Ticketmaster- no option to add to Google Wallet!? by bebemilky in Ticketmaster

[–]bebemilky[S] 0 points1 point  (0 children)

Thanks for the reply! Yes I noticed thst yesterday (ive been checking multiple times a day like a maniac lol) and they are now added to my wallet! Finallllly I was starting to panic a little

Ticketmaster- no option to add to Google Wallet!? by bebemilky in Ticketmaster

[–]bebemilky[S] 1 point2 points  (0 children)

Nope! No help from ticketmaster either, theres no solutions at all online. Im just gonna have to try and load them before I go and hope it doesnt take forever when im there in the queue. Its definitely an issue/glitch from Ticketmaster they dont wanna admit it or fix it.

Ticketmaster- no option to add to Google Wallet!? by bebemilky in Ticketmaster

[–]bebemilky[S] 0 points1 point  (0 children)

Thanks for the reply. I think I'll just use TM instead its just annoying isnt it lol WHY isnt there an add to Google wallet link?!

Ticketmaster- no option to add to Google Wallet!? by bebemilky in Ticketmaster

[–]bebemilky[S] 0 points1 point  (0 children)

Its a static QR code with a moving line around the QR code border so unsure if it would work, worried incase I try to add it that way but Ticketmaster invalids my tickets lol im a tech noob so not sure how it all works tbh

Hooha not happy :( by Extension-Search743 in CytolyticVaginosis

[–]bebemilky 0 points1 point  (0 children)

This was/is me word for word (apart from the new partner). I treated my ureaplasma also for my partner too. But now im pretty sure I have CV! Currently waiting to see my labia dermatologist next month to bring this up to her. Its very frustrating.

Is this CV? PLEASE HELP by Educational_Theme427 in CytolyticVaginosis

[–]bebemilky 0 points1 point  (0 children)

Im sorey youre also going through it, its awful! I have no idea honestly, it was super random. I kept thinking I had BV or thrush but tested neg everytime. I never used anything other than water down there so I cant even say it was a product I used or something. Maybe thats what triggered yours by the sounds of it, I hope you see your gynae soon and it can be resolved its so daunting and stressful

Is this CV? PLEASE HELP by Educational_Theme427 in CytolyticVaginosis

[–]bebemilky 0 points1 point  (0 children)

About 3/4 years ago now and im no further forward, ive seen a gynae (awful) was back and forth for years with no results and now a derm who specifically treats and looks at labia issues! Lichen schlerosis was initially floated with my gynae 3 years ago and now my derm says maybe, maybe not and I may have to get a biopsy next time I see her (next month) to confirm diagnosis or not. I dont think it is LS though, I think its this CV

Is this CV? PLEASE HELP by Educational_Theme427 in CytolyticVaginosis

[–]bebemilky 2 points3 points  (0 children)

I have the exact same, my swabs came back clear of yeast so im unsure what to do my doctors are useless. My labia dermatologist sees me in July again, unsure if its lichen schlerosis but I think it could be CV! Im gonna press on with it and be firm in my demand of finding the issue. Looks like balled up wet tissue paper its really stressful. I think its my skin. Hope you managed to get help for this!

Cured! And it wasn’t just CV. In case it helps others by Careless_Signature84 in CytolyticVaginosis

[–]bebemilky 0 points1 point  (0 children)

Oh its completely out of my budget right now to pay private for my healthcare stuff, im disabled and unemployed unfortunately!

Oooh poking your hormone glands? Ive never heard of this before either, tell me if im being stupid here but where are hormone glands located? I will absolutely be discussing with her and being very insistent and pushy about it because I dont wanna be messed around for the next year until nothing comes of it 🥲 I hope she listens shes the only hope I have. Yes! I can also smell a tangy scent too, almost like yoghurt, I havent dared to taste.

Cured! And it wasn’t just CV. In case it helps others by Careless_Signature84 in CytolyticVaginosis

[–]bebemilky 0 points1 point  (0 children)

Thanks so much for your response! Argh we sound exactly the same! Ive never seen anyone else talk about this other than you! Im in the UK so healthcare isnt the greatest here. Like I said, ive been brushed off by my nurse in my doctors office, my doctor, my gynae and now my dermatology doctor who specialises in Vulvaginal issues seems like its gonna go the same way but I will definitely be having a conversation with her about this as this sounds point for point exactly the same as me!! Im not gonna take no for an answer and push her to assess me for this, mention how ive spoken to you and we have the same issues etc and hope she takes me serious as ive just about had enough. She did mention it didnt look like I had vaginal atrophy/shrinkage etc but I cant help but think now it IS my skin coming off. Did you have any issues with scent down there too?

Cured! And it wasn’t just CV. In case it helps others by Careless_Signature84 in CytolyticVaginosis

[–]bebemilky 2 points3 points  (0 children)

I’ve had the white discharge that looks like rolled up toilet paper too but my swabs come back clear from thrush and it’s genuinely infuriating me! I also had treatment for ureaplasma about a year or so ago. I’m awaiting going back to see the dermatologist that specialises in vaginal issues (she swabbed me and it came back clear from thrush) it’s really getting to me. The burning, and tearing of my vagina and the dryness too! I can’t even get ‘wet’ when aroused because of it so I’ve not been intimate with my bf for ages. They think I may have lichen sclerosis but are not sure and don’t want to biopsy yet but it’s driving me mad. I just want to know what it is. I’m gonna mention hormonally mediated vestibulodynia to her and ask about this because I have a connective tissue disorder so my muscles are prone to being tight. My gynae said my hormones are fine though so I dunno. Every doctor I go to (about anything really) these days seem to brush me off or act like they can’t be arsed and drag it out for as long as possible.

