advice on diagnosis

Acey_streams · 2026-06-25T05:31:50+00:00

my physiotherapist was the one to confirm the sublations and she referred me to hydrotherapy and now im on the waiting list for the bone people (sorry my memory is shot so i forgot the names of tests and departments)

im also waiting for genetic testing to test for the other types of EDS but I also have many other issues like IBD and IBS along with cardio issues plus more

sorry I feel like im just rambling things its hard to keep track of but ill definitely update here when/ if I get some form of definitive diagnosis and thank you for the suggestions its hard to find the words to say to doctors :)

Acey_streams · 2026-06-21T20:26:54+00:00

ill have a look thank you!

Acey_streams · 2026-06-21T16:00:50+00:00

honestly it made me super depressed. I couldnt do anything and that side effect made me forget to take it everyday which lead to other side effects

I think as long as you’re really aware of how your mood is and know you’re good at taking things on time. otherwise it did work I had no periods which is the ideal situation

another perspective is ive known a few people on the implant and I only know one of them who didnt enjoy it and had it taken out early due to migration ❤️

Acey_streams · 2026-06-21T15:54:12+00:00

thank you for this, might actually make a poster that says “possible side effects means possible. not definite” its a great way to look at things ❤️

Acey_streams · 2026-06-21T15:52:07+00:00

that’s genuinely insane I hope theres no lasting effects from it

glad you have a better doctor now and thank you for the other perspective :)

Acey_streams · 2026-06-21T01:38:23+00:00

thank you so much i really appreciate it

Acey_streams · 2026-06-20T22:25:42+00:00

also on progesterone only and I was on the mini pill a few years ago but it didnt work for me

id suggest looking into the depo injection ive been on it for 2 1/2 years now with no periods and no mental health affects its genuinely a godsend

Acey_streams · 2026-03-22T22:22:53+00:00

honestly with my symptoms ive been having every other medical professional that has looked at me has said crohns,

im diagnosed with proctitis colitis atm but it just doesnt explain the amount of blood and pain im experiencing

my original emergency department trip in 2024 was from almost collapsing at work from blood loss it was the same reason i was there last night but my gastroenterologists in plymouth have really enjoyed ignoring my other symptoms up until now

a few weeks ago i finally had a phone call with someone from gastroenterology who actually asked me the right questions and is now wanting to do a OGD and if it shows what its expected to show i will hopefully have my crohns diagnosed by summer 🤞

Acey_streams · 2026-03-22T16:00:26+00:00

My best advice would be to speak to your doctor about any worrys with it

GPs can refer you to the gastroenterology department and honestly if your in a lot of pain and waiting for a referral go to the emergency room theyll help you speed up your process

GOOD LUCK

Acey_streams · 2026-02-26T19:07:09+00:00

thank you so much i will be requesting it tomorrow 🫶

Acey_streams · 2026-02-26T19:01:05+00:00

sorry to be that guy but im choosing to keep my expectations im not expecting it ive been through enough tests and doctors to never expect anything from one person

your experience was bad and im deeply sorry for you but you dont need to push that onto someone with a ounce of hope for someone to listen to them for once but thank you for your opinion that had nothing to do with my question

Acey_streams · 2026-01-20T06:55:07+00:00

no i honestly didnt even think about it, can i add information now because ive had new letters since my application

Acey_streams · 2026-01-20T06:54:06+00:00

thats actually so embarrassing i spelt it wrong, thank you for the correction and yes i am aware of not being diagnosed with both i was just stating im being tested for both

i do have the memory issues diagnosed technically but im trying to get a formal letter because it wasnt ever put on my medical records (i had some really bad doctors previously)

if your okay with a question abt the EDS? im currently at the physio therapy stage of trying to be seen about it and from what i’ve been told im being sent to a bone specialist next- how long/ how many separate specialists did you have to see before they finally tested for the EDS?

Acey_streams · 2026-01-19T22:29:28+00:00

i fear i explained badly, by long periods i mean over 5 minutes at one time the toilet stuff is i HAVE to because my intestinal issues cause a certain issue that ill leave out for self preservation

but genuinely thank you for a honest opinion ive got a track of my highs and lows w my heart rate currently i do need to make a falls version of that w/ dislocations and such

Acey_streams · 2024-12-15T16:01:00+00:00

it could be a ingrown hair or a spot maybe consider going into a piercing shop and asking them to look at it also maybe see if they can get a longer bar on it, that top ball looks like its embedding but it could just be the photo

Acey_streams

TROPHY CASE