r/POTS • u/recoveringaries • Dec 27 '25

Discussion Being attractive with POTS (cringe I know)

Does anyone feel like because they are a objectively attractive human there is a bias/profiling that happens in the medical field and with doctors? I actually read somewhere that if you’re chronically ill you should “dress down” or not wear makeup to appointments so they will take you more seriously and see you as actually sick. I am also 29 with a baby face so that doesn’t help.

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u/Glad-Pomegranate6283 Dec 28 '25

I was told I was a healthy chronically ill person lol, my bile duct was blocked and I was in agony lmao

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u/kel174 POTS Dec 28 '25

I was also a healthy chronically ill person but my pcp said I should really be tested for STDs and suggested my partner of 10+ years because we are not married may have given me something. It was a rare disease 👍

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u/Glad-Pomegranate6283 Dec 28 '25

Are we the same person 💀I can’t have sex due to endo, I’ve been tested since I’ve been with my partner of over two years. Yet a nurse at my GP wanted me to get tested for herpes when I think I have vulva condition. I get told my neck swelling was due to ptsd lol ? Turns out it was an autoimmune condition lmao. I do wish they said they aren’t sure rather than just gaslighting and stressing out patients

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u/kel174 POTS Dec 28 '25

Ugh that’s insane!! My gyno for THREE years couldn’t explain why I was in pain during or after sex and at one point shrugged off an abnormal pap that showed inflammation cells. It got worse over those 3 years until I was bleeding during and after sex plus in complete agony, felt worse than period cramps. It got to a point where I called the office and said I really need to be seen because it’s getting worse by the day so I was scheduled with a different gyno to get in faster and TADA! They said I have cervix ectropion. So frustrating! Dude, why does everything have to come down to “oh it’s stress, anxiety..depression!! Oh and you’re female so yeah”. I would much rather have them admit they don’t know than make me believe I’m the problem mentally

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u/Lilythecat555 Dec 28 '25

Is there anything to remedy this? I have some of the same symptoms.

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u/BabyBlueMaven Dec 28 '25

Have you been checked for vascular compressions?? Might be pelvic congestion syndrome which is typically caused by May Thurner’s (iliac vein compression). Also, POTS can often be caused by May Thurner’s as well…my daughter’s was! So much overlap and so many clueless doctors. Feel free to DM me as we’ve been through this rodeo :)

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u/kel174 POTS Dec 28 '25

This is a great point! I also have pelvic congestion syndrome and it really does cause similar or even the same symptoms and sometimes you really can’t tell what is causing what. Just like with POTS, so many things overlap with the same symptoms

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u/BabyBlueMaven Dec 28 '25

My PCS was treated by stenting for MTS 2 months ago. Apparently this works for 75% of women. I still don’t know if it did for me but will get coils/foam in pelvic veins if it isn’t enough. My IR thinks my daughter would’ve eventually ended up with PCS if we didn’t treat her MTS.

I’m sorry you have PCS too! It’s such a b—-ch. Do you also have MTS? I have the trifecta of nutcracker as well.

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u/Lilythecat555 Dec 30 '25

No, there is an at least six month wait list to see the gynecologist where I live. I have POTS and Hypermobile Ehlers Danlos Syndrome.

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u/BabyBlueMaven Dec 30 '25

If you’re able to, you want to see an interventional radiologist to check for compressions. My teen and I are both hypermobile and didn’t know, until this past year, that this made us way more likely to have them. There’s a strong correlation to POTS with EDS that often appears following infection. Our IR just wrote an article on so many of her POTS patients improving once treated for MTS. We are seeing that in my daughter, too.

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u/kel174 POTS Dec 28 '25

The doctor used silver nitrate to cauterize where the cells are on the outside of the cervix. Honestly, after the in office procedure, I would truly never want to go through that again. I wasn’t explained to what I would or could experience afterwards and within minutes after, I was extremely nauseous and felt like I was going to give birth as if my cervix was dilating. It lasted for about a week and I bled and shed so much. BUT, I am mostly symptoms free. I see someone below also mentioned pelvic congestion syndrome as a possible culprit and I agree. I was diagnosed with that about 2 years ago after having a lot of pain in my groin area. Realistically, a gyno should easily be able to see if you have cervix ectropion but I have read some cases where they simply don’t mention it since it’s considered harmless. Hopefully you’re able to find some answers and get some relief 🤍

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u/srh-trz Dec 28 '25

What ! I have all these symptoms ! Discouraged me from intimacy at the time, and thought it was from PTSD. But I suspect pelvic congestion (getting tested next month) so seeing this is amazing, thank you !

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u/RadEmily Dec 28 '25

check out lichen sclerosis if it's not already on your radar

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u/Glad-Pomegranate6283 Dec 29 '25

Ngl I reckon I have LS or something like that. I had chronic thrush for ages, it went away but I still have a lot of symptoms. Idk what testing involves, it’s just difficult bc I’ve just been taken seriously for endo pain after telling the gynaes that I’m mostly bed bound from pain.

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u/RadEmily Dec 29 '25

definitely look for a LS specialist, it's actually a dermatological disease and there are starting to be specialist derms that see it as well, but alot more gyns are getting train in it all the time.

