Alayna Marson

⭐️ ill person ⭐️

#Dysautonomia #Endometriosis #Erythromelalgia

[Alayna Marson @AlaynaMarson]

@Endit_Mendit At this point I feel like crowdfunding millions of £ to be able to fund some decent research. Not that patients should have to fund research into their own conditions obviously, but no one else seems to be funding it 🤷🏼‍♀️🤦‍♀️

[Alayna Marson @AlaynaMarson]

Hoping someone knows the answer to this, even if the answer is "no one fully knows". Does #Endometriosis cause irregular periods/long menstrual cycles, and if so, how/through what mechanism? I have Endo and my cycles range from 42 to 57 days.

@theendoinformer @Endit_Mendit

[Alayna Marson @AlaynaMarson]

@Endit_Mendit Exactly this. Then when you occasionally do find a great paper that has made some interesting discoveries, inevitably the investigators aren't given more funding to further their research. So no progress is made.

[Alayna Marson @AlaynaMarson]

@theendoinformer This is helpful information, thank you.

[Alayna Marson @AlaynaMarson]

@theendoinformer If only that's what happened! In my case - offered ZERO investigations except surgery. Whilst I understand this is the only way to definitively diagnose Endo, I would have liked an offer of some less invasive tests first in case there's other things that could be wrong too.

[Alayna Marson @AlaynaMarson]

@Endit_Mendit Thank you for answering 🙂

Frustrating is definitely the word! I tried to do some research into this and just couldn't find many answers at all. I want to know the whys and hows, but the answers aren't there.

[Alayna Marson @AlaynaMarson]

@rarediseaseuk @GeneticAll_UK Hi there, so sorry it took me 8 months to reply to this - the joys of said ⬆️ rare disease 🤦‍♀️ so when I was diagnosed I may have been registered automatically? There is no organisation for my condition in the UK sadly, but thank you for sending those links for research/studies 🙂

[Alayna Marson @AlaynaMarson]

Is there anywhere I can register myself as a rare disease patient in the UK? I have a diagnosis, but haven't been offered much after that. Would love to be involved in research and/or have further investigations.

@rarediseaseuk @GeneticAll_UK #RareDisease #NEISVoid

[Alayna Marson @AlaynaMarson]

Finally requested a referral for my suspected Endometriosis and was told that "it can't possibly be Endometriosis" and that my symptoms are "physiologically impossible". So that went well 🙃

#EndometriosisAwarenessMonth #Endometriosis #NEISVoid

[Alayna Marson @AlaynaMarson]

@hmky I've had so many issues with Rigevidon, it's awful. I miss Loestrin, it disappeared like overnight as well so I didn't even have time to research a new alternative. I just went to pick it up and they were like "um yeah that no longer exists" 🤦‍♀️

[Alayna Marson @AlaynaMarson]

Does anyone know what the nearest equivalent of Loestrin 30 is? I was on it for years (for #Endometriosis) and had no issues, then it stopped being available. I was put on Rigevidon which has been a nightmare. Can't take progesterone only pill (long story). #NEISvoid

[Alayna Marson @AlaynaMarson]

@hmky No, sadly not. I keep meaning to ask a pharmacist, since I think they have charts they can look them up on. I'm not sure there is one with exactly the same hormones as Loestrin 30, but it would be really useful to know the nearest equivalent.

[Alayna Marson @AlaynaMarson]

5 years ago I learned that there is an actual name (photic sneeze reflex) for the thing I have where the sun makes me sneeze. Today I learned that the other name for it is ACHOO syndrome 😂

(Yes, really)

[Alayna Marson @AlaynaMarson]

I will obviously go to the doctor, but just wondered if anyone has any insight until then (will be a few weeks before I can get an appointment).

[Alayna Marson @AlaynaMarson]

Is it possible to just get a hernia for no apparent reason? (And if yes, would it be more common in people with #EDS or who are hypermobile? (Context below)

#MedTwitter #NEISVoid #ChronicIllness #DisabilityTwitter

[Alayna Marson @AlaynaMarson]

Less pain this time, but a different area of my stomach (slightly lower, but same side) is now slightly protruding and it feels reeaallly weird. Especially if I laugh or cough. Kind of feels like jelly trying to push through your abdominal muscles?

[Alayna Marson @AlaynaMarson]

Anyone who's experienced kidney pain linked to #Endometriosis - does the kidney pain only happen around your period/coincide with other Endo symptoms? Or do you/did you get kidney pain randomly throughout the month too (when you had no other Endo symptoms on that day)? #NEISvoid

[Alayna Marson @AlaynaMarson]

@UntoNuggan This is excellent 😂 I relate so much. I have to eat really often, at specific times, otherwise it's a disaster (hypoglycaemia). Decided not to eat my 10pm snack the other night and I was up till 3.45am as a shaky, sweaty, burny, nauseous mess. Major regrets 🤦‍♀️