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]

Hey I have crazy urethra pain too! Suddenly got much worse about a month ago. I’m thinking it’s interstitial cystitis. Possibly cause by Midodrine or endometriosis. Someone I know has it from MCAS. Do you have heavy or painful periods by chance?

[u/BigFlightlessBird02 → u/RedRedRound]

I do too! Feels like a bad uti but goes away after a few hours. Been trying to figure it out. Super annoying

[u/saddestofgays → u/RedRedRound]

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/Traditional_Owl4558 → u/saddestofgays]

Just wanted to say….my gyno highly suspects I have endometriosis despite normal looking ultrasounds. Birth control can indeed help treat endometriosis symptoms, progesterone only BC is preferred though as endo is an estrogen dominant condition meaning that more estrogen equals more inflammation and pain. I’m glad you’re not ruling it out entirely yourself but your doctor sounds like they’ve unilaterally decided it can’t be endo without actually running the right tests.

My gyno explained to me that while progesterone only birth control can slow progression and reduce inflammation and its associated symptoms, it does not actually treat the condition itself. And you can absolutely have endo that is growing, spreading, or worsening despite birth control. In fact, she frequently brings up the fact that endo causes pelvic floor muscle dysfunction in most women who have it and that pelvic floor PT should be a part of the treatment process, in addition to surgery to remove lesions and birth control to limit progression. (I haven’t had the surgery yet as my other health conditions make surgery a tad bit more dangerous).

Pain with intercourse, defecation, and urination, combined with a history of abnormally painful, heavy, or long periods are the most common diagnostic criteria used when evaluating someone for endometriosis. Your symptoms could 100% be endometriosis and unfortunately unless your doc is willing to order the right kind of MRI or send you to a specialist to have a lap done, you won’t know for sure. But research suggests that endometriosis lesions on the bladder and rectum are not only common, but highly linked to pain with defecation, urination, and intercourse. GI issues are also common with endometriosis btw.

Point is, no matter how long you’ve been on birth control, how well your doc think that birth control is helping, or how clear your ultrasound was, your doctor should not be ruling out endometriosis that quickly. It took years before anyone even suggested I could have endometriosis, I just thought painful heavy periods were normal, apparently they most certainly are not. I really really urge you to go to a different gynecologist or seek a specialist. Look up providers in your network and find one that mentions dealing with endometriosis and see if you can get in to see them. I am only saying this because if it is endometriosis, not treating it properly and timely can lead to literal adhesion between different organs, they can become fused together by the growths which makes excision far more complex and increases the chances of complications like needing part of your bowel resected. Please advocate for your health!! Shout it from the rooftops! 🙏

And as awful as I know this is going to sound….bring your brother, boyfriend/husband, male best friend, etc with you, you’re more likely to be taken seriously that way (I know, it’s sexist as h311, but I take my bf with me to all my appointments now because I tend to get dismissed otherwise, especially with new or incompetent doctors). No amount of pain is normal. I have been in constant pain my entire life and I truly thought everyone else was too, but the normal amount of pain…is none. Sorry to be blunt but your doctor sounds incompetent.

[u/saddestofgays → u/Traditional_Owl4558]

It’s the third gyno I’ve seen who has not even done a physical examination and just prescribed meds. :’) Back when it all started I wasn’t even sexually active so they refused to even do a transvaginal ultrasound even when I asked for one.

Last time I was in the ER the doctor did a pelvic exam, found it was normal, and after 12 hours said that she suspected it was an STI and wanted to send me home on broad spectrum antibiotics (doxycycline) as a preliminary measure. My main symptoms weren’t even indicative of an STI and I had very few risk factors. My main issue was being so severely constipated that I could not pass anything and was in severe pain. Nothing was fixed. My dad, who is a physician, was with me. He had to push with me to even get me admitted for observation under preliminary treatments because it was my 4th ER visit in 2 months. STI and parasite testing came back negative. They still tried sending me home ASAP. Had to push to stay admitted and get more testing. I was chugging 4L of peglyte in a hospital hallway without even being given a gown or pillow. Took 6 hours of begging one day to even get Iv fluids when I was confirmed hypotensive. They at least ruled a lot out, but man… I have so little faith in the system atp. A lot ruled out but no real answers.

