u/Heavy-Mud-8307

Periods do me in really badly

Problem is I have other health conditions that make it confusing as to what's going on

I have hEDS and some neuro stuff, aswell as POTs and MCAS as the main ones, I also have a rectocele so idk if that contributes?

I'm not anemic as I have had that checked

My symptoms around periods seem to be:

Up to a week before: cramps, bloating, fatigue, purple lips, worsening of POTs, nausea, I get paler too

On my period:

I get this pain up the entire left side of my stomach that is excrutiating and leaves me wimpering in bed, aswell as in the normal locations of my lower stomach and it bloats disproportionately to this side, it's noteably swollen in areas, chest pain even when my heart rate is normal that feels deep and internal, heavy and clotty flow that often starts pink but within 24 hours is brutal, inability to eat or drink much without sometimes throwing up, other times it's just severe nausea and indigestion(seperate to the other chest pain), pain in my back on the left side by my lower ribs, inability to poo or pass gass without severe pain, and I get very gassy, very dizzy and breathless(could be the POTs flaring along side it too), random muscle twitching in the areas of my stomach with pain sort of like a popping sensation that happens a lot, extreme fatigue, my thighs swell up(they do this anyway but it's worse than usual) and have a burning sensation sometimes it spreads down all my legs or is a general poofy burning on my whole body, swollen lymph nodes in my groin.

It normally improves by day 3.

My biggest concern is the left side stomach swelling and pain that is much higher than it should be. I know periods shouldn't be this bad but idk if it could be atributed to something else?

Idk if I've missed some symtpoms off here but these are the ones I can remember rn.

My hEDS also increases sublaxions & dislocations during periods.

My periods are very regular so I can scedule a week of rest around them thankfully.

Can anyone else relate? Should this warrent further investigation?

I have had an internal ultrasound before with no noteable annomalies.

Rant:

I have had a week from hell with various things going wrong. Been unable to rest as much as I've needed. Everything has flared. My pet has been sick and needed so much care, catching him to give him meds ect, so I've been having to sort him out which would have been managable if everything wasn't so painful rn.

I live on my own because my ex husband was abusive and blamed my disabilities for his addictions. This has been the last 3 months since he left and this is my worst flare during this period. He randomly rings me up, doesn't even ask about me, and barks commands at me. He's blocked for now, can't be dealing with him. He's psychotic or something from all he's been taking, I tried to get him sectioned but he ran off across the country.

2 weeks ago I was managing okay but it's like all it takes is stress and overdoing it and I become in agony again. I am worried I should rehome my pets because it makes me so ill when they get ill but they're my babies and, although my health has suffered, he has been well cared for.

I just feel like I am not equipped to cope with everything. My whole body falls appart at once like some dramatic catastrophy. Flared so bad I can barely eat without almost throwing up. Don't have the energy to wash, need to go to the shop but used all my outing energy at the vets and feel like I can't go till I'm clean.

I feel like my life is a nightmare rn. I can't deal with having another seizure or how weak I feel. I just need to go to bed for a few days but I can't because my boy still needs me. He's doing a lot better and I put him on cage rest so it's easier for me but then I also feel like a meanie because he arguably could be let out now if I wasn't too disabled to keep catching him twice a day for meds(he's a rabbit) and I'm anxious that if their bond has broken it will be too difficult for me to rebond them rn so I'd have to clean a whole room for him to stay in till I could if that was the case.

I just want to tap out of life rn but have responsibilities. Idk what to do. I'm not equipped to live like this, on my own, so disabled. I don't want to loose more things because I'm not supported properly. My buns are my anchor for getting out of bed and being responsible.

I'm also bipolar and I'm in some sort of depressive mania rn. Why can't one part of my body work?

I've struggled to gain weight for so long and also have dysphagia so everything has to be blended. What a combination.

I have finally got an ONS that I only mildly react to!! So I count that as tollerated, sore throat and itchy mouth but my digestive system seems to be fine with it!

Aymes Actagain Plant Powered

I thought I'd share incase this helped anyone else. I have tried every single other drink availble to me but they all have coconut or milk which I later figured out was what I was reacting to with them. This one doesn't!!!

It's fava bean based. Not disgusting and actually quite nice. Very thick though.

Though the café latte one hurts my bladder but the vanilla(even though I usually react to vanilla, this seems to be okay for me) and salted caramel seem fine!

Honestly estatic. I'm going to finally get strong again!!!

Is it just me? I can be watching a film or notice people in real life just casually hyperextend a joint and in my head I'm like 'Noooooo!!! Crisis!!' And it totally icks me out. Even if it doesn't hurt, I worry it will cause them pain like me someday

Same for when people tilt their head back, if I do that at all I'm screwed, so when I see others do it, even if it's fine for them, my brain just short circuits into '!!!!'

Yet if my shoulder pops out I'm blasé about it. What is this hypocricy I have towards myself.

Pretty sure they're two seperate things for me, seen a neuro who said they didn't know why they're happening but never did an EEG just an MRI. Seem to be partial frontal lobe seizures, could be epilepsy? Not sure not had the EEG and cba to fight for one even though it should be standard.

But my question is, for others who experience similar, if you are manic or hypo(not sleeping enough and doing too much triggers them for me, so they are more often during these periods) and you have a seizure or cluster, do you find you crash for a few days, not in a depressive way but brain foggy and actually sleep, then go back to manic like you were before often?

It doesn't stop my mind racing but feels like racing through thick fog and I'm sleepy, it's like I can't fully wake up. It confuses me because it feels like I might go back to depressive, but after a few days I'm back up high again. Just a weird experience and I wonder if others can relate?

Makes it kind of hard to track where I'm at, do others who experience this class it as still manic but on pause because brain fried out? Or does it count as a mini depressive episode?

Is it just me that kind of likes the first part of a cycle change, other than deep depression, just because it's different to what I was before?

It gets old about a week in then I start to hate it but for the first bit, swapping into anything other than deeply suicidal seems alright. Which sounds odd because it's even mild depression that I feel this way. Which makes no sense.

Even with psychosis. As extremely stressful and confusing as that was, not that I knew what was happening at the time, it was like I only really cared about irrational things and my normal concerns and worries went away and I kind of liked that about it. My real life was very stressful at that point.

Maybe it's just because it's what I know and I get bored of being the same too long. Makes me wonder if being stable long term is something I'd hate, but I've never managed it to know.

Maybe it's just what I feel is the human experience for me. Or maybe I'm messed up beyond my moods cycling and have a love-hate relationship with bipolar.

But then if part of me likes it(though probably not, just familiar with it) makes me feel like this happens to me because it's something I secretly desire and this is somehow my fault or I'm just attention seeking(even though I know I'm not because if something happens when no one is around and you never tell anyone then that disproves that) and then I think round in circles about hating this, enjoying bits, hating myself, getting confused and feeling like I've made it all up despite multiple sources of external validation before I even accepted this as something I deal with.

This type of brain is so trippy to deal with. Sometimes I wish I didn't know much about it at all and just expereinced my experiences because then I wouldn't think about the why/how so much and it would be easier to just be. Though not knowing led me to some bad spaces and I didn't understand why at the time.

Overall, it's beneficial to be aware but now I've researched so much I feel like I'm making it up. And when I think rationally, I don't enjoy this, but sometimes I get confused. Maybe it's harder to hate something you can't choose that to enjoy bits of it or feel like you're making it up. The illusion of control and fake self acceptance.