Registered: 1208620037 Posts: 559
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Has anyone who suffers from IC/PBS been diagnosed with Ehlers Danlos Syndrome or any connective tissue disorders like hypermobility dissorder? Thanks.
Registered: 1137781945 Posts: 396
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I was diagnosed with Ehlers Danlos Syndrome many years ago when I was in my 20s ( I am now 53) I have had no problems with it but I do find now that I have a tendancy to arthritis which I'm told can happen in later life after having hypermobile joints. __________________ Carol
Registered: 1070406350 Posts: 1,488
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Hi,When I was about 14 I saw a specialist in rheumatic diseases and he thought that I might have Ehlers Danlos syndrome as my mother,sister and I all have poor healing skin and hypermobile joints.
I used to be able to clasp my wrists behind my back and other strange things like that when I was younger.I am getting arthritis is my hands now though.My mother is quite disabled by osteoarthritis now and my sister's knees have been affected by a rheumatic problem.All three of us bruise easily too. Love Jane XX
Registered: 1137781945 Posts: 396
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I have emailed you. __________________ Carol
Registered: 1366743507 Posts: 1
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was recently diagnosed with ehlers danlos type 3 and have had cystittis on and off for several years would like to know if anyone thinks this ehlers danlos syndrome makes their symptoms worse, thanks all
__________________ d fleisch
Registered: 1330595322 Posts: 428
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This question of whether Ehlers Danlos and hypermobility syndrome is one of the key factors in interstitial cystitis and bladder problems (inflammation etc) is something I would also like to know for certain. I have got a degree of hypermobility but never had a full diagnosis of Ehlers Danlos. One of my relatives had ED. I bruise easily, I get dermographism and also bleeding under the skin spontaneously. I cannot seem to get any answer from a doctor or consultant about whether hypermobility and connective tissue disorder is affecting my bladder. I wonder also if people with hypermobility or ED do not have the capacity for their tissue to repair in the same way as it does for normal people and therefore this impacts on cystitis where the lining of the bladder gets damaged and therefore cannot replace easily. How long did it take to get a diagnosis of ED and from where (ie. a hospital or just a GP). Do you have any other symptoms like IBS, bowel problems. A gastro told me that ED and hypermobility can have an effect on transit time and motility in the bowel but again nothing definite. I the bowels are bad again this can impact on cystitis because I suppose if there is a problem with motility in the bowels, then bacteria and stuff can be worse and this can then translocate to the bladder and set up problems. I just wish these doctors could give us the answers as they leave you in mid-air knowing nothing.
Registered: 1140630174 Posts: 42
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That's really interesting. I have some hypermobility and I bruise easily. I can well understand how this might impact on tissue repair, as Icy suggests. I seem to have non-bacterial cystitis at the moment, caused by sex, and I've just been wondering why things are still painful a week and a half later, but it makes sense if the healing mechanism is impaired in some way. This is such a complex condition - really wearing!
__________________ 38 year old southerner up north who wants to know how to have sex without getting cystitis!
Registered: 1389057494 Posts: 1
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I was diagnosed with Ehlers Danlos Hypermobility approximately 3 years ago by a geneticist. Both my 16 year old daughter and I have dysautonomia (POTS and vaso vagal), we bruise very easily, (I learned I have a clotting disorder), and we both have a myriad of other EDS issues such as joint pain, severe migraines, and some GI issues. I also had a C1/C2 fusion for cervical instability in August. Thankfully, both of us have a fairly good team of doctors, but it has taken a long time to find the right specialists. However, bladder issues are a new problem for me. I have had fairly frequent UTI's over the years, but recently started having bladder spasms without a positive urine test. So I am pursuing testing this week. As for EDS and GI issues - yes, EDS is a significant cause of GI problems. Since our body is comprised of so much connective tissue, EDS is much more than a "joint" disorder like many doctors believe. I have found a wealth of knowledge from these sites: ednf.org, TCAPP.org (this website has my favorite video about EDS the Dr is one of the top EDS geneticists in the world), and csfinfo.org (search ehlers danlos and look for physician video topics that interest you) . Ednf.org also has a Facebook site and a blog on the inspire network. Dr. Tinkle, one of the other top EDS top geneticists, also has an excellent book available on Amazon, "The Joint Hypermobilty Handbook". The Professor is top expert in the UK. I believe he is a rheumatologist in London. I hope this may help with any EDS questions. You will soon have several regarding cystitis! Thanks!
Registered: 1393564309 Posts: 1
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I have vascular EDS. I am also limited on what I can and can not do due to my tissue tearing easily and creating many life threatening problems like 2 brain aneurysms, spontaneous bilateral dissection of the carotid arteries, esophagus tear, tear in my stomach, and so much more. I am on blood thinners for life and not suppose to lift over 5 pounds or bend over unnecessarily. Every year I tend to suffer with new symptoms and always difficult to know if they are related to my EDS... or something else. I have always had a strong bladder.....but now it seems to be super bladder! At my age that shouldn't be. As women age our bladder gets weaker.... but mine is opposite. It seems to be getting stronger. I just don't have the urge to go and when I do it can be SEVERAL hours later than it should be. I don't have a problem going when I do. I can sleep all night and wake up without the urge to go. I can delay going up to 3 hours after waking.....and I know this is not normal. I have trouble with my low back, also have GI trouble.....so if there is any pain from my bladder I don't know what it is and blaming it on something else. My husband fears my bladder is getting more stretchy due to my elastic type skin and organs. I am going to make a apt with a specialist to have it further investigated. Will post update when I do!
__________________ Karen addison
Registered: 1143531394 Posts: 19
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I was diagnosed with EDS type 3 and POTS back in 2011, I have been unwell since I was 11 (I'm now 25), but was diagnosed with 'M.E.' when I was 13. It seems it is all linked, I am also being treated for mast cell and have immunodeficiency.
Registered: 1158609015 Posts: 56
Reply with quote #11
Hi, I have had IC/PBS for almost 10 years now and approaching the possibility of bladder removal. I was diagnosed last year with joint hypermobility syndrome. I have had a lifetime of soft tissue injuries which never seemed to get better. Last year I developed very painful tennis elbow and my GP referred me to a rheumatologist who very quickly diagnosed me with JHS. I have since seen a podiatrist and have to wear shoe insoles as the joints in my ankles and feet are so loose it has caused me knee and back pain.
I am very interested to read of this connection. I am now hoping to start a course of Elmiron as a last resort treatment. If that does not work then goodbye and good riddance to my bladder! I am at the stage now that movement, particularly walking, causes me so much discomfort and pain in my bladder that life is very difficult. Hopefully the Elmiron will work!