Need to write down thoughts on this journey

[u/chelsea_might]

Hi all - first time reddit poster, long time Internet lurker. This is a resource I've come to often to see stories like mine and I just need a quiet place to check-in about my own journey.

I'm 33 years old and living in Brooklyn. Since about 2018, I've had on-and-off issues with fainting, fatigue, chronic pelvic and neurological pain, tremor in my legs, back and hands, and other things. I'd have these flare ups once or twice a year, sometimes landing me in the hospital, with no answers. Always told to follow up with my gynecologist about endometriosis, who always told me she didn't think that was the case. It was all infrequent and manageable enough that I just continued on.

In October of 2024 it happened again - woke up with severe pain in my left side and pelvis, wondered if I had a cyst rupture or something. ER visit showed nothing serious and told me to follow up with gynecology. But this time, my symptoms didn't subside on their own. It all just got worse. I started having debilitating tremors and heart palpitations, frequent fainting episodes, chest pain in addition to the now daily pain in my side, waist and legs. I hardly have the energy to climb the stairs to my apartment, let alone go to the laundromat, grocery store, or the gym.

The stress of not knowing has been agonizing as someone who has lived with OCD all my life and generally manages it well after years of practice and learning. And doctors love to just call out stress and anxiety and send you home. I've had my mental health condition my entire life. I've worked my ass off to understand it, manage it. I've gone through highly stressful times in my life without these physical symptoms. I know what is happening to my body now is not simply stress.

After more specialists than I can count and embarrassing ER visits where I'm told I'm fine when I can barely stand, I'm now waiting on two critical appointments: a gynecological surgeon to discuss a laparoscopy to diagnose endometriosis (my mother and both grandmothers had it), and a cardiologist to discuss POTS, which wasn't something I knew about until an ER doctor mentioned it to me.

But now I see all these stories of doctors thinking these are "trendy" conditions that people are diagnosing themselves with and I just don't know what to think or feel. All I have is that in the last six months, my body has felt like it's gone completely haywire. I was a strong, active woman who worked out, had a happy social life, and successful career. Now, if I can shower and answer my emails, it's a successful day. I ask myself if Long Covid is at play, since I had the virus about a month before this all started, though I thought I had recovered fine.

My biggest fear is dying (which should be obvious, but it took me a while to learn I actually was genuinely scared of this). My second biggest fear is never finding out what is wrong with me and it completely ruining the life I've built for myself. I now see things about the combination of POTS and endo being brutal and I just want to believe it'll be possible for me to have a semi-normal, independent life again. I just want to be better. I just want to not live in fear of what new symptoms every day will be, feeling like my body is a ticking time-bomb. Like if I don't find the answer - know what wire to cut - then I'm going to lose everything.

If you read, thank you. I don't know what I want out of this other than some hope that things can possibly get better.

[u/Careless_Block8179]

Doctors who think these are trendy conditions have a real short memory. 

It’s so bizarre to me that we think we could live through a brand new, worldwide illness that killed people and everyone who caught it would have no lasting effects. For tens of thousands of years, human beings have had illnesses that might change how your body works forever (see: polio, which disabled people who are still alive today, not even that long ago), but somehow we have so much faith in modern medicine that….everyone with symptoms of dysautonomia must be faking it because they watch too much social media? 

Funny how it’s always illnesses that affect more women than men that are the ones “in our heads,” no?

I don’t have answers, I just feel you. And I’m being real blithe about it because I’ve had two good days in a row and my sense of humor has come back, but it’s really all just a crock of shit and I’m sorry ANY of us have to deal with this. Some days it feels like the idea of eventually dying is my ONLY comfort, like, shit, at least I won’t have to do this FOREVER. 😂 

[u/Jazzblike]

I just got diagnosed with POTS and NMH this week and I feel like I had been seeing endless doctors for years with all of them telling me I’m fine and my test are normal. Honestly the only thing that changed is I didn’t take that for an answer this last time, I got upset and I said no it’s not fine you keep telling me that losing consciousness is fine but it is not ! They finally ordered the tilt test and look at that I was right. It truly sucks how hard we have to fight to be heard. I live in this body everyday so I feel I am the only specialist on this experience, end of discussion.

Be encouraged that if you keep advocating for your body one day you will be heard