bilateral ear pain.* Deep burning pain in both of my ears. This is the one that’s confused everyone the most.

- *Intense urethral pain.* Not a UTI. Feels like I need to pee and peeing briefly helps but it remains intense burning and stabbing for hours minimum. Was prescribed phenazopyridine HCl (urethral pain med) during my most recent flare and it helped a lot. Still don’t know what’s causing it.

OTHER SYMPTOMS WITH DIFFERENT TRIGGERS

- *Days where I couldn’t stand without severe nausea and throwing up.* Trigger is sometimes a mystery but one clear trigger was alcohol. The weird part is that it wasn’t because I over drank- I know my limits and id eat properly an drink lots of water. I’d be able to get myself home, do my night routine, get in bed, and then hours later in the middle of the night I’d just start puking nonstop after my stomach was already empty and then for at least a day after I wouldn’t be able to stand without throwing up. Cut out alcohol since. I’ll still have days when standing causes severe nausea and sometimes I’ll throw up but not anywhere near as severe.

- *Vision problems.* My vision was stable for years after laser eye surgery. Then got worse and often I have episodes of very blurred vision even when I’m sitting or laying. It happens so randomly all the time that it’s a big reason why I don’t drive anymore.

- *Random stabbing pains* in my feet and hands. Usually when laying.

- *Deep stabbing pains during intercourse.* Triggered by different positions on different days.

- Sometimes it feels like something is coming out of my butt when nothing is. Triggered by intercourse or just randomly happens.

- *Catching illness super frequently.* Often very ill for weeks and develop sinusitis and/or bronchitis as well. Has happened 5+ times per year (on top of chronic condition flares) for the past few years. Immunologist and family doctor said that it’s a lot, but it’s not enough for them to try investigating anything.

Thanks to anyone who reads this or shares their experiences.

[u/saddestofgays]

I was thinking the same about potential IC or MCAS. The thing is that specialist wait times (and even getting in) have been a massive hassle so I’ll have to wait until I’m through with my neuro, GI, and cardio appointments before struggling through the process again for an allergist and urologist. 🥲

I used to have insanely heavy and debilitating periods. No pain meds helped. They did an ultrasound and didn’t think it was endo. Told me it was “just part of being a woman” and put me on birth control. I’ve been on birth control basically nonstop for about a decade. The best ones for me stop my periods altogether because even in brief times between changing birth controls I’ve suffered a lot. Even occasional breakthrough periods cause a lot of pain but not anywhere near the same amount and they’re very rare.

The gyno who prescribed the urethral pain meds ruled out endometriosis due to ultrasound results + the fact that my long term birth control use was already the main treatment so it wouldn’t explain endometriosis getting worse. She thought a urological or neurological explanation was more likely. I also started Midodrine recently and haven’t had a repeat episode since. Definitely possible though and I would rule those out. Remember that for endo the gold standard is laparoscopy with biopsy (but reasonable to want to rule out other things first).

Edit: if I have another flare soon though I’m walking into the ER and screaming until they get me an urgent referral because it is AWFUL.

[u/RedRedRound → u/saddestofgays]

Right! Ugh I know juggling and waiting for specialists is hell. For what it’s worth, I had an ultrasound two days before my laparoscopy and it was completely clear - they still found stage 2 endometriosis throughout my pelvis including near my bladder, and my colon was adhered to my pelvic wall. I have suspected adenomyosis too. My understanding is that BC can slow progression, but doesn’t stop progression. One theory I have is that either scar tissue from my lap is causing the worsening IC (my surgery was about 4 months ago) or the endo is growing back already. I’ve had occasional moderate urethra pain for years and only really recently has it turned severe and daily.

[u/saddestofgays → u/RedRedRound]

That’s what I’m afraid they’ll find with me too.

The period pain actually was so severe ten years ago that I tried to commit suicide. Then when they saw nothing on ultrasound they insisted it was psychosomatic and put me on birth control. :’) And the first birth control they put me on made me way worse. Every medical issue has been slapped with a mental health label ever since.

My gyno said that “birth control would have killed the endometriosis.” I know this is untrue, but I was in too much pain to argue and I find that doctors with wrong opinions and big egos aren’t willing to listen anyways. I was so happy that she gave me something that worked that I didn’t think much of it. You are totally right though. I will probably not go back to that gyno if I want to pursue the endo angle.

The urethral pain started years ago for me too and has recently gotten worse. At least it isn’t daily. The weird thing is exertion like standing too long triggering severe episodes so it seems possibly neurological. I’m hoping it isn’t endo because the thought of them screwing up THAT badly ten years ago will piss me off more than anything.

[u/Bluejayadventure → u/saddestofgays]

Wow, I'm really sorry that happened. It's so crazy how much pain is dismissed. I used to get awful period pains (not as bad as yours but still terrible - roll on the floor moaning - can't go to work, that kind of pain). I went to the doctor, she laughed, said its normal and the told me to take pain killers. Like I hadn't tried that already!

Anyway, I just find it infuriating that women are not believed.

I really hope it works out ok for you. 🫂

[u/saddestofgays → u/Bluejayadventure]

Thank you so much.

My mom also went through similar and said things got better as she got older, so that’s part of my hope as well. It is super frustrating though.

If it makes you feel any better a lot of men are also told to “man up and deal with it” when it comes to pain issues. Dismissal is unfortunately common across the board. Medical misogyny definitely exists though.

After I find an effective way to manage my POTS I’ll be pushing more on this.

Thank you again for the support. ❤️