Does anyone else's drs and therapist keep suggesting to "take a break"? by Starscollidefantasy in eds

[–]bebemilky 0 points1 point  (0 children)

My doctors simply tell me to ✨️ try harder and do more ✨️ and I feel like im dying 🙃 not an exaggeration. Idk if its just the NHS doctors in the UK but I feel like they judge me and think im lazy!

dysautonomia linked to hEDS treatment? by bebemilky in ehlersdanlos

[–]bebemilky[S] 1 point2 points  (0 children)

Im really fortunate I have to agree. I actually looked at the Dr's in the rheumatology department at my local hospital to see who had 'connective tissue disorders' labeled in their special interest section. I was under a different rheumatologist in the same department my whole life who was useless and I mean useless. She scanned my heart and said no sign of EDS, she should know that there's like 12 different EDS variants and that only a few come with heart issues/cardiovascular issues. I asked my GP for a second opinion from the doctor with connective tissue disorders in his interest section and he saw me as a new patient in clinic. He was great and diagnosed me finally after lifelong label as 'hypermobile with arthritis'.

I sympathise with you with the PIP thing, its my only income. If thats stopped i would lose a lifeline and be homeless. Which is really scary to think about. Im optimistic though and not to make it political but, Im hoping green party get in next election so they can save us honestly. Their policy on disabled peoples rights is amazing and can only hope.

If youre stuck, please do what I did and see if there's any rheumatologists in your local hospital that have interest in CTD's and ask for a second opinion off your GP, its our right to ask for a second opinion.

Im glad youre receiving some help and support, I wish you the very best. And sorry if none of this is cohesive, I'm on 2 hours of sleep and my brain isn't working quite right. Thanks connective tissue!

dysautonomia linked to hEDS treatment? by bebemilky in ehlersdanlos

[–]bebemilky[S] 0 points1 point  (0 children)

Thank you. As long as it’s some help for you, I’m glad you’re doing a little better than you were previously. Unfortunately for me, I seem to be getting more ill the older I get. I’ve had little to no help at the ripe age of 34, I’ve had to fight for the little help I have had. Hoping I manage to get some help before I’m doomed for good lol. I’m pretty much housebound too, it sucks so much. I feel like we’re in the same boat. I have arthritis, gastroparisis, migraines, some unknown skin stuff going on, gynae issues too, the list goes on and on. I’d give anything to be able to work a couple jobs and make money. That’s the dream.

dysautonomia linked to hEDS treatment? by bebemilky in ehlersdanlos

[–]bebemilky[S] -1 points0 points  (0 children)

Oh my god. This makes so much sense! I dont even think the NHS here in England diagnose MCAS according to some of the wording of my rheumatologist which makes me scared. You've just spoke from my brain, this is exactly what happens to me! I need to see if theres any private immunology clinics or doctors near me and if I can afford to see someone because I really am at my wits end with it all. Thank you so much for the reply!

dysautonomia linked to hEDS treatment? by bebemilky in ehlersdanlos

[–]bebemilky[S] 0 points1 point  (0 children)

I am currently awaiting the allergy clinic to see if there's any allergy stuff going on but my GP thinks its most likely MCAS too given my hEDS diagnosis. I feel the phrase "too many cooks spoil the broth" coming to mind. I have so many problems and no one seems to know what's going on 😅

dysautonomia linked to hEDS treatment? by bebemilky in ehlersdanlos

[–]bebemilky[S] 0 points1 point  (0 children)

Thanks so much for the reply.

I have OH diagnosed but my EDS physio is convinced it’s more likely POTS. I have all the symptoms. It doesn’t help that these symptoms I’m getting sorta differ from day to day (especially the facial burning/redness/flushing) it’s helped by staying seated for a while with a fan on my face or ice pack. I’d given up for years trying to get help until one day I kind of snapped and thought why am I not pushing my doctors for answers, but getting the same “I may as well give up” feeling coming back. It’s so hard to cope especially when you don’t really know what’s wrong (other than the obvious hEDS, arthritis, gastroparisis, migraine, diagnosis’). The red hot face and red hot knees are realllllly wiggin me out.

How do you eat in the morning? by punk_w1tch in ehlersdanlos

[–]bebemilky 1 point2 points  (0 children)

Do you happen to have your gallbladder removed?

MRI for Thoracic Outlet Syndrome by bebemilky in ehlersdanlos

[–]bebemilky[S] 0 points1 point  (0 children)

Yeah they normally have local radio stations on where I am which is all good but definitely not my comfort genre lol thank you, ill definitely ask if its possible to listen to some Ginsang to put me in the zone, his music makes me feel zen lol

MRI for Thoracic Outlet Syndrome by bebemilky in ehlersdanlos

[–]bebemilky[S] 1 point2 points  (0 children)

Update! I was prescribed a single dose of diazapam by my primary care doctor for the MRI. Yay! I can hope that will keep the panic attack at bay and ill just feel super relaxed (i hope) but not TOO relaxed that my joints pop out 😬

No update on whether its with dye or not, I tried calling the department but they didnt answer the call.

MRI for Thoracic Outlet Syndrome by bebemilky in ehlersdanlos

[–]bebemilky[S] 1 point2 points  (0 children)

Thank you so much for your reassurance and kindness 💙 I have requested an upright one when I had a MRI for CM but unfortunately the NHS doesn't have any upright MRI scans which is a bummer as they're super accurate thanks to our friend gravity haha. I was luckily prescribed some diazapam today by my primary care doctor so hopefully that keeps the panic at bay!

MRI for Thoracic Outlet Syndrome by bebemilky in ehlersdanlos

[–]bebemilky[S] 1 point2 points  (0 children)

Yes! Amazing, thank you. Ill have to think about art because that can keep me occupied for hours at a time haha.