Wait a year for geneticist or find new cardiologist now?

Hey guys, needing some advice.

I’m 28, 5’4, 155lbs, transmasc, and diagnosed with endometriosis, Unspecified Ehlers-Danlos Syndrome, and orthostatic hypotension. I haven’t medically transitioned yet due to multiple chronic health conditions.

Last year, my echocardiogram showed mild aortic sclerosis and moderate mitral valve sclerosis, and I've had a big uptick in chest pain and shortness of breath this year. My previous cardiologist dismissed it as anxiety and I never went back.

I recently had commercial genetic sequencing done that showed a cvEDS variant of uncertain significance. My geneticist appointment is a year away. Is it worth finding a new cardiologist to evaluate my worsening heart symptoms now, or should I just wait for genetics?

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u/Distinguished_Degu — 14 days ago
▲ 1 r/Endo

New, worsening symptoms. Please help.

I’m diagnosed with endometriosis, and for the past two years, I’ve had cyclical diaphragm pain tied to my menstrual cycle and eating, along with tremors, dizziness, shortness of breath and tachycardia. The week before my period, I get seizure-like episodes. I'm unsure if this is catamenial epilepsy or non-epileptic seizures. Some are nocturnal and I have no awareness of them. I've woken up with whiplash and bitten my tongue/cheek, once hard enough to draw blood. I've also caught some of these episodes on camera.

I'm diagnosed with orthostatic hypotension, mild aortic valve sclerosis, and moderate mitral valve thickening, but I don't think these fully explain what I'm experiencing. Neurology and cardiology dismissed me.

Over the past few months, the chest pain has become constant and worse. It feels like a strong squeezing pain in my heart/chest. Deep breaths are very painful and make me cough, so I always have to take shallow breaths. It feels like I'm constantly out of breath, like I just did a long workout. When it is most severe, I get pain in my jaw, my legs go numb and ice cold, and then the neurological symptoms start.

This is NOT anxiety. I have a history of anxiety, so I know the difference, and I can assure you this is not that. Despite everything, my EKGs come back normal — only my blood pressure is off. I recently went to the ER during a flare and they dismissed me as well.

In the last few days, I developed a new symptom: clitoral pain. It feels like a zipper is caught in it or a sharp object is growing inside it.

If anyone has experience with diaphragmatic/thoracic endo, periclitoral endo, or seizure-like episodes with endo, I'd really appreciate your insight. My symptoms are progressing quickly and I need to figure out what’s going on.

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u/Distinguished_Degu — 1 month ago

C to S

I can't bring myself to hate you, so I'll love you from afar.

Close enough to catch you, far enough to let you go.

May my wings be your shelter when the walls cave in.

Sincerely,

– Your Guardian Angel

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u/Distinguished_Degu — 1 month ago

Sandbox

You were a stranger who weaponized a shared sandbox. We were just kids who happened to play in the same dirt, and you used that as a shortcut to my trust as an adult. That wasn’t a bond, it was a coincidence. A trick to reel me in and lovebomb me into believing you were safe.

You weren’t my childhood friend. You weren’t my soulmate. You were just familiar. And I mistook familiarity for safety because I hadn’t learned the hard way that some people don’t treat vulnerability with care. They see an open door, walk right in, and turn your trust into leverage.

Fuck you for tricking me into loving a lie, you fucking piece of shit. I wish I’d never met you. You could’ve left me the fuck alone, but you just had to get in my way, didn’t you?

You didn’t break my heart because the love was never real, so don’t flatter yourself. Besides, I’ve never, and will never, let anyone get that close to me.

Get out of my head and stop bothering me.

You’re not worth my headspace.

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u/Distinguished_Degu — 2 months ago

I’m not your project

Looking back, the red flags were always there, I just made the mistake of giving you the benefit of the doubt. It makes my blood boil to realize how fake you were. If you actually loved and cared about me like you said you did, you would have spoken up the moment your feelings changed. Instead, you stayed silent, built a fake bond with me, and suddenly expected me to fulfill the role of a romantic partner out of thin air.

During our “friendship” I told you repeatedly that I’m not interested in dating anyone. I was completely honest and transparent with you, something that you didn’t do. You pretended to be a safe, platonic friend while quietly waiting to launch a lovebombing campaign the second you thought you had me hooked.

It was a calculated bait and switch. You manufactured platonic intimacy just to extort something romantic out of me, and the second I said no, you showed your true colors. Turning to content like Brian Atlas after I stood my ground proved what this was all along: an ego trip.

You were never my friend. You were just waiting for a payoff. I feel dirty, used, and betrayed, but I’m glad I saw through the charade before you could do any more damage. The mask slipped, and the door is locked forever. Best of luck with everything.

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u/Distinguished_Degu — 3 months ago

Band suggestions

What are some good symphonic/blackened deathcore bands that aren’t heavily satanic? I know that’s an extremely difficult question to answer. Lol.

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u/Distinguished_Degu — 4 months ago

Just another mistake

Y’know, I’m used to salvaging a reason from the ruins… trading old heartbreaks for a little bit of wisdom.

But looking back at us, there was no divine assignment. There was no hidden purpose the day we crossed paths.

I walked away with empty hands and nothing learned from our relationship. It was entirely, essentially meaningless.

The senselessness, the absurdity of it all, is what hurts the most. I wish I never met you.

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u/Distinguished_Degu — 4 months ago