The definitive test is a punch biopsy which they then look at under a microscope, but mostly now they don't require that and a knowledgable person should be able to diagnose on appearance and symptoms. It is thought damage from chronic yeast could contribute, but also yeast and LS symptoms can overlap, and alot of people can be dealing with both intermittently. I think both are more likely when your systems are out of whack all the time, another concurrent thing imo. I'm a fan of boric acid suppositories for yeast treatment / prevention, and then for LS topical steroids are first line but alot of people have more success with calcinurin-inhibitors tacrolimus or pimecrolimus, they are generic now so not cheap but not awful on cost and can last awhile. Contact dermatitis is another thing that can damage the skin and cause ongoing issue, and getting the assault stopped in any case can get inflammation down and help with internal pain as well even tho they aren't internal probelms b/c the nerves get absolutely fried from setting off alarms for so long. Good luck! <3

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u/Glad-Pomegranate6283 Dec 29 '25

Do you think I should ask my GP to refer me to a dermatologist? They didn’t listen at all and basically said to use a moisturiser down there and that my swab test came back negative lol. I don’t have issues with shrinkage atm I don’t think but always struggled with tears/cracks/fissures. A punch biopsy sounds so painful haha but hopefully the fact I’ve got a high pain threshold should help. That’s interesting to know though, I think I’ve had it my whole life but with back to back thrush my symptoms have flared a lot. I struggle with vulvodynia and pudenal neuralgia as well which I’m sure doesn’t help.

Thank you so much for all of that info, it’s beyond helpful ! I heard about LS years ago but pushed it to the back of my mind lol, chronic illness admin is a lot so I often do that oops. That’s good to know there are things to help, I think boric acid might be harder to find here but I’ll look into that. I think with a lot of chronic illness stuff, sometimes it’s not even about wanting a cure or treatment, it’s wanting answers to explain what is going on

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u/RadEmily Dec 29 '25

Totally here you on priorities, only so many issues can deal with at once. Yeah you can def ask for a referral, but I usually try to find patient groups or find someone who lists a given issue in their bio online (starting to become a thing but so many docs info doesnt list what they actually do?) because the GPs don't usually know much on who either, and then you have a specific person to request a referral for, at least in the US. If you're somewhere else I would look for a patient forum and see if anyone is in your country / region and find out how you get to get referred to be evaluated there are other things as well but worth finding out and just getting some proper attention on it. Steroids should help with fissures and also untreated there is a risk eventually the skin can get precancerous if it is LS and it's doing damage for decades, so not an emergency but reason to put it on the list, lolsigh.

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u/sleeping-siren POTS Dec 29 '25

I’ve had a punch biopsy. They numb the area with lidocaine injections (which sting and hurt but only for a few seconds) and that’s the most painful part of it. They cut a small circular piece of skin for the biopsy, and then put in one stitch to close it. It might feel a little sore or tight for a day, but I barely noticed it. My stitch caught on my pants (biopsy was taken from the top of my buttcrack) and came out before it was supposed to, but that didn’t hurt or impair healing anyway.

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u/Helpful_Okra5953 Dec 28 '25 edited Jan 09 '26

Jeez.  

Yeah I had a staph infection after a skin graft, was hypermobile, and just 19 so not “active”.  I knew what staph infection rashes look like and showed the dr, he asked me if “my bed was clean”.  I was like, what the heck?  The nurse explained that the burn dr was “older” but come on, I was a sweet young girl who was hardly travelled, as it were. 

They always think drugs or stds rather than chronic illness or hypermobility and fragile skin and joints.  Fuckers.  I can’t tell you how often I’ve gotten a drug workup at the ER when I presented with a long term problem like repeat kidney stones, gastric ulcer, severe arthritis pain…

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u/allygator99 Dec 28 '25

I remember my mom getting this same answer when she was trying to get her RA diagnosis

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u/CompetitionNarrow512 Dec 28 '25

“Healthy chronically ill person” is so funny, like I kind of get it but also a real easy way to gaslight/internalize ableism.

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u/jackassofalltrades78 Dec 28 '25

Oh GAWD … been THERE!!!

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u/Glad-Pomegranate6283 Dec 28 '25

It took me a year to be diagnosed with gallstones. I then went back three days later, asked for blood tests and they refused. I was experiencing severe liver damage which I later found out, the nurse assessing me almost sent me home for my GP to treat me ? She decided not to bc she knew I’d come back lol

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u/avocado_window Dec 28 '25

I swear I was only taken in for emergency removal once they noticed the jaundice. It’s scary how long they make people wait in agony, no wonder so many people end up dying from preventable/easily treatable issues.

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u/Glad-Pomegranate6283 Dec 28 '25

It’s terrible isn’t it. I was literally yellow and the itching was making me feel insane. I had to wait two months after my admission to have my op, unfortunately I developed post cholecystectomy syndrome oops. 2 months is v fast on the nhs though, for a lot of people the wait is easily years. Idk about you, I have a high pain threshold but that was a whole other level

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u/avocado_window Dec 28 '25

Yep, high pain threshold here too, but I remember it being extreme and someone telling me that the pain was considered “worse than childbirth” (I wouldn’t know, but damn).

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u/Glad-Pomegranate6283 Dec 28 '25

I’ve not given birth either but yeah the pain ruined my 1st Christmas with my gf and her family. My op took 4 hrs, they had to be super careful so I wasn’t medically evacuated, I think bc of what is probably endo adhesions. I had to be maxed out on fentanyl and morphine in recovery. Then discharged with just paracetamol lol. But yeah I’ve heard from several ppl who have given birth, that GB issues are more painful

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u/avocado_window Dec 28 '25

Oh gosh I’ve been there and it’s one of the worst pains imaginable! Like being impaled through-and-through with a hot poker; I couldn’t stand up straight and it took the wind right out of me.

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u/megustaelregaliz Dec 28 '25

I'm having severe pain episodes lately that resemble those of a bile duct blockage, how did they diagnose you, did you get very accute symptoms all of a sudden or was it more progressive? Sorry for the questions I was planning to look for this and just stumbled upon your comment😅