"Not really sure, somewhere between hypermobility and classic. Our rhumy has said that all my 5 boys have EDS, and recently I have been told that is the cause of all my symptoms as well. Ive never asked him to be honest what type it is,…"
EDSAUS - Ehlers Danlos Syndrome Support in Australia
Aussie support for those with Ehlers-Danlos Syndrome and their families
This group is for Aussies who have Ehlers-Danlos Syndrome and their families, a place for support, information, compassion and understanding
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Does anyone have endometriosis and painful sex, polycystic ovaries, interstitial cystitis, colonic spasms?
Started by edivmali. Last reply by Broken 7 hours ago. 4 Replies 0 Likes
I'm just wondering if anyone who has type iv ED (or other types) has multiple gynaecological problems? Continue
Western Australian Members...
Started by Mel. Last reply by edivmali 7 hours ago. 27 Replies 0 Likes
Hi Everyone,I'm based in Stoneville, WA and other than Lorraine, who else is located in WA???Continue
Dislocations?
Started by Broken. Last reply by Lorraine Mathis 7 hours ago. 2 Replies 0 Likes
As I have never dislocated I dont know what it feels/looks like. Hubby texted me from work yesterday, saying he had an owchie (lol), he got home and his thumb joint at the hand is swollen and it is…Continue
Diastasis Recti
Started by Elyshia Hickey. Last reply by Broken 8 hours ago. 1 Reply 0 Likes
Hi, just wondering if anyone else has had a Diastasis Recti before. If so, do you know or can recommend a good plastic surgeon preferably in Brisbane who specialises in this area. Any information…Continue
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Broken replied to edivmali's discussion Does anyone have endometriosis and painful sex, polycystic ovaries, interstitial cystitis, colonic spasms?
edivmali replied to Mel's discussion Western Australian Members..."So! When and where are we all going to meet up!!!!!!"
Lorraine Mathis replied to Broken's discussion Dislocations?"Yep agree get some tests done ive dislocated my thumb a few times and it was sore but not to bad at all was swollen and purple"
edivmali replied to edivmali's discussion Does anyone have endometriosis and painful sex, polycystic ovaries, interstitial cystitis, colonic spasms?"Hi There Broken
Yes, I'm trying to find other people with these symptoms. They are causing me problems on a daily basis and I'm having a lot of other abdominal pain. The doctors have recommended a laparoscopy, but if they can't cure…"
Broken replied to Elyshia Hickey's discussion Diastasis Recti"All my children and I have Diastasis Recti, all born with it, mine much worse after children. One of my boys I am trying to see if they will operate on it now as he cant sit up at all using his stomach muscles, but so far they wont, they say that…"
Broken replied to edivmali's discussion Does anyone have endometriosis and painful sex, polycystic ovaries, interstitial cystitis, colonic spasms?"Yes have a few of those, is there something specific you were wanting to know or jsut to find others who also suffer through them. Interestingly my son also has interstatial cystitis."
Kylie Lang replied to Broken's discussion Dislocations?"I think he needs an xray and possible ultrasound...sometimes when we dislocate, nerves can get caught up in it all and it either hurts like the dickens or the trapped nerves don't react to pain so it doesn't hurt so much...at least thats…"
stephanie sookloll replied to stephanie sookloll's discussion Please help. Bad news and wondering if its related to EDS."Thanks, turned out that several of my relatives with EDS have all been tested for cushings syndrome. My tests came back clear for cushings but turned up something else which will need more testing. "
edivmali posted a discussionInteresting ED related research, if anyone is interested
Hi EveryoneI've been doing searching on the net and found this really long list of articles...links to the abstracts are available here:http://bri-shur.com/medline/mem_query?mem=93878&page=1Ehlers-Danlos syndrome--vascular type (ecchymotic variant): cutaneous and dermatopathologic features. Sharma NL, Mahajan VK, Gupta N, Ranjan N, Lath A J.…See More
Broken posted a discussionDislocations?
As I have never dislocated I dont know what it feels/looks like. Hubby texted me from work yesterday, saying he had an owchie (lol), he got home and his thumb joint at the hand is swollen and it is lumpy like the thumb joint is way out from where it shoudl be - i.e. bone under there is in the wrong spot not jsut inflamation.Soooo, he cant move it at all its tingly and it doesn't work anymore. He went to work today and carried on as per normal. he isnt in pain, says it hurts a bit but not a huge…See More
Broken replied to Kathy and Lucy's discussion Mobility Aids and In home help"With CA, just double check, as I think there are rules about you getting CA if you also get it for one of your children - not sure as I havent done it but a friend said that she was knocked back as she claimed CA for her two children, then her…"
miss b commented on miss b's status"No brain bleed. Now they want to move onto her spine. But since that's not life threatening we get to go home tomorrow!!!! Everything else can be done through outpatients."
Susan Barker replied to Susan Barker's discussion Hello from a newbie"Thanks Lyn,
Yeah it is overwhelming, and frustrating, and a huge drain on time (not to mention money!). I live in hope that something good will come out of it all, and a you said sort out some of my problems. I can see we all have to go…"
Lyn replied to Susan Barker's discussion Hello from a newbie"Hi Susan Sorry to hear you're dealing with so much at the same time. It's overwhelming when you have to see so many specialists (I'm seeing 5 at the moment and kerrrching!) but at least people are taking notice and hopefully will sort…"
Lyn replied to Susan Barker's discussion Hello from a newbie"Thanks Mazinoz. She's a vascular physician and I see her tomorrow so I will post how I go. Cpap appears to be going well. The chip readings say that I'm having very little in the way of events. X"
MJ replied to Susan Barker's discussion Hello from a newbie"Hi Susan. I also spent years on the merry go round before diagnosis:) Got a formal diagnosis this year via a geneticist. I have had lupus-like rashes a few times now but tested negatively for lupus itself, the rash is…"
Susan Barker replied to Susan Barker's discussion Hello from a newbie"Those articles are very useful, thank you for posting them, saves a lot of time and effort hunting these things up!
Bit more of an update from myself:
My GP is still a bit confounded with my symptoms. I was advised to go and see her again…"
mazinoz replied to Susan Barker's discussion Hello from a newbie"These are articles you may find useful.
http://www.jrheum.com/subscribers/07/04/664.htmlhttp://www.ncbi.nlm.nih.gov/pubmed/12867232http://www.reumatologia-dr-bravo.cl/patients/Dysautonomia.htm or other articles by…"
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