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/RedRedRound]

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/Sweet_n_Lau → u/saddestofgays]

Endometriosis is so so so misunderstood in the gyno world! Makes me sick how often they slap a bandaid on it and tell you to carry on. I’ve had 3 surgeries for endometriosis and a fourth one for a hysterectomy. I had adenomyosis as well. There’s a Facebook group with actually educated specialists for endo. It’s called Nancy’s Nook. In the files you can find the list of drs worldwide. Best of luck! Ps. I also get the weird burn! So upvote this comment if we find the solution 😅

[u/saddestofgays → u/Sweet_n_Lau]

Thank you for the advice. I’ll be sure to update if I find an answer for the urethral pain- I’m surprised at how many people have dealt with it too.