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Davidsmum

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Reply with quote  #1 
Hello,
Has anyone who suffers from IC/PBS been diagnosed with Ehlers Danlos Syndrome or any connective tissue disorders like hypermobility dissorder?
Thanks.

CarolAnn

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Reply with quote  #2 
Hi Davidsmum,

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.



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Carol
JaneW

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Reply with quote  #3 
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
CarolAnn

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Reply with quote  #4 
Hi Davidsmum,

I have emailed you.



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Carol
doreen123

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Reply with quote  #5 
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
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d fleisch
Icy

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Reply with quote  #6 
Hi Doreeen,

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.
Lucinda

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Reply with quote  #7 
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!
Trach

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Reply with quote  #8 
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!
Kaddi2012

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Reply with quote  #9 
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!
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xbexyx

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Reply with quote  #10 
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.
mrsT

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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!
NSU_TBH

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Reply with quote  #12 
My mother’s joint issues were always known to me as she had so many orthopedic surgeries starting before I was born. When I started having my own joint issues, it did seem like I had “what ever mom had.” It has been identified as hypermobilty EDS. I also was slammed with terrible bladder symptoms—pain, frequency, difficulty passing urine—immediately after a weird viral infection when I was 15. However, I had some bladder pain and frequency come and go to a lesser degree since age 6 that could not be explained. I was diagnosed with interstitial cystitis at age 16 when cystoscopy revealed glomerulations everywhere in my bladder. I’ve responded to Elmiron to varying degrees over the years, but the symptoms always come back quite severely.

Meanwhile, EDS was being proposed for my mom—and by extension me—but I never considered EDS with IC until recently. Now I am really curious to know if there is a link. My mother has developed bladder symptoms similiar to mine that makes it seem like this may really all be linked. It is interesting the mast cell activation syndrome is thought to occur in EDS and IC. However, studying comorbidity with these two seems to be lacking. I’ve had doctors tell me that it is certainly possible, but that’s as far as it goes. I’ve only recently asked doctors about this, and I have not with a geneticist, buf I plan on it wihen I see the one my mom has seen who researches EDS a great deal. Interestingly, he did think my mother had something beyond EDS-III, so go figure! We’ll see what he thinks about me.
NSU_TBH

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Reply with quote  #13 
Quote:
Originally Posted by mrsT
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!


I don’t know if you’ll see this since you posted four years ago, but Elmiron is not a last resort for IC. I assume you mean the pill form and not intravesical Elmiron. It’s supposed to be the first choice treatment becsuse it is less invasive than any intravesical treatment (that is often very hit or miss, and even when it works, is often temporary).

Cystectomy is definitely very drastic, and some patients report no relief in symptoms (suggesting that in some cases of IC, it is how the body responds to urine).

After all these years since your post, I hope you are doing well.
mrsT

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Posts: 57
Reply with quote  #14 
Many years later...
Elmiron was not a success for me. I think my bladder was already too damaged. In October 2014 I had surgery to create an Indiana pouch. The surgery was traumatic as was the 9 week stay in hospital. Almost 4 years later the Indiana pouch is fantastic but the surgeon left my native bladder in situ and it is still causing me a lot of pain.
I have had my 9th hydrodistention with an installation of IAluril. On examination my bladder is very torn.
I have recently read about skin issues with hypermobility. I probably should not have had any of the hydrodistention procedures. I now think it is an unsuitable treatment for someone on the hypermobility spectrum. Too late for me now but I hope some of the medical staff I have been involved with will consider the connection.
I would certainly not recommend it for a hypermobile person.
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