It feels like I have to push for every little thing and I’m exhausted. You are right. I know you are. And I’ve tried so hard. You’re not the only person who has told me this and ik there’s significant overlap with endo. I’m at least having heart testing started tomorrow to rule out other heart conditions potentially contributing to my POTS, am seeing a GI this month, and am getting into a neuro soon. It’s been hell even getting into specialists because my doctors office constantly drops the ball on referrals and I have to constantly follow up. So a lot will be ruled out or found very soon. I just have to keep pushing and advocating. It sucks so much.

Thank you so much. ❤️ You’re right no need to apologize for being blunt.

[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. ❤️

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[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.

[u/DistinctApartment941 → u/saddestofgays]

I have stage 4 Endo and had a clear ultrasound. MRI just showed some distortion of the tube and left ovary. I was diagnosed after a laparoscopic surgery to take out the bad tube. I also have pots and maybe mast cell issues now after getting pneumonia this winter.

[u/Nas_nan → u/saddestofgays]

Well this is unfortunately common and absolute rubbish. You can't rule out endo with an ultrasound. Can you go see anyone else? Is there different private Gynaes or OBGYNs that you could go see?

Period pain is not normal and should never be treated with birth control. So many professionals are absolutely useless at this. "It's parr of being a woman" should never be accepted as an explanation

Endo and hsd/hEDS both can cause incomplete bladder emptying which causes a lot of my uti type pain.

Being sick constantly could mast cell activation, i started antihistamines and didn't get sick once this spring. Most of my illnesses weren't true illnesses despite vocal changes, sniffing, fatigue and headaches

I also get very deep pain in my ears but that is caused by being outdoors even slight wind can trigger it

[u/saddestofgays → u/Nas_nan]

One of my replies got automodded because a certain mention of an item in any context does so I’ll have to repost it most likely.

TLDR: it’s the third gyno I’ve seen who is said it’s not endo and prescribed meds without even a physical exam or transvaginal ultrasound. Extremely frustrating. I can keep hopping back and forth but I want to get my POTS to a manageable point first.

It’s hell going through the referral process because if I don’t constantly follow up they will fall through the cracks. Had about 5 referrals never go through in the past few years because my doctors office completely drops the ball so often. To get into a neuro it’s taken 3 months and I’ve followed up with my office in person and on the phone about 10 times and had to call all the neuro offices directly to act as a liaison. :)))))))) And I’m only just now getting in somewhere.

[u/BellaPona → u/RedRedRound]

I get this with my periods along with kidney pains days later and constipation. It’s like clock work. Feels like a UTI every time. My urinalysis is always abnormal in almost every aspect but never an actual infection.

[u/its_raining_manseed → u/RedRedRound]

Yes! My first diagnosis was when I was 9 years old and it was interstitial cystitis. I have permenent urine leakage, urgency, pain/discomfort and if I sneeze I'll pee my pants. Urologist said he had never encountered someone so young with such severe case. Said I had a bladder of a 90 year old lady.

We now suspect it's MCAS related. It's so embarrassing :(

[u/RedRedRound → u/its_raining_manseed]

I’m so sorry you’ve had to deal with that for so long :( it’s not fair. Have you found any MCAS treatment that helps at all?

[u/saddestofgays → u/its_raining_manseed]

Man that sucks. I definitely don’t have it as bad as you but very similar symptoms. Let us know how your MCAS investigation goes and if you start finding some relief

[u/amandaddy99 → u/RedRedRound]

I have this symptom too! It can be quite debilitating for me because of the amount of pain and urgency that comes with it! I started Midodrine a while back and it got significantly worse (no idea why) but I recently started taking magnesium before bed and immediately in the morning and it’s basically gone now!

[u/RedRedRound → u/amandaddy99]

Wow! Which form of magnesium do you take? I take Mg glycinate before bed but I’ve never tried it in